Multiple System Atrophy and Shy-Drager

2011-07-31T10:40:00.002-05:00

http://onepartwidow.blogspot.com/

Thank You

2011-07-30T11:14:00.002-05:00

Thank you to each of you for following my blog. It was written with love, pain and frustration. I started a new blog, Life After Care-giving, but it did not have the right feel for me.

I have started a new blog, one that feels more up-lifting. It is called One Part Widow. If you wish to remain a part of my life I would love to have you tag along.

Thank you for reading this blog for the past 3 years. I hope you decide to join me once again.

Ann

New Blog

2011-01-12T02:14:00.002-06:00

I guess I have become a writer. I also know that my story has changed. I am closing this blog and beginning a new one. You can find me at Life After Caregiving. Of course, you may also follow Shiva's blog. She seems to be channeling Dennis at the moment and definitely has her own take on our world.

I hope you decide to join our journeys with us.

Ann, after Dennnis
Life After Caregiving

About Saturday, 1/08/2011

2011-01-10T03:47:00.000-06:00

Dennis woke me up about 12:30 with his gurgling in his throat. I got up and tried to suction it out and he bit down, and ended up nicking off the tip. I tried to reach it, but he bit me and it went further down the throat.

Despite his wishes, I had to call ER to see if they could get it out. There was no way that I could let something as silly as a blue piece of rubber be the death of him.

As we sat in ER, reading over his health care directive with the doctor, I was writing a blog entry in my mind. I was going to make it a light story, and end it with "he is resting well at home."

But that was not to be the case.

I was on the phone all evening with the on-call hospice nurse. We were trying to figure out a way to get him back home once the little blue devil had been removed. We worked together on getting oxygen for him at home by 4:30 AM, then moved it to 8:00 AM when it was apparent we were not going to get home before sunrise.

The ER staff recommended a few things that were not heroic. They were unable to reach the blue devil, but with a camera at the end of a tube they were able to spot it laying on top of his voice cord. Dennis was clenching his jaw. In the very tiny recesses of my mind, I suppose I knew that was his was of saying "No", but it wasn't making much sense to me at that moment. Someone said this is a natural reflex and I said go ahead.

They sedated him because he was still holding his mouth shut at all costs. I opened one of his lids and he was still sparkling, looking at me with love. I asked him if he would cooperate and open his mouth and he squeezed my hand, saying yes. Looking back, I know he was just doing this for me.

Within minutes it had been removed and I cheered, but one nurse said - "not yet." They injected him with something to counter-act the sedative and with the aid of a mask and a hand held pump, they got him breathing again. Not entirely on his own, but he was breathing. The nurse and I rubbed his chest and encouraged him to breath. As we did this he would take deeper breaths on his own.

Then they told me he had pneumonia and would need to stay at the hospital. I said I wanted him treated at home. I was told it would be impossible to transport him at this time, and that he would need to stay for a while. They changed the hand-held pump to a machine to support his breathing. The antibiotics were then started.

Then they tried to suction him out. He spewed out green bile all over the place - both out his nose and mouth. I took this as a good sign; they were clearing his lungs and he would be home for our 8:30 appointment with the hospice pharmacy and visiting nurse.

He was stable, and I asked if I could leave to drive the 2 miles to my house, brush my teeth and feed the cat. "Yes! I am right here watching and he is doing great." I returned 20 minutes later and they were preparing to move him to a room. I followed along.

Dennis has had cases of pneumonia before, and I figured he was going to general population. But we stopped on the ICU floor. He was wheeled into a room, surrounded by nurses and doctors asking questions, changing his breathing mask, trying to suction him again, giving him more drugs......

After I was able to reorient myself, I asked the doctor how long they were going to keep up this drug routine.

Until he can breath on his own.

How long will that be?

I don't know.

Is this worth it, I asked him - will he improve?

Are you asking will he ever leave the hospital?

I suppose that is one way to put it.

I have very little doubt that he will ever leave here.

Then we need to pull off the oxygen, all the other supports and let him go now.

So they did. The nurse pulled him over to one side of the bed, and made room for me. She removed the mask and removed the wires and all the other jazz that was standing in my way of holding him close to me. And I held him. I held him until he took his last breath. I held him for a few more minutes and then left the room to tell the doctor. He was pronounced dead at 8:30 on January 8, 2011.

Until a bit later,
Ann, without Dennis

Dennis Died

2011-01-08T09:51:00.000-06:00

I don't know what else to say right now. He died of complications due to his MSA.

Thank you for following my blog.

Beginning the Art of Dying

2011-01-06T17:41:00.001-06:00

What a whirlwind week. Bed in and bed out. Old feeding pump leaving and a new one arriving. Nurse visit, social worker visit, Pastor and another nurse visit. A few new medications, including a patch to dry up the mouth, a dressing called a skeleton band aid for the bedsores and morphine, something Dennis has always dreamed of trying. Two new PCAs interviewing and filling out applications. Calls and emails to inform family and friends of a change in Dennis' care.

Yes, it's been busy, but everyday that something new happens, it's been good. Every person that has come into the condo has been friendly and caring. Each visit has assured us that we have made the right decision to begin hospice care for Dennis.

For the first time in a very long time, I don't feel over-whelmed. For the first time in a long time, Dennis feels free of pain. For the first time in a long, long time, we both have slept through the night.

This may not be a time for great joy, but it is a time for gratitude.

As Dennis said today, we made the right decision once again.

Ann and Dennis

Dennis' New Bed

2011-01-05T10:33:00.000-06:00

Our new hospice organization already supplied Dennis with a new bed. It is a pressure guard mattress. Since I can't explain it well, I have put the link to the particular mattress that he has right here.

Dennis' New Bed

It is eligible for medicare reimbursement, according to the ad.

I am not promoting this particular model, but I am promoting the type of bed. Dennis slept like a baby. Until last night, he had only used his medical bed twice. Now I am sure that I won't be able to keep him out of it!

As for me, I slept through the night for the first time in months. There were no wake up calls for repositioning because the bed automatically does this for Dennis.

I know that some of you out there are dealing with positioning issues and bed sores. If you are, I highly recommend that you find a way to get one of these beds into your home.

Of course, tonight might be different. Stay tuned.

Hospice, Part III

2011-01-04T04:11:00.000-06:00

We found the right hospice.

Do you know that feeling, when someone walks in the room, that the decision is really already made? It wasn't quite that easy, or that swift, but it was close.

When I talked with my therapist last week, I mentioned that I had diagnosed Dennis long before his doctors had given his disease a name. Then we were talking about the last hospice we interviewed and the problem with the feeding tube. I didn't want to do the fighting on this one/ I am tired and I knew the right person could find away around the feeding tube dilemma without having to play games.

So I went online again and looked for a new hospice team. I wrote to two agencies and let them know what our needs were. One wrote back saying they could not help and the other told me their mission was to meet the needs of the patient, whatever those needs were.

We met with them today and after ALL of our questions were answered, we signed up. We only met two of the staff today, but by the end of the week we will have met with two more. A new mattress for Dennis' bed that somehow adjusts his position through-out the night so I don't need to get up every two hours, has already been ordered.

I have been called a good advocate for Dennis, but maybe I am just trying to take care of myself. When he sleeps, I sleep. When he is in good care, I am happy.

This may not be the way we wanted life to turn out, but no matter how life rolls out for us, we always manage to find good people to help us along.

Sugar in the Morning, Sugar in the Evening

2010-12-30T18:41:00.000-06:00

With Jane and Ralph finally here from London, we are ready to celebrate Christmas on New Years Eve. Secretly Dennis and I will also be celebrating our 10th Anniversary. Neither of us believe he will make it to our real anniversary date in May.

Yesterday was a day filled with frustration and anger. Dennis had an appointment for a feeding tube change and I asked Raquel if she would take him by herself. It did not turn out well. They exchanged unkind words and he came home angry and she came back crying. I let her go for the day.

Then Dennis and I joined Jane, Ralph, Hamed and Ashely for lunch at a local Persian/Turkish restaurant and Dennis was still in a mood and I was angry with him for running off Raquel. We made it through lunch, but the drive home was a bit hincky.

A new perspective came to me this morning. I have too many rules that I have put in place to keep Dennis alive longer. He can't have anything with sugar, corn syrup, dairy products, etc - anything that causes phlegm build-up. He can't eat anything after 2 pm, because he just spits it up and makes a mess for me to clean up. He can't eat in the car for the same reason.

All of these rules are in place for his benefit - or are they? I really prefer not having to vacuum out the crap in his throat each night from over indulging on sugary stuff. His doctor did say no more food so he would not choke at night. I hate cleaning the floor every day, every where he has decided to munch on food.

I could give up any kind of food so easily, but Dennis lives for food. Other than me, food is his number one love. Especially anything with sugar. He lives for desert. My sister understands this - she makes sure he always has a pie whenever he comes over.

This morning I understood that I was taking away his life from him. Oh, I was doing everything that I could to lengthen his life, but I wasn't giving him what he really wants - control over his own life.

So after today (so he can eat and talk tomorrow) he can eat and do whatever he wants. If he wants sugar, he can have it. Chips, not a problem. A bag of sugar, a cookie, whatever he wants, whenever he wants it. I will dig the food he cannot swallow out of his mouth. I will pick up the spills and spit from the floor and his chest. And I will not complain.

I did sob and cry and sob some more all day, though. I don't want him to die. But he will, he is dying. And I don't want to fight with him anymore about anything. We just do not have that much time together anymore.

Until later,
Dennis and Ann

Just the Two of Us

2010-12-29T10:25:00.000-06:00

It isn't easy for Dennis to move, but every once in a while we manage to find a way to hold hands. Here we are in the champagne/martini bar before dinner while on the cruise.

This is the two of us at the back deck of the ship. We sat here and watched the ship go through the Panama canal from this spot. It had both shade and sun - something for each of us.

And finally, a picture of us sharing a kiss beside the Christmas tree.

Until later,
Ann and Dennis

Lima, Peru Colores

2010-12-29T09:02:00.000-06:00

Through out South America, color abounds. Some areas of Lima have multiple colors like the picture above. Side by side you will see rose colors, rust colors, blues and the mustard yellows (painted for a pope visit - his favorite color).

The government center was all a whitish gray, however. This color was only broken up by the cars, the guards and the Santa Claus waving to the crowds.

The changing of the guards was slower than molasses, and after 1/2 hour we had to stop watching. First a band what I assume was the national song two times. Then the new guard came out and slowly marched down the stairs and began to cross to where the guards leaving duty were situated.

It was all very regal. Lastly, in the center of the government plaza were several gardens of marigolds.

We enjoyed Lima, but as on any cruise you only get a small taste of what is available to see. I believe Lima is a place that I will put on my bucket list for the future. What we saw, we liked.

Until later
Ann (finally feeling a bit better) and Dennis (in for a tube change today)

Hospice, Part II

2010-12-28T16:31:00.000-06:00

I had my 50 minute hour with my therapist yesterday, crawling in on my hands and knees. I came away feeling stronger and ready to fight in spite of how my body feels.

I will not settle for a social worker that says "NO" to a feeding tube. A good social worker will fight and scrape to find a way to get what the client needs.

So last night I wrote to a few different agencies that provide hospice/palliative care. And today I received a response from one that is willing to work around the feeding tube business.

We have an appointment next Monday at our home. Maybe they will be a good fit. Maybe not. But at least, once again, I have not given into the rules. One thing I have learned over the years is that there are no absolutes. And today I am feeling strong enough, once again, to find the right fit for Dennis.

And Jane and Ralph are both coming home sometime today. Life is good, once again.

Until later,
Ann and Dennis

Thanks, Tracy

2010-12-26T10:12:00.000-06:00

This article regarding hospice care was sent to me by Tracy. Thank you Tracy for sending it to me. I thought it warranted posting a link here for others.

http://www.hospicepatients.org/hospic28.html

This article discusses, among other things, how it may be possible to get around the issue of a feeding tube while having hospice care at home.

My fever is roaring and Dennis pooped in his sleep again, so I am in a rotten mood. I will say no more.

Tomorrow

2010-12-25T19:22:00.000-06:00

I am tired and probably should not be doing a blog entry right now. But here I go, anyway.

This has been a boring Christmas. I have an airport cold, and Dennis is as needy as ever. Naturally there is no help because of the holidays and I have become spoiled. I had to cancel dinner with my nephew and his girlfriend. I just could not get Dennis ready and dinner ready and maintain a smile on my face.

So we are stuck with $100 dollars worth of food that I don't particularly like and Dennis cannot eat.

Yes, I am complaining. LOUDLY.

I will admit that I am unhappy. This is most likely Dennis' last Christmas and neither of us enjoyed much of the day. We did watch Penelope late in the afternoon, and we were able to smile a bit, but it just was not quite right.

Even though Dennis has been pooping at night in bed, after clean up the pressure sore seems to be improving. But I am not a nurse or doctor, so I don't always know what I am looking for in a problem.

Enough complaining. Tomorrow may be better. I mean, tomorrow will be better. It's only a day away.

Ann and Dennis

Pressure sores

2010-12-25T03:54:00.000-06:00

Off the topic of travel for a moment.

Pressure sores. They used to be called bed sores, but obviously times have once again called for a new label that is more acceptable. This one actually makes sense to me. Tissue is damaged from too much pressure on one particular area of the body. While this may happen from being in one position in bed, it may also happen because a person is wheel chair bound.

Dennis is beginning to develop pressure sores. What do I do? I call the doctor, I look up information on the Internet, I check out the Mayo clinic site and blah, blah, blah. What do I get?

A bunch of contradictory information.

Keep it dry. Keep it moist. Bandage it. Don't bandage it. Move the patient every 15 minutes (yet another toil on my sleep). Again, blah, blah, blah.

It seems to me that bed sores have been around as long as man has existed. How can it be that there is not a real treatment for such an every day occurrence? Have we, as a medical field and a society, just ignored the pain a patient must be in once bound to a bed or a chair? Why hasn't anyone warned me about this before it became a problem?

Okay, I am frustrated. I am sick myself, and since it is a holiday, I have no help. My sister and brother in law are not here because of bad weather (3 inches of snow) in London and some paper work that the US requires for visitors (Ralph is still considered a visitor). I invited Hamed and Ashley over for Christmas Day, and I feel like shit. So perhaps this is not the best time for me to write about such a common ailment.

Maybe I should just make myself a hot brandy (I actually do have brandy in the house for my "famous" Christmas coffee) and try to go back to sleep.

And, no, there will not be a picture today!

Until later,
Ann and Dennis

Arica, Chile

2010-12-24T17:08:00.001-06:00

In Arica, Chile, we found an area that had geoglyphs. In the picture above you can see the remmanents of an old community and the geoglyphs below. Some believe they were works of art, others believe they were used for communication between communities. At least this is what I was able to figure out with my Spanglish.

We all fell in love with Arica. It is a desert with tons of sunshine. The locals were beyond friendly and went out of their way to please. I think I would love to return there one day soon.

As we entered the port, we were greeted with this image.

Since cars were not allowed up the hill to see the view, we were unable to climb to the top. Neither Raquel or I were inclined to push Dennis up the hill. In reality, I wasn't all that interested in the hike and Dennis made a good excuse for laziness.

As we feasted on cheese empanadas, fries, spicy chicken and cold beers, I knew I had landed in a little piece of heaven.

Ann and Dennis

Lima

2010-12-24T08:25:00.000-06:00

Since it is Christmas Eve, I thought I would post a picture of a manger scene from Peru. We were in Lima, and saw many different types of manger scenes - most tacky, some colorful and some, like this one, rather regal. This particular manger scene was in the government section of Lima.

However, do you notice that there is no baby Jesus?

I am not going to pretend to understand other cultures, let alone the catholic faith. I am a traveler, but mostly an observer of life, seldom a scholar. I have no idea why the cradle was empty, and my Spanglish is very, very limited.

In Lima there were several tours that were suggested by the cruise line, but none were set up for a disabled person. So we simply hired a taxi driver and asked him to take us to places he wanted to share. He took us to the old town center (I may have mentioned we like this) and the government center was in the old town. So was a museum that housed the bones of many, many, many dead people. For some reason, the monks that buried the bones, decided to divide the bones up by size. There were piles of femurs, piles of skulls and piles of hip bones. Pictures were not allowed, and neither was Dennis.

He was allowed into a museum, however, that had mummies on display. They had been preserved in the simplest of manners, with banana leaves and such. Here is a picture of a baby that was several hundred years old.

South America, in the ports we visited, does have a long way to in means of accessibility. But the people we met were kind and helpful. And that goes a lot further in my little book than almost anything else.

Dennis and Ann

The Local Loco

2010-12-23T16:32:00.000-06:00

I am starting with this picture, because it comes attached with one of my favorite stories from our trip. Our last stop before the disembarking stop was La Serena, Chile. It is a small fishing village located in a bay. On the opposite side of the bay is a developing tourist area. We did not make it over to the tourist area - we usually prefer to hang out where the locals spend there time.

There were quite a few fishing boats that had docked before we arrived and the fish were cleaned and ready for sale. But several sea lions and pelicans were still looking for more entrails, bait fish and other assorted foods to fill there bellies. I don't think this little cutie has ever had to hunt for his own food.

Dennis wants to return to this earth as a pelican, so I had to include a picture of these guys too. Frankly, I think his karma is quite a bit higher than a pelican, but then again, maybe this is the easy life that he deserves next time. He has promised to come to me if he ever sees me on a beach somewhere out in this big old world. And I will call "Danielito" every time I see some pelicans, just in case.

After we finished taking in the scene, we entered the restaurant area of the village - all serving the catch of the day. I ordered a pisco sour for all of us because a person is not supposed to leave Chile without trying at least one, since it is the National Drink. It's a bit of a cross between a Daquari and a Margarita.

Then we ordered empenadas. Dennis and Raquel were not feeling so well, so they went for the cheese filling. I could not leave without downing some fresh seafood and I ordered one filled with the catch of the day. Out came a meal in a pocket - it was the size of two fists put together. It was delicious.

There was a single man sitting at a table behind Dennis and Raquel, but in my view. He started at us the whole time. Not a luring stare, or a curious stare, but a very menacing stare. He was talking into a phone and playing with his hair. He wasn't really eating, though he had food in front of him.

All of a sudden Dennis started chocking. I dashed out of my seat and started a Heimlich while Raquel and the table of people behind me pushed the table away and called for help. It was all over in a minute, and we went back to enjoying our food.

A few minutes later, the people at the table behind us began to leave. The woman spoke English and said she didn't want to scare us, but the man that had been staring at us was calling the authorities. He was ranting about how I was trying to kill my husband and he had witnessed the whole thing. The waitress came over and hid our pisco sours, trying to protect us in case the police did show up.

The dude then left the restaurant, and we paid our bill and left too.

We named him the Local Loco. Raquel and the waitress figured he was taking some sort of drugs. I think he was simply delusional. Whatever, we made it out safe and sound, and Dennis survived his latest chocking event.

It's nice to have my computer back!

Ann and Dennis

Home Again

2010-12-21T10:23:00.000-06:00

What a wonderful trip. It turns out that it was a "repositioning" cruise, so it really was a once in a life time trip. We visited Columbia, went through the Panama Canal, Ecuador, Peru and Chile. It was spring, for most of the trip, and I even found myself with a bit of a tan at the end.

Dennis did fairly well. We decided to skip the doctor's orders and let him eat. But I was strict about the dairy and sugar. Of course, he was always trying to get Raquel to give him some sweets when I wasn't around, but she just told him she did not want to face Ann's wrath later.

I am busy unpacking, washing clothes and Christmas shopping this week, and my computer is still in the shop. I won't be blogging much, but promise to catch up with some pictures and stories soon.

In the meantime, I wish you all the happiest of holidays and a very, very merry New Year.

Ann and Dennis

Vacation

2010-12-01T10:50:00.000-06:00

We are headed out early Sunday morning for our cruise. The three of us (yes, we are taking Raquel again) will leave from Miami, make a stop in Columbia and the we cruise through the Panama Canal. After that we head down the west side of South America, making stops in Ecuador, Peru and Chile. Two weeks of warm weather and sun.

I ask that anyone who has a few moments each day, to send positive thoughts down our way. I know that sounds strange since we are vacationing, but Dennis has not being doing well lately. He has been waking at 3 am gasping for breath. He is breathing through a nights worth of plegm gurgling in his throat. We spend the next few hours suctioning, nebbing, and repositioning. We are both exhausted.

Dennis is now unable to eat any food. At least that is what the doctor ordered. How well he will follow this order remains to be seen. We hope that it will decrease the plegm and increase the sleep.

Look for pictures in a few weeks.

Until later,
Ann and Dennis

Figuring it Out

2010-11-28T17:02:00.001-06:00

I have said it before, and I will say it again. I was not cut out to be a carer.

Years and years and years ago, I thought about becoming a nurse. I did not like the chemistry classes - or at least that is what I told myself. Then I considered a special education license - but it was way too much for me. When a 30 something put her hands in her pants and told me she could not have sex tonight, I freaked out. I left school for the next 10 years.

I have grown up a bit since then, but not so much that I don't gag at picking poop off of a butt full of hair. I don't like digging for the phloem in the throat or changing a diaper for the third time in a day. It's good I did not become a nurse.

I do love this man, but 4 days alone with his neediness is enough to cause thoughts of of self-suicide. I am a loving person, and I do adore Dennis, but he is sooooo needy and soooooo full of complaints.

I tried, again, to explain to him that I need my "bank" to be filled. Complaints only deplete the bank. The simplest of complaints can bring me to my knees. I need to be filled.

And, as Dennis does, he finally listened. He needed to be nebbed and suctioned out at 5am this morning, and he thanked me. And then he thanked me again.

I wish he could fill my bank by making me dinner, or setting out wine and cheese. I wish It could be easy for both of us. But mostly I need a lack of complaints. I just need thanks and acceptance. I am far from perfect, but I try very hard. I need acknowledgement. That's not so much - but it may be difficult for us to figure out.

Ann and Dennis

Thanksgiving

2010-11-27T13:27:00.000-06:00

We had a terrific Thanksgiving and perhaps a new family tradition is beginning.

I really wanted company for Thanksgiving. Last year Thanksgiving came right after our mother died. Jane and Ralph were here, so we did have a dinner, but it was mixed with exhaustion and emotions.

This year I decided to ask Ashley's family over. Ashley is Hamed''s girlfriend. Her mother, Sherry and father, Steve and 18 year old brother, Drew, joined us for dinner, dessert and games.

We played Trivial Pursuit with the boys against the girls. Dennis may not have a body that functions, but his brain is in perfect order. The stinker new the answer to almost every question. I had to translate for him, but he was good. And he laughed! Oh, how he laughed and bragged and laughed some more.

He also ate lots of food. Most of the dinner was soft, mushy food, and he piled on the gravy and with my feeding him, he gobbled down a fairly good sized plate of food.

About 6 pm he wanted to go to bed, but encouraged everyone to stay as long as they wanted. After I got him set up in bed, Ashley and I looked at each other and both said how surprised we were at how well he did. It was the best I have seen him in a long time.

I know he loves Thanksgiving dinner, and he like the energy that Hamed and Ashley bring when they visit. But it was almost like good old Dennis for a day.

This brought a smile to my face that most likely won't leave for quite some time.

I hope your Thanksgiving was a blessing, too.

Ann and Dennis

Hospise

2010-11-24T03:35:00.000-06:00

We had a hospice worker come out an explain the process and the services offered by hospice. While we are not quite ready for hospice yet, we are getting close.

Dennis is barely breathing and has been having panic attacks lately. Other changes are coming at us rapidly. He no longer can walk in the hallway. He takes a half a trip around the table and that seems to be the end of it. Which has also led to a weeks worth of constipation. The walks have gotten him going for quite some time now, and we are relying more on drugs than the walks.

Yes, we are still going on the cruise and yes, we have great travel insurance in case something goes wrong. We know that we will need to take it very, very easy during this trip, but that is okay. I have new books for my Sony Reader and we can always find a seat in a covered deck to watch the ocean and world go by. I think I will spend sometime reading to Dennis - I will take along one of his favorite poetry books and the information we just received on hospice.

Life goes on, day by day. And, somehow, we remain happy and looking forward to tomorrow.

Until later,
Ann and Dennis

Another Poem by Poppie

2010-11-23T10:18:00.000-06:00

January 2009
Poppie was thriving at school in London taking her silver smithing classes.

A leaf flutters down and nudges by the seeds
that you planted there many years ago.
Did you know that some seeds of thought have wings\?
Look there, that flash of golden flameâ€¦
is it just a wind bruised leaf or an oracle of kind?
That crescent moon seems hell bent on guiding me into uncertainty,
and I care little tonight of itâ€™s cosmic touch,
for it is veiled with trapped agate rays of sorrow
So if I chose to drop my heart down in the gutterâ€¦
the cause will be a certain sadness set never to repair nor reveal
Or blow on the dandelionâ€¦
knowing only too well it will not carry with it that one wish.
Oh these silver tears in vain,
do I weep, save from the majesty that is tomorrowâ€¦.
When hammer strikes with my skilled hands
the precious metal
Forming something of dignified beauty,
inspired by the strain and joy
of earths mosaic and of late winters promise of spring.

Anger

2010-11-22T18:22:00.000-06:00

I had my second session with a therapist today. She is an accident that turned out to be a perfect match for me. It was great to have someone who listened and really heard what I said. It was also nice that a tear or two is a normal event in her office.

She suggested that I talk about the emotions I feel when dealing with Dennis' disease. The first word that came out was anger.

So let's talk about this, Ann.

I am angry that this disease attacked the only man that I have really loved. I am angry that this disease attacked the only man that truly loved me. I am angry at the powers that be that ignore diseases that do not have a famous person to turn to as a spokesperson. I am angry that neurological disorders haven't been figured out. I am angry that the government paper work is not really reduced, but actually increased. I am angry that I have to call one hundred people to find an answer to a silly question. I am angry.

Whew.

I didn't know I was that angry.

Wait until we get to the word frustration.

Until later,
Ann and Dennis

Death of a Friend

2010-11-21T10:37:00.000-06:00

A very dear friend has died. Not of MSA, but of chronic mental illness.

Some of you may know her through some of my posts. Poppie was my "adopted" Irish daughter. We met online, but happily also met in person many times. We were together in London, where she fell in love with Dennis. We met again in Dublin and once again in London. I met her partner, Michelle and their son (my adopted grandson), too. I loved them all.

She wrote a poem for me - she was a poet like Dennis - after our first meeting. I want to share it with you today.

Mom…

I thought of you today..

As I often do in that misted dawn way

When light has yet to fully caress my eyes

Our sounds bless my ears…

made coffee and sang along to Ella,

musing as to why you were so memorable to me..

Moods swirled with the milk and sun surrounded

The window I adorned

and I concluded logically…..

to have dreamed you distant in time.

The tears that would follow,

cleansed a whole lifetime of grief

your words…only once heard…

and I hear a resonance of ’beautiful girl’

my face pressed against crisp cotton

to soak up the pool of fresh love.

No shame in this feeling, for….

forever you have been suspended

in this child’s imagination…

I love you, for now being true.

My History of Art book

has pressed an early spring flower face

much more contented now.

the yellowed orb is appearing high in the sky

and drowning the cold of night.

Poppie

Oct 29^th 07

A Difficult Morning

2010-11-19T11:15:00.000-06:00

Dennis had a very restless sleep last night and woke up crying his eyes out. He is scared, worried, and everything else right now. He asked to die and then he cried and said he wanted to live.

It hasn't helped that I have been working 8 hour days all week. He has gotten used to having me around. He feels my presence has a positive energy that keeps him going.

I have missed him too, and I have not been enjoying the 6AM alarm going off telling me I must get up and get to work. I wanted to stay home with him, but I was expected to open the training today. I knew that someone else would easily do this, but since I am the newest member of the team, I was reticent to not showing up. I was torn.

And I was already dressed.

So I went and opened the meeting and then left. Dennis was sitting at the table eating cheese cake and smiled his biggest smile when I walked through the door.

I guess we really do belong together.

Until later
Ann and Dennis

Shiva the Cat

2010-11-13T14:57:00.008-06:00

Things have been getting very heavy lately, and I decided life needed to lighten up a bit. So I started a new blog, told from our cat Shiva's POV.

I would love to have you visit my new blog called Shiva Speak. You can find it at:

http://shivathecat.blogspot.com/

I intend to keep up with this blog. But there are times when I want to write about other aspects of life. I hope that you will find that Shiva is fun, light-hearted and a distraction from care-giving and MSA.

Until later,
Ann and Dennis

The Lungs

2010-11-11T16:47:00.000-06:00

Dennis has been having more and more trouble breathing lately. His breaths are short and no matter how much we work with him, he seems unable to breath deeper. He also has been dealing with lots of phlem in the mornings and gurgling in his throat.

We made an appointment with his general practioner last week, and he suggested an appointment with a pulmonary specialist. Today he went in for a chest e-ray, a breath test and an appointment with a doctor to interpret the tests. The news was not so great.

It seems that the lungs are shutting down. Okay, I may come off as an idiot here, but I never knew the lungs were a muscle; I always thought the lungs were a organ. But, whatever, they are shutting down and they are not preforming as the ought.

Dennis is depressed. I suppose I am too.

But tomorrow we have a luncheon date with Hamed and Ashley, and they always cheer us up. That's what nephews and girlfriends are here for.

Until later,
Ann and Dennis

2010-11-09T09:38:00.000-06:00

Dennis' first ride using the Hoyer lift.

As with most things with Dennis these days, everything is a two person job. I had to wait until Raquel arrived to maneuver Dennis into the Hoyer and lift him up into his chair. It was a long night and Dennis is very down in the dumps. We both dog tired and frustrated, but thankfully we do not have a full agenda today.

Until Later,
Ann and Dennis

Dennis Falls Out of Bed

2010-11-09T02:56:00.000-06:00

It was bound to happen sooner or later. Dennis fell out of bed this morning and had to sleep on the floor. I am not sure if he is going to get any sleep, I know that I am not.

He was fussy all night. First he had to turn this way, and then that way. Then he got his hand stuck under him and wanted it moved out. After about 12:00 (I should have just watched to new Conan show), I knew sleep was not going to happen tonight. It was one thing after another. Finally he wanted to sit up in bed. I never like doing this, because he tips so easily, but he was insistent. About 20 minutes later I heard the thud. Dennis had fallen on the floor. At least there were no bruises or any blood. We have been extremely lucky.

And while Raquel and I broke the hoyer lift out of it's place of hiding, we never got around to practicing with it last week. So for tonight Dennis will have to do the rest of his fussing while laying on the floor.

It's been a difficult two or three weeks. A fall last weekend, an unannounced trip to the hospital last weekend, problems with medicaid and now this. Each problem takes its toll on each of us. I am so glad that I decided to retire. And now I am really looking forward to our cruise in 3 weeks. We need a break from reality for a bit.

Until later,
Ann and Dennis

Sawyer Glacier Movie

2010-11-08T08:44:00.001-06:00

It worked! I am always amazed when I am able to get one program to talk with another program. I am not afraid of any new technology, but always a bit of a skeptic.

Anyway, here is a movie of our cruise to Sawyer Glacier. The whole trip took about 4 hours and the boat slowly maneuvered it's way through narrow waters and bits of glacial meltdown. It was a beautiful afternoon in Alaska and Raquel was in charge of the camera. So thanks to her, we have a nice little movie to share with you.

Now why am I making photos into movies?

Two facts:

Those of you who have followed for a while know that my mother died rather tragically while living in an assisted facility last November. Some of you may know that in order for Dennis to receive financial assistance, he must have a job. He has a small at home job that pays him a little, but next year he must make more.

In comes resourceful Ann, as some of you have named me.

I went to the assisted living and asked if they would hire Dennis to share stories and pictures of his trip to the residents of the rehabilitation center. I thought it would be a win - win. Residents could see that a person with disabilities could still enjoy their lives, if they decided to do so. Dennis would be able to relive his beloved vacations, once again, and therefore live a bit longer.

So, while Dennis watched football yesterday, I put together (with his assistance) these two movies of past vacations. And I thought I would share them with you also, and perhaps inspire you or a loved one, or just let you enjoy our experiences.

Until later,
Ann and Dennis

More of Wales

2010-11-08T08:13:00.000-06:00

It was requested that

There were several requests for more pictures of Wales. Here is a movie of the Swansea area of Wales. Cross my fingers and hope it works. If it does, I will add more and tell the story of why I am making movies in another post.

Enjoy.

Persistence

2010-11-04T18:05:00.000-05:00

I am nothing, if not persistent. I might not always get what I want, but I usually get what I need. Or, as in this case, I will fight for those I love to get what they need.

Today I managed to fight the government, and I won. Dennis was reinstated into medical assistance today, and I even received an apology.

I have been calling all week, leaving messages, sending emails and calling again. Today I called three times before I finally received a return phone call. Without medical assistance, we would be paying $500/week for PCA help, $200/month for medicines. and $800/month for his feedings. I would have to work full time just to pay for his needs and my insurance. Then I would spend the rest of my time taking care of Dennis. I would be having my second heart attack very soon.

I think for all the work that Dennis has done in his life he deserves to be taken care of and be able to live a good life. I know I have friends and readers that don't believe that we should be paying taxes or the care of others. I don't know the answers, but I do know that our government spends way too much money on red tape issues.

Whatever your beliefs, keep persistent. I only hope that everyone out there has someone to fight their fight if they are unable. I hope, if the time comes, someone will fight for me. And I hope that you have all the support you need in your life.

Until later,
Ann and Dennis

Until later

Hospice

2010-11-02T18:48:00.000-05:00

We visited Dennis' general practitioner today. We had a load of questions, some possible answers and then we asked the tough question. Hospice Care?

A couple of years ago I participated in a survey on hospice care. I found out that very few people take advantage of all that hospice care has to offer. A person with a certain "death sentence" has up to six months to use hospice care. But there are exceptions. We are hoping that since we don't know when Dennis will die, that he will be able to have help come in for as long as he needs it. That may be one month or one year. Or maybe longer.

Most people take advantage of hospice care only in the last few days of their lives. But my understanding is that it can be so much more. I guess we will find out after our visit that is still to be set up. We have only taken the first steps - asking for help.

It's been a traumatic few days. Once again, by being open and honest with each other, I believe we have moved ahead once again. I hope that we are doing right by each other and that we are living best by keeping the movement going forward.

Until later,
Ann and Dennis

Another Fall

2010-10-31T17:36:00.000-05:00

It's late Sunday and we are covered in vomit and poop and a bit of blood. Dennis went out for one of his infamous walk for poo cruises around the hall with me. It was obvious he wasn't going a second round about half way through.

Then he got anxious. "I'm gonna fall...I'm gonna fall...I'm gonna fall..." Repeat, repeat and repeat again until the wish comes true.

And so, just a few feet shy of the bathroom, he did fall. And he took me down with him. After untangling ourselves, a few incompetent attempts at getting him up at the floor, I called 911. "He's fallen and I can't get him up." If I hadn't been so out of breath and frustrated, I probably would have laughed at what came out of my mouth.

The rescue team came quickly and the three of us were able to get him up into his chair.

It's time to break out the Hoyer.

Until later,
Ann and Dennis

Drama Free Hopes

2010-10-30T15:35:00.000-05:00

I was exhausted, and wanted to sleep in for a little while this morning. The red walls took more time and coats of paint than I had hoped, and Dennis had been high maintenance for the past 2 weeks. I was looking for a drama free weekend.

But, ten minutes after Natalie, our Saturday morning PCA, had arrived, she knocked on the bedroom door to tell me the tube was clogged. So I crawled out of bed, and pushed hot water in and out, until the tube finally burst open. Back to Methodist Hospital, once again.

Natalie came along, and she and I had plenty of time to talk. She is a smart gal, and we both enjoy her presence in our house. She comes from a completely dysfunctional family, and yet came out on the top of life. She is one of the resilient children of her generation. Don't ask what I mean by that because I am not sure; it simply seems to be a correct statement.

Anyway, drama free doesn't seem to be the particular label for the weekend. And I am still tired, and I know that Dennis will wake me at 4 or 5 am once again tomorrow. Maybe, just because it's Halloween tomorrow, he will give me a big surprise by sleeping in himself. HA!!

Until later,
Ann and Dennis

Vacuuming

2010-10-28T08:02:00.000-05:00

No, not vacuuming the floors or rugs, but vacuuming out Dennis' throat. Yes, there is such a machine and we do have one.

I suppose this is another way of saying that Dennis is having more and more difficulty swallowing every day.

Which also could be another way of saying that I am grateful that he has a feeding tube.

Dennis fought the feeding tube for a while, but he began to drop weight at a high rate, and finally agreed. At first it was a gravity feed or a bolus feeding. He wanted bolus feedings (carer holding a tube of food for 30 minutes while it dripped in) during the day, and then only sporadically. Then he began to complain of acid reflux. He went through all the medications that his part D medicare would allow, but no luck. So we tried feeding at night with Dennis' head slight raised. Still stomach problems.

Eventually the gastric tube was changed to a J/G tube and this required a feeding pump. The acid reflux disappeared. And, except for the clogging, the explosions of a tube full of water or sticky food, and the pump not working in the UK, it has improved his life immensely.

So, if you or someone you know, are having difficultly swallowing, there are options. They aren't pretty, they aren't easy, they aren't very often fun. But if there is a will to live, these inconveniences my be worth it for you, too.

And there goes the vacuum, once again.

Until later,
Ann and Dennis

Monitoring Dennis

2010-10-25T12:48:00.000-05:00

Dennis has been waking up gurgling almost every morning for the past two weeks. Today, when I came home from my workout, he was in bed. When I left he was planning on going to the Courage Center for his own workout.

We have been pumping water into his g-tube constantly, and he has been using the nebulizer almost daily, but he is still gurgling. We are monitoring his oxygen level, and it's low, but not "frightfully" low. He has a temp, but not an "alarmingly" high temp.

We are trying to avoid going to the hospital, but I think he may be on the verge on bacterial pneumonia once again.

Aargghhhh.

Until later,
Ann and Dennis

For Judy (and everyone else too)

2010-10-21T12:46:00.000-05:00

Judy,

You asked for an answer to a comment you left on my last post - Jealousy.

"I'm Judy from California. It was comforting to hear the patients point of view. I have MSA with very low blood pressure so I am not able to sit up. I am bed bound with 24 hour caregivers. A friend is typing this comment for me. I am able to eat soft solid foods. I understand Dennis's comments about normal people. I am interested in your other experiences with this disease. How others interpret the illness is often not what I are experiencing. I find this very frustrating. I dislike being told I'm not thirsty when I ask for a drink of water, just because I had some recently. I look forward to a response. Judy"

I can't answer you. I am a carer, and my view-point is that of a loving partner, who does interpret what Dennis is going through. I, too, would feel frustrated if I asked for water and was told I couldn't be thirsty. Perhaps you need to have a conversation with your care-givers. I don't know. I just don't.

There are blogs out there that are told from the MSA point of view. One of my favorite bloggers is Dan - We will go on. His blog is listed on the right side of my blog - blogs I follow. There are others, too, but Dan keeps up with on a very regular basis.

I would also encourage you to visit the yahoo groups at shydrager.yahoogroups.com. Pam does an excellent job of letting carers and patients speak their minds in a safe atmosphere. She also keeps on top of new research and shares openly.

No one person in this world sees the world as any other person. We each have our own perspective on everything and everyone that is around us. Perhaps this is compounded when one person is ill and another is not. I do not know.

What I do know is that Dennis knows that I love him with all my heart, and would do anything and everything for him. I know that I will only let loving and competent people work with him. I know that Dennis adores me, and loves me, even when we are frustrated with each other. I know that he wants a new brain, and God knows that I wish I could give him that.

You are more than welcome to read my blog at anytime, Judy. But it will always be written from my point-of-view. It's the only perspective that I have.

Until later,
Ann and Dennis

Jealousy

2010-10-19T14:33:00.000-05:00

Yesterday, Dennis told me that he hated me. I was a bit taken aback, since I had been working most of the day, and had just arrived home. He had some food stuck in his mouth, and I reached in to his mouth to remove the mucky mess. That's when he said he hated me.

I just walked away, and started watching my latest TV passion - Weeds. I stream it from Netflix onto our Wii, and I watch about 2 episodes an evening. Dennis eventually asked to come and sit by me in the living area and watched an episode with me.

Then he asked to go to bed. It was only 5:30 pm. I didn't argue and put him into bed in a propped up position so he could watch football and hockey and America's Next Top Model (sports and models, his two passions). A while later I returned to give him his meds, and even later to start his nightly feeding. It wasn't that we didn't talk, it's was just that I could tell he was in a funk. I knew he would tell me when he was ready.

It wasn't until this morning, when he woke me with a gurgling throat and I needed to prop him up, one more time. Then he told me that he told me he hated me because I was normal. I could eat by myself, put myself to bed, sit up in bed when I wanted and roll over in the night when I needed.

This is a picture of Dennis propped up in the morning - every pillow type thing we own just to sit him more or less upright so he could swallow everything that gathers in our throats over night. Most of us can simply cough out a bit of phlegm , but it isn't as easy for Dennis. Of course he hates my normalcy. He wants to be normal.

Pardon the language, but shit - this just won't happen.

We do still have a life that others would dream of having. But it's not normal, not for either one of us. And it never will be again. But it is our normal, and others may be jealous of what we have. Right now, it's Dennis being jealous of me.

And there it is - life.

Until later,
Ann and Dennis

Two Helpful Links

2010-10-16T08:53:00.001-05:00

I have been intending to add some links to my blog that may be helpful to others, but I have been a bit busy and forgetful lately. I will get around to it when it gets cold and we get home from our next vacation. For now, here are two links that I think you will all find interesting.

The first is simply the best idea ever - World MSA Day. I found out about too late to do anything this year, but next year I hope to plan something for awareness in my area. Perhaps you will wish to do the same. Her is the link.

http://www.world-msa-day.org/World-MSA-Day/Welcome.html.html

The next one I found through the Shy Drager support group on Yahoo. I know that all of us have had difficulty talking about MSA/Shy-Drager with others, even our doctors. This dude, Paul, made a pamphlet explaining the disease and it is wonderful. It's written in simple language and it's very well done.

http://tinyurl.com/PDCANADA-MSA

I hope that these two links will get you thinking today.

I received an update from the yahoo groups today, and there was a link for a clinical study that those of you in earlier stages of MSA may be interested in pursuing. Dennis does not qualify because of his severe speech and swallowing impairment, but I hope some one out there will qualify.

http://www.clinicaltrials.gov/ct2/show/NCT00977665?term=rasagiline+msa&rank

When?

2010-10-15T04:08:00.000-05:00

I am up at 3:00 AM. Dennis is squawking and breathing heavy, but that's probably not why I cannot sleep. Some nights, sleep is just not easy.

A reader left a comment the other day for another reader. It was regarding how do you know when it's time to move a loved one from home to another living situation.

How do you know?

From his short stint in an after care program at a nursing home 2 1/2 years ago, I know that Dennis would quickly die if he were put in a nursing home. We have talked and have decided that when he is ready to let go, I will cut off the feeding at night and have hospice care in the home.

But I know that is not the right choice for everyone.

I was lucky with my mother, too. When my father died last year, she decided she wanted to live near me, but not with me. She and my father had the discussion years ago, and knew they would never want to live with their children. I don't know what that says about us kids, but I choose to believe they were asking what was right for all of us.

It's not easy to know when to make a change, but I do believe that by talking honestly, you come to the best decision for everyone. You may (probably will) make mistakes along the way, but if it is done with love, I am positive it will work out in the long run.

Until later,
Ann and Dennis

Double Happiness

2010-10-13T10:37:00.000-05:00

When not working in my new consulting job, or taking care of Dennis, I paint. I started working with symbols lately, and I am really enjoying having the time to be creative. It helps that Dennis is not only supportive, but encourages me. This painting has three Chinese characters for double happiness.

Double happiness is something that we all deserve. I am a believer in creating your own happiness. It's not always easy to be happy when surrounded with situations that can cause sorrow, but I believe it is possible.

Dennis makes me happy.
Painting makes me happy.
My new job makes me happy.
My family makes me happy.
Planning the next trip on the list makes me happy.
My friends make me happy.
Raquel makes me happy, especially when I watch her take such good care of my honey.
My readers make me happy - thank you!

But now I must go to the gym. I don't like it, but the way I feel after makes me happy. Maybe not double happy, but happy. And when I come home, I have the rest of the day to paint while Raquel works with Dennis. And that will make me double happy!

Until Later,
Ann and Dennis

Don't Watch the Video Until After You Have Read The Post

2010-10-12T09:12:00.000-05:00

Jet lag and hurt feelings have subsided, and I am back working at my new part-time job. I have scheduled 3 weeks worth of visits to schools to meet staff, encourage, and congratulate everyone on any progress they have made. It's nice to work and get out and about. It's great that my boss is so accomodating about when I do my work. I like consulting work.

On our trip to England I learned that I cannot travel with Dennis alone. Maybe for a few days, but two weeks was overwhelming. He can do so little for himself anymore. I feel as if I am doing the eating, the walking, the talking, the everything for two people. When he needed a day off, I did too. It was a great trip, and Ralph and Jane were wonderful about helping, but it's all the personal care and the lifting that gets to be too much. So Raquel will travel with us from now on, or we will find a temporary agency to give us help if she cannot come.

He no longer can feed himself, but he is still able to each very soft food as long as it is early in the day. At least by feeding him, we keep the mess to a minimum. This means less laundry and less sweeping. Who could complain about that?

Saturday we attended National Karate's big tournament in Minneapolis. National Karate is the company that my nephew, Hamed, works for. He is considered to be one of the top guys in his category. He is a small guy, but all muscle and lots of flexibility. We were not able to stay long enough to see the final sparring event - called superfights, but he did win in his category. The video above is not great, but Hamed is the dude that starts each time on the left. This is not the superfight, but an earlier sparring event that we did attend.

So, here I am, back to my normal and ready to take on whatever comes my way. With the guy I love at my side, and lots of help, we are able to live a pretty great life.

Until later,
Ann and Dennis

Thank You

2010-10-11T06:42:00.000-05:00

Thank you to all of you who commented on my last post. I have had such a difficult time coming back to here since those few negative comments from past posts. Your new comments have given me the chance to put those others behind me.

I am sensitive, I admit this. I take my critics words personally, and they hurt. I must get better at this, because I will always have those that dislike me for speaking my truth.

I will go on, but give me a few more days to let your kind words fill me up again.

Until later,
Ann and Dennis

Anger, Frustration and Reader's Judgements

2010-10-10T17:49:00.000-05:00

A while back I posted that I was so frustrated with Dennis that I slapped him on his back. I received lots of feedback and emails, most of them putting me in my place.

What a horrible carer I am....how awful Dennis must have felt....that I am a woman that should be taken away from Dennis.

This feedback hurt. I have tried to be honest and open about how we are dealing with this horrendous situation. I felt horrible after slapping him, and apologized over and over.

I am far from perfect. I have never pretended to be perfect. I get angry and act in ways that are, at times, horrible. Dennis gets angry at times and acts in ways that are horrible. He is also far from perfect.

I am not sure that I want to write any longer. I want to be honest, but I do not want my honesty to bite me back.

I will think about this for a while.

Until (maybe) later,
Ann and Dennis
Still loving each other the best that we can

Home Again

2010-10-04T07:17:00.000-05:00

Our latest trip is completed and we are home safe and sound, albeit quite tired and jet-lagged. The collage above is just a small taste of Wales, with one picture of central London as seen from Hamstead Heath, close to where Jane and Ralph live. Wales is a beautiful country full of castles, coast lands, hills, mountains and some of the nicest people on earth.

The trip was as much work as I anticipated, but it was worth the back aches and a few tiffs between Dennis and me. Ralph was great, once again, about pushing Dennis around whenever we were outside. He even pushed him for over an hour as we walked through Hamstead Heath, up and down hills, over muddy and rocky paths and all without a complaint.

But the food pump did not work. We carried 50 pounds of food across the great pond all for naught. We never were able to figure out why it wasn't working, but it would not take a charge. It must have shorted out, because it did not work once we returned home, either. I did try to feed him with gravity, but he became nauseous and wanted nothing to do with it. So we purchased Ensure and Complan and lots of deserts to fill him up. Some days he was able to eat quite a bit, but other days we simply depended on empty calories.

We are home now for two months, while I work and Dennis rests up.

Until jet lag subsides,
Ann and Dennis

A Simple Update

2010-09-16T11:39:00.000-05:00

Tomorrow evening we leave for London for two weeks. I look forward to visiting Jane and Ralph and hopefully relaxing more than on a usual vacation. We aren't taking Raquel on this trip, but Ralph and Jane are good about pitching in and helping.

Anyway, I just wanted to add a few updates on Dennis before we headed out.

He is almost at the point where he is unable to eat any real food anymore. Chewing is pretty much out of the question, and swallowing is becoming iffy. Thankfully the new nutrition he is taking through his feeding tube seems to be working better than the sticky-icky glue that he was taking in before.

He is stiffer than ever. It is getting more and more difficult to lift him without the aid of another person. He has been taking a new drug the past two weeks prescribed by his neurologist last month, but it isn't helping. Actually he decided today to stop taking the medication; we are hoping that the medicine is the cause for this increased stiffness.

His speech has deteriorated to almost nil. There are times some words are understandable, but sentences are out of the question. We communicate with me asking questions and him answering mostly with a yes or a no. At times I ask him the context of what he is trying to say, and I am able to piece together something. At other times we both just shake our heads and move on.

The Dynavox is helpful, but only if he is able to lift his hand to use it. Some times I lift his hand to the keyboard and then he is able to type out something. Thankfully he has put in many key phrases and sentences, and can often find one that more or less communicates his needs. Real conversation is now a thing of the past.

But, I must add, that we continue to love each other, continue to enjoy just sitting by each other and I continue to tease him as he continues to laugh.

Until after London,
Ann and Dennis

A Treasure

2010-09-12T07:56:00.000-05:00

Yesterday Dennis and I went to Lake Nokomis for the butterfly release event. The butterflies were all marked and will be tracked as the head down to Mexico for the winter. Smart creatures if you ask me.

We ran into Ann, a gal I taught with for several years. She is very new age (I wish I could find another word, because she is so much more than that) and made this beautiful metaphor about my retirement. She commented how I just went ahead, without fretting much, and then suddenly I was offered this perfect job. Ann likened it to having the next cobblestone laid down on it's own accord in front of my foot. Follow your heart and life will be good, is what she meant.

I have lived like that for years, but I always thought maybe I was being a bit too impulsive. I don't worry very much, but sometimes I think I should worry. But, to tell the truth, it's just not a large part of my nature.

It was nice to hear her sincere joy for me.

Then we all hugged and went on our merry way. Thanks, Ann. You are truly one of the treasures in my life.

Until later,
Ann and Dennis

Back to Normal - At Least My Normal

2010-09-08T10:04:00.000-05:00

Life feels much better today. Perhaps a lunch out with very old friends and laughter helped. Maybe it is because the sun is shining for the first time since we returned from our last vacation. Or it could just be that I hate living in negativity and have made a choice to see the better side of the situation. Most likely it is a combination of all three and many other unknown factors.

I have been sleeping better, too. I have started keeping a syringe filled with a combination of Carbidopa/Levidopa and a small dose of Clonazepam (the muscle relaxer) by my bedside. If Dennis wakes me up with his sleep dreams, I inject it into his G tube and he settles down rather quickly. I don't have to get up out of bed to mix it up and Dennis doesn't get too far into his wild dream before I can get the mixture into his system. We both end up with a better nights sleep.

It also helps that a few other caregivers in my position have let me know that I am not alone in my feelings. Thank you to all of you who have reminded me that I am human with frailties and flaws - and it is okay not to be perfect.

Until later,
Ann and Dennis

Tears

2010-09-06T17:45:00.000-05:00

I have been crying quite a lot lately. I thought this part of my life was, at the very least, temporarily over.

I had an appointment with my psychiatrist last week, and she recommended an anti-anxiety pill, but not only did it not work, but seemed to make things worse. Three hours after taking my first pill, I was sobbing out of control.

They last day of our Alaskan cruise, I cried at the airport. Last night I was out of control crying over life in general. Today, all I want to do is cry. I am tired of sucking it up and just as tired of water pouring out of my eyes.

I was hoping the end of work would bring about the end of tears. I am not a gal that gets teary eyed easily, but the last two years I have to really think about whether I should wear mascara on any given day.

I was also hoping that traveling would make it easier, but just the planning alone sets me back to a bloated teen waiting for her period to start and bring relief.

Tomorrow will be my first "Webster" retiree luncheon. All the living retirees from my favorite school get together the day after labor day and celebrate. Perhaps this will cheer me up. After that I will need to pack for our London visit - I always love seeing my sister and brother in law.

Dennis told me today that his belief and faith in God has increased since he became sick. For me, at least now, it is completely the opposite. I do not believe in the saying that God only gives you what you can handle. Today I think that God plays favorites, and that Dennis and I are not on the correct list.

And, like it or not, that is how I feel at this moment in time.

Until later,
Ann and Dennis

A Normal Couple

2010-09-04T20:54:00.000-05:00

I "threatened" to kill Dennis this morning. Of course I would never carry out such a threat (I am not into jail and punishment), but I was frustrated enough to consider the thought, at least.

He kept me up half the night. Then at 6 am, on a Saturday, he wanted me to get him up. He just would not shut up! He groaned and moaned and sighed and poked me until I finally got up to deal with him. At that point I mentioned that I had ways to end his life. I also slapped his back.

He was not happy. And as I walked around in a half awake state most of the morning, I was not happy either.

I am sharing this because I have received so much feedback about how strong I am, how I am to be admired, etc., etc., etc., lately. Yet I am just a simple woman living the life that has been dealt. I get angry. Dennis gets angry. We both get tired and sick of each others company.

And we will go on. We already have fixed this and are looking forward to tomorrow. Maybe it will bring another battle, maybe it will bring a day of dullness, or maybe one of laughter and love. Anyway it turns out, we will always love each other - even if that love looks so much different than it did just a few years ago.

Until later,
Ann and Dennis

Yet Another J/G tube Replacement.

2010-09-04T00:02:00.000-05:00

It was back to Methodist hospital yesterday for another J/G tube replacement. It started clogging a few days after we returned from our trip to Alaska. I suppose I should give a big thank you to the tube gods for making sure it happened when we were home.

I happened to have the nutritionists telephone number on my phone because we had talked just a day before this happened. She had suggested adding water to the feeding, but that didn't help. It still clogged up. So while I was on the phone talking to her, Raquel was on the phone setting up an appointment talking to the hospital. We managed to get him into the hospital for a tube change and get a new formula prescription all in one day. The food arrived just in time for his nightly feeding.

We are crossing our fingers. This food seems thinner and less sticky. Of course he needs to take more in because it has fewer calories in each can and we need to wait and see how he tolerates the new rate of intake.

I guess the last resort will be to have two separate tubes instead of the combined J/G tube. What possible difference could that make. He already has two tubes protruding from his belly (the J/G and the cath). It just gives the homeland security at the airport more to fuss about when they wand him anyway. I love to make their lives just a little bit more miserable anyway. They are way too arrogant for my taste - even though I am happy when they do a thorough job.

Until later,
Ann and Dennis

An Alaskan Cruise

2010-08-31T13:04:00.000-05:00

Sawyer Glacier Melt-Down

I have been on a few cruises before, but this cruise was by far the most scenic. We spent the better part of a day simply making our way toward the Sawyer Glacier at a snails pace.Here are a few pictures from our trip. I hope that you enjoy the views!

A Rescued Eagle in Skagway

Sawyer Glacier

My favorite Iceberg

Dennis and Ann on the White Pass Trail

A View from the White Pass Train

Dennis and Raquel on the Ship

A Perfect Sunset in Prince Rupert

The Spark

2010-08-19T17:10:00.000-05:00

I just had to write one more entry before we set out on our latest journey.

Today I took Dennis to two medical appointments. One was to have his catheter changed and the other was to his doctor that specializes in movement disorders. Both went fine, but the second visit is the one that prompts this entry.

Dennis always wants to know how long he has left to live, and he always asks the question. Of course there is no real definitive answer and we know that a bad fall or pneumonia may be the end of it all. We work hard to prevent either from happening and, at the same time, know that we cannot control everything.

The doctor's answer to Dennis question was, "You still have a spark in your eyes and that is encouraging."

I have said it before and I will most likely say it again, but love, laughter and an enjoyment of life must play a part in all of our lives. Perhaps this is even more important when a person is sick.

So as we are off on this Alaskan adventure, I will know that we are doing the absolute most that we can do for Dennis' longevity. It's what works for us.

I have no idea what puts the sparkle in your eyes, but I do hope that you know it and keep it awake and alive.

Until after vacation,
Ann and Dennis

PS - Look for updates on Facebook while we are gone. If you aren't my friend on FB, feel free to friend me. Otherwise you will just need to wait until we return home.

Blessing in Disguise

2010-08-17T10:32:00.000-05:00

Yes, the feeding tube did burst open, just like predicted.

The staff at the hospital where Dennis hangs out is so friendly. I called Sunday morning, and they fit us in right away. They did not make us go hang out in the ER for hours, but instead let us go directly up to the radiology department for the replacement tube. I don't like having Dennis sit in a room full of sick people sneezing and coughing and waiting and complaining. Who does?

We both decided this was a blessing in disguise. It was going to happen sooner or later anyway. Since we are leaving for our cruise on Saturday, it's good to have everything in good working order before we board the ship. No one would have been happy if we had to leave the ship to visit a hospital for a day. Now that is a worry that is off of our plate.

This will be my last entry until we return. Hopefully I will have some fun pictures to post of us at play in the wilds of Alaska.

See you in a couple of weeks!

Ann and Dennis

Laughter

2010-08-14T13:51:00.000-05:00

I am often asked, "How do you two do it?", by friends and sometimes strangers.

It's a difficult question to answer, because I am not often sure what the question means. I try to answer it meaningfully, but I doubt the answers really say much of the truth.

One thing I do know that keeps both of us going forward and living fully is laughter. One of my favorite sounds in the world is listening to Dennis giggle. Another of my favorite sounds is my own laugh, although I will admit that it sometimes is too loud for others. But both Dennis' giggle and my laugh are completely genuine.

Many mornings I hear Dennis and Raquel sharing laughs in the mornings when he is getting ready for the day. Sometimes I join in and other times I just listen and smile. Even as I right this, my face is grinning and I am feeling that warm fuzzy feeling all over.

Dennis can make me laugh so easily. He is an odd duck with a quirky sense of humor that I adore. The other day he and Raquel were cleaning out his closet and he found a set of goggles from his skiing days. He immediately put them on and kept them on for hours.

Now how can you not smile and laugh along with such a man as this?

Until later,
Ann and Dennis

J/G Tube

2010-08-13T11:16:00.001-05:00

I know that there are no sane people in this world that are begging for a feeding tube. Perhaps a kid or two who is thinking about all the extra play time and the ease of clean-up, but no reasonable person would want a tube of any type sticking out of their body.

Unless, of course, it is necessary.

When Dennis had just the gastric tube, he suffered from acid reflux. He was continuously spitting up and vomiting. He stomach is much more settled with the J/G tube, but it is constantly getting plugged. The food is thick and sticky. It actually looks quite a bit like Elmer's Glue. I am sure, in a pinch, it could be used for glue. In the past week it has been plugged twice and last night it even turned off the feeding pump.

Yes, this is another one of those waking up in the middle of the night stories.

In the middle of a school dream, where I was one of the most ineffective teachers ever, the alarm started to beep. This time I didn't mind being woken up. I really hate school dreams.

I got out of bed and looked at the message - "No Flow." Everything was hooked up properly, the food was going through both the bags tubing and into the jejunal tube, so the only reason I could surmise for the alarm was that Dennis was plugged up once again.

Hot water works most of the time on getting the tube unclogged, but I need to push and pull the water in and out until a break through occurs. It took a while, but I managed to push to clog into his intestine where it could be taken care of through whatever way the intestine takes care of such things.

It's wonderful that Dennis gets all of his nutrition without having to fight with food. Actually, he would waste away to nothing if he was depending on food for his caloric intake. But why can't they make the canned nutrition less sticky? Or thinner? Or make the tube wider to accommodate what is going through it? And why in the world is it vanilla flavored?

It's not a big deal bringing him in to the hospital to have it replaced, but it could happen while we are on a trip, and that would be a fairly big nuisance.

By the way, Dennis slept and snored through the entire episode last night.

Until later,
Ann and Dennis

PS: I was injecting water into the tube on Saturday night, two days after this post, when it burst wide open. Sunday morning back to the hospital. This time they put a slightly larger one in, so maybe this will help? Time will tell, I guess.

Retired and Working

2010-08-11T09:03:00.000-05:00

Yesterday I received a series of emails and phone calls regarding a part-time job. I really was not expecting to be recruited, but I wasn't taken completely by surprise.

I used to work under a federal grant umbrella within the Minneapolis district. Our over-all direction was to promote and provide training for safe schools. I worked with a small group that attempted to move schools towards a positive and preventative approach to working with behavior issues. Unfortunately, Minneapolis did not adopt the idea with any enthusiasm, and it faltered and petered out.

However, most of the state has embraced PBIS (Positive Behavioral Interventions and Supports) just like the majority of educators in the country. The metro group alone (areas surrounding Minneapolis and St Paul) has 49 new schools this year, and 30 last year. Not surprisingly, they need more staff to train and work with new school staff.

What does this have to do with Dennis' MSA?

Nothing, I suppose, but it will provide extra income that I could use now that I have retired to spend time with Dennis. This is a very part time job, with flexible hours and dates. There are only 3 times during the year that I must be in town at a meeting.

Most importantly, PBIS is something that I really believe in, understand and can support without any reservation. School staff that have signed up for the training are usually fun to work with and motivated to make positive change. Within a few months of the beginning steps of implementation, schools are able to see positive change.

And, as my last entry stated, Dennis will be happy to get me out of the house more often doing something that I enjoy.

Until later,
Ann and Dennis

Thank You For Taking Ann Out!

2010-08-10T06:06:00.000-05:00

A few days ago one of my girlfriends and I went out for a large part of the day. Dennis wasn't feeling well and neither was Raquel, but I really wanted to get together with Ann. So off we went.

Near Minneapolis is the 10th largest lake in Minnesota - Lake Minnetonka. We took a boat cruise around the lake, ate lunch at an Irish pub and walked around the touristy town looking at all the art shops. We topped it off with a glass of iced coffee and drove back into the city.

When Ann left, Dennis thanked her for taking me out of the house.

I have been hanging around the house too much lately, but I am enjoying being home. I do love to go out with my girlfriends, but I right now I seem to be home more often than out and about. I can sit on the deck, do my art, write, nap, read and just stare at the TV without any desire to leave.

I don't know if this is a phase or what. I don't even want to explain it to myself. I am just fine, right now, with being content at home.

Until later,
Ann and Dennis

Another Vacation

2010-08-04T12:30:00.000-05:00

I can't quite believe this, but we now have two vacations booked and ready to complete. Not only will we be cruising the Alaskan coast in late August, but we will also be visiting London in late September.

We have decided to travel, rest 3 weeks and travel again. I don't know how long our energy or bank accounts will hold out, but we will keep on until one or the other says stop already.

I have dreamed for years of retiring and traveling. Dennis and I had hoped at one time to buy a condo in Mexico and spend our winters there. While we are not interested in that anymore, we still want to be out and about with people in new and familiar places. I only wish airfare was at the price range it was when we first started out fulfilling our travel fantasies.

For those of you new to this blog, my sister and brother in law live in London. We used to be able to stay with them, but they have a typical 2 story English house. Dennis can no longer do steps under the best of circumstances, so we will need to stay in a motel. Finding an accessible hotel nearby was no easy feat, but thanks to my travel agent, we found one a few miles from Jane and Ralph.

Dennis is already dreaming up the next destination. Stay tuned, folks.

Until later,
Ann and Dennis

Moose

2010-07-30T10:36:00.000-05:00

We just returned from 3 nights on the North Shore of Lake Superior. We stayed in the small town of Grand Marias about 2 hours up the coastline. It was a beautiful drive. The town has suffered from our recession, and so many of the cute shops and restaurants were closed. One more sad reminder of how our economy has suffered.

One day we drove on the Gunflint Trail in hopes of sighting a moose. Dennis was in his babble, coughing and grunting mode for the entire two hour drive. Neither JoAnn or I could understand one word he was mumbling. Occasionally I would ask him what he was talking about, but it was not worth the effort to try and understand him. He was beyond participating in any real conversation.

I was driving very slow. One of the dirt roads we took had recently been graded. We felt like we were riding on top of a washboard. The second off road experience had not been graded, but instead was covered in rocks. There was no choice but to drive slow, enjoy the scenery and keep the eyes open for a moose.

We were just approaching a small body of water when Dennis said, "MOOSE!" Sure enough, there along the edge of the water was a large moose drinking water. The moose slowly took off when he heard the car and hid in the trees. We could see him hiding from us and we stayed for a while hoping he would return. The moose, however, took off for the woods after a few minutes and we drove on.

For the rest of the vacation we would tease Dennis with, "oooeeeeaaaa, uuuuaaaerrrrr, cough, cough, grunt, mmmmnnnnoooooouuuu, MOOSE!"

I am glad that he is such a good sport and laughed each and every day he teased.

Until later,
Ann and Dennis

A Mini-Vacation

2010-07-26T07:57:00.000-05:00

Dennis wanted to squeeze in another vacation before we left on our Alaskan cruise next month. So we are headed up to the North Shore of Minnesota for four days and three nights.

Our friend, JoAnne, is accompanying us on this trip. JoAnne is the gal that hosted my retirement party, worked with Dennis for a short period of time and has the garage that I am helping clean out. She also is the gal that helped so much with cleaning out mom and dad's place when we moved mom to Minneapolis last summer. She has been there for me so often that I don't want to begin counting how much I owe her. Thankfully, we both believe in the philosophy of "paying it forward."

So adios for a few days, and see you next weekend.

Until later,
Ann and Dennis

Hockey Pants

2010-07-25T13:53:00.001-05:00

I mentioned a while back how much weight I have gained over the past three years. The good news is that I have not gained a pound since retiring, and perhaps even lost a pound or two. I think getting away from the stress of work, and I know that not eating school lunches has made a bit of difference already.

What does it really matter anyway. Where ever we go, Dennis gets all of the attention. Rightfully so, I suppose.

Someone left a comment on a previous post asking about the hockey pants. They are actually one of the reasons that Dennis gets so much attention.

Whenever we walk, even if it is in the condo hallways, Dennis wears his helmet. If we walk outside, he also wears his hockey pants. They have great hip and rear end padding that protects him if he should fall. I know that you can buy padding that is made just for this purpose, but he had them around and they work. In fact, they probably work better because of the harder plastic padding. Sometimes he also wears his elbow and knee pads that are also left over from his hockey days. Believe me, no one is looking at me when we walk around the block.

There are many reasons Dennis garners all of the attention from others. Most of the time the attention is good. Some of the time, it is a bit harder to take. But even I will admit that I would stare at him long and hard I if saw him tottering down the road, a girl at his side holding him by his gait belt, dressed up in his gear. It is a sight to behold.

And yes, he often wears a matching jersey. Sigh....

Until later,
Ann and Dennis

New PCA

2010-07-24T09:27:00.000-05:00

We decided to hire someone to come in for Saturday mornings to help out with Dennis. Since I am now retired, in many ways these seems a bit indulgent.

There are, however, several reasons that make sense for having someone come in on one weekend morning.

Dennis' hours have been increased from 8 hours a day to 12 hours a day. In this economy, people need to earn any money they can. I felt it was more important to give someone else a few hours than get paid myself. We hired a 20-something gal named Natalie who works full time, but is getting married soon. Her boyfriend is working an extra job and she wanted to help contribute, too. If we can give her a few dollars a month to help her out, while we get our needs fulfilled, so much the better.

Now that the altruistic part of me has been stated, here are all the selfish reasons behind the new hire.

It is a very, very long time between Friday at 3PM and Monday at 8AM. I am completely locked in and must be with him and available for him for the entire time. When my old body has had enough, I tend to get crabby and smart mouthed with Dennis. This is not great for our relationship.

I hate morning duty with Dennis. There, I have said it and it's out there. With a Saturday gal here, I only have Sunday morning duties, and that I can handle with grace.

I want to keep our relationship less about care and more about loving. It's much easier to love Dennis when I haven't had to do all of the medical parts first.

How selfish do I sound?

Okay, there are those of you out there that will say I am simply taking care of myself, and that is okay. I know this. I also know that I am still his primary care-giver, being with him, alone, for at least 14 hours a day. I am the one whose sleep gets interrupted by his wild dreams and positioning needs. But it still feels a bit self-centered to me.

There goes my direct route to heaven down the toilet.

Or maybe not.

I am trying to do what is best for both of us. Dennis does need 1-1 care 24/7. I know that I cannot do this alone and maintain my own sanity. I also know that if I am not in great shape, I am no good to either one of us. This is important for both of us.

Am I trying to convince you, my readers, that I am doing the right thing or am I trying to convince myself? Hmmmmm.....food for thought.

Until later,
Ann and Dennis

A Little Nap

2010-07-22T15:52:00.000-05:00

The new bed and mattress arrived yesterday. The delivery men assembled the bed in only a few minutes and picked up every trace of a recent delivery. I looked forward to a great night sleep last night.

Naturally, a sound sleep was not about to happen.

I slept soundly for a few hours when Dennis began to sink into his pillow. (Yes, he still sleeps with me and will not go into the medical bed). From then on it was "Aaaaa" Aaaaa" for the rest of the night.

Today Raquel and Dennis were off to the urologist for a catheter change and a trip to the Courage Center for a workout. I knew that I had enough time to watch my afternoon show, The Closer, and then I would go to bed for a nap. But the phone rang and it was an important call, so the nap got set back about 40 minutes.

I had just laid down in bed when Dennis and Raquel returned. Thursdays she leaves early, so she set him up and took off. For about 20 minutes, Dennis was quiet. Then the "Aaaaa" routine started once more. I yelled out that I was sleeping, but he kept right on with the calling. So I got up to see what was up. It was meds time.

After I gave him the meds he asked if he could come to bed with me. What could I say? Saying no was not a good choice, that would cause an argument and wake me up completely. Instead I said yes, but only if he promised to be quiet.

First he grunted. Then he asked for covers. Then he asked to be turned. Then he wanted his drool rag. Then he grunted and groaned loudly. Finally I asked him if he called this quiet and when he answered yes, I knew I had to give up on a nap.

I came to the living room and decided I might as well write a blog entry. In the background Dennis is giving me not so subtle reminders that he is still in bed and wide awake.

Grunt. Groan. Sigh. Sigh. Grunt. Groan. Grunt.

At least I got something done on this not so quiet day. I should also be tired enough to sleep through almost anything tonight.

One More Large Delivery

2010-07-21T08:30:00.000-05:00

Today the new bed is arriving.

This is the bed that is replacing the bed that Raquel and I broke while it was in transit from one bedroom to the other. I am really looking forward to getting up off the floor and back into a bed that sits at a reasonable height.

In the meantime, the lift arrived and is sitting at the foot of the medical bed. Actually it's more of a looming over the bed - it's huge, awkward and ugly. It is not something that Martha Stewart would approve of in a bedroom design. Perhaps I should knit a cover for it?

I believe that we must have everything that a disabled person would want by now. We have all the smaller durable equipment - oxy-meter, blood pressure machine, a saliva suction machine, feeding pump, Dynavox - as well as the larger items - walker, manual and electric chair, lift chair, bed, lift, bed table - and all the repurposed items - helmet, gait belts, hockey pants and baby monitors.

I hope that after today we will not need any more deliveries to this address for quite a while. At least not for huge items that require us to get rid of something old to make room for the new.

Until later,
Ann and Dennis

Being Ann

2010-07-11T16:34:00.000-05:00

My parents both had complicated names. My mother's was Avyril Maxine Peterson, and my father's was Robert Steinsland Osterhus. Actually, my mother got the worst of the deals after she and dad got married. This is probably unnecessary to say, but that is how the three of us kids ended up with one syllable first names; Paul, Ann, Jane.

Like most names, people have taken advantage of even 'Ann' as a way to tease, delight or be a bit rude. I don't suppose any name is immune to being twisted and turned into something different.

But the only thing that ever bothered me was when someone was saying "and" and I would hear "Ann." Mostly this happened at school. The teacher would be lecturing and saying something dull and useless, and then he would say "and.........?". Hearing "Ann.....?", I would answer, "Yes?", and everyone would stare at me. Oops, caught day-dreaming again.

Sometimes my siblings would also take advantage of 'Ann' and 'and'. There was always a bit of delight when a Christmas gift tag said "Paul And Jane". Ha. Ha. Ha.

Now I am facing another way the name Ann is giving me something else to dismay me.

Dennis' grunts are becoming more and more easily mixed up with my name.

As Dennis' speech deteriorates, many words are becoming simply vowels. For a long while my name was "Annnnnnnnnnnnn...Annnnnnnnnnnnn...Annnnnnnnnn", but now it is simply "aaaaa..aaaaaaaaa..aaaaaaaaaa." This is not easily distinguished from "Ehhhhh...ehhhh...ehhh" or "Uuuuuuu...uuuu...uuuuu".

So I find myself getting up and checking on him even more often that he actually does call me. Last night I was up twice only to figure out that he was just grunting in his sleep. This afternoon, I checked on a grunt more often than I checked on his "Ann".

And that's what life is like being Ann.

Until later,
Ann and Dennis

Medical Bed

2010-07-07T09:07:00.000-05:00

Dennis' medical bed is coming tomorrow. Unfortunately, it will not fit into our existing bedroom. And Dennis does not want his bed in one room and my bed in another. This meant that we needed to switch up the two bedrooms in our condo. His office would become our bedroom, and our bedroom would become his office.

Raquel and I spent Monday moving furniture, electronics, books and all of Dennis' other collections out of his office and into the living room. Then we moved the bedroom furniture into the office. I should say we tried to move the bed frame, but it broke apart as we were moving it. It was from IKEA and had already been through one disassemble and reassemble, and it didn't feel like doing it again.

So I need a new bed, too.

And a new body.

We had to carry the frame down two floors to the garbage area. That took four trips of carrying pieces of pressed board and metal down the hall, to the elevator and then across the garage to the dumping area. We filled up the dumpster and started piling up the rest of the bed next to the dumpster.

Then the dresser decided it had been through enough, too, and fell apart. Again, we hauled and tossed furniture that was being very uncooperative.

Of course, no one could be without the Internet, so I hooked up the computer in the new office as Raquel hooked up the TV in the new bedroom. It was quitting time - I was on the verge of crying for the first time since I retired last month.

But I couldn't relax. There was stuff piled up all around me in the living room. The new bedroom had a mattress on the floor and felt ugly. It was too hot and humid to sit on the deck for very long. I needed my tranquility back again. It wasn't going to come Monday, or Tuesday either, I found out.

Monday night Dennis talked in his sleep all night. Tuesday he started to "boss" me around. I left the house for some shopping therapy before I took one of those cords from one of the electronic devices and wrapped it around his neck and tugged hard.

A couple of hours later I felt better, but there would be no more moving on Tuesday.

Today is Wednesday, and Raquel is finishing up the office. We are all rested and feel much better. Tomorrow the medical bed will arrive, and we will see what needs to happen next in the bedroom. That will not be until next week however. I have enough bruises for this week, thank you very much.

Until later,
Ann and Dennis

2010-07-04T16:34:00.000-05:00

Happy 4th of July!

We spent our weekend being incredibly lazy. Saturday we did nothing. Well, that's not 100% true. I did manage to grab some Q-tips and clean out the crud in the sliding glass dorrs to our deck. That took about 15 minutes, and then I was done. Dennis did less than that.

Today, we headed to a newly designed downtown destination in our local village. There were no shops we wanted to visit, movies we had to see, so we ended up having a drink and calamari at one of the restaurants and headed back home. That was how we celebrated the 4th this year.

Home Alone

2010-07-02T09:46:00.000-05:00

Dennis and I moved into our condo just over two years ago. During those two years, I have had very little time to enjoy being home just doing nothing. Nine and a half months of both years I have been working 9 or 10 hours a day, then coming home to take care of Dennis. Each summer we have left Minneapolis to travel. Last summer the balance of summer was taken up with visiting Mother, packing up her belongings, moving her to Minneapolis and selling her house.

I noticed this morning that I simply wanted to stay home today and enjoy being in my home.

Then Dennis asked me to go to a movie.

I told him that there wasn't a movie out there I was interested in one tiny bit. I was attempting to think up another excuse when he asked if it was okay if he and Raquel went to a movie after his workout.

YES!!!!!!!

The only thing that I could want today, other than staying home, is to be home alone.

Happy birthday Dennis (62 yesterday) and Raquel (25 today). What a great birthday present you have given to me for your birthdays.

Until later,
Ann and Dennis

G/J Tube Problems, Again

2010-07-01T09:21:00.000-05:00

Once again, the "J" portion of Dennis' tube is clogged. It is just too narrow for the thick, sticky food that we are suppose to use. This time, when I tried to unclog the tube, a balloon formed. It was fun to watch, but not as much fun to try and fix.

So, today we are back at the hospital once again. The staff will assess the problem and either put a new one, the same style, back in or give him a separate tube for the gastric another for the jujunal. I imagine that Dennis is hoping for the first because it is an easier change. I am hoping for the second, but this will mean one more hole in Dennis' abdomen. It will also be a bigger surgery, and more recovery time.

I guess all we can do is wait and see. Perhaps the nutritionist will be able to figure out another alternative.

Until later,
Ann and Dennis

Time on My Hands

2010-06-30T14:27:00.000-05:00

Dennis has another bladder infection. After two days of bed, antibiotics and lots of attention, he is finally feeling better. I worry whenever he gets sick.

But I had plenty of time on my hand and accomplished two big tasks.

I booked a late August cruise for the interior of Alaska. Dennis and I were in Alaska a few years back, and were in awe of the glaciers. The sounds they make when they melt and crash into the ocean is indescribable. We also enjoyed the laid back atmosphere. Now we are looking forward to seeing other parts we have not yet seen. Even better, Raquel will be joining us to help out with Dennis.

I also finished a painting. Raquel really seemed to like it, so I am giving it to her for her birthday. It was fun to give away something that I created and the recipient likes.

It's angels in the night. And while Raquel is not here during the nights, she is an angel in our eyes.

Until later,
Ann and Dennis

Courage Center

2010-06-29T09:23:00.000-05:00

Dennis works out at the Courage Center as often as possible. Some weeks this translates to one time, better weeks he manages to get in three workouts. Here is a picture of him at the gym.

And that is all for today.

Until later,
Ann and Dennis

A Vacation Story

2010-06-27T09:42:00.000-05:00

One of the more interesting days in Boston happened on the day that the four of us (Jane, Ralph, Dennis and I) decided to take a cruise down the river Charles. It's a great, informative, hour long trip that hits many of the highlights of what makes Boston so special.

We had decided, fairly early on in the day, to go to the to the top of the Pru (Prudential Building in Copley Square) to take in the view from the top. We were educated along the way about the stories of Boston from the beginnings until today. Most interesting fact learned? Much of Boston is built on Land Fill. That left me feeling a bit queasy about standing on the 50th floor of a building.

After the Pru, we began to make our way to the dock for our boat. We couldn't find a taxi that would take the four of us, plus a wheel chair, so Jane and Ralph took off in the first taxi that came along. Dennis and I were told to head to the Fairmont hotel, where taxis cued up on a regular basis. This was a short couple of blocks away, and even though we were a bit late, we charged over there with lots of hope of tagging a taxi. The first taxi in line was driven by one of the worst of the Boston lot of drivers.

As I asked him if he wanted a fare, the driver looked at Dennis with disdain. I should have turned to another driver, but I have been taught the rules of queuing taxis and knew that we were to take the first in line. He finally allowed me to work Dennis into the back seat, unpack the gear that we carry on the back of the chair, load the chair and the gear into the trunk, when he decided he would not take us. The chair wasn't a perfect fit.

I can swear like a sailor given the opportunity, and I am very defensive when it comes to Dennis. I told him he would take us, but I lost the battle. All of a sudden he did not know any English. So I asked him to help me and take the chair out of the trunk. He refused. I swore more at him, asked for his name and licence number, and swore a bit more. Then I moved to get Dennis out of the back seat and he started to fall. I yelled again for help, and finally the other driver came over and helped me get Dennis back into his chair.

In the meantime, Jane had been calling me on her cell telling me her driver was hopelessly lost. I had shown the driver the exact location on my Blackberry before they pulled out. When he got lost, Jane had used her IPhone to show him again. But he was still lost. It looked as though none of us would make it to the boat on time.

With the help of the Fairmont staff, we were able to snag a cab and finally met up with Jane and Ralph a few minutes after the boat pulled out. They were gracious and let us change our reservations to the next ride, which gave us an hour to settle down, chill out and enjoy the River Charles. This is a picture of my sister (on the left) and me overlooking the River Charles. Please note that I am smiling and no longer cussing like a madwoman being undone by a taxi driver.

Until later,
Ann and Dennis

Thick-It Tips

2010-06-26T14:28:00.000-05:00

When ever we go anywhere, we always take thickener along so Dennis is able to drink. Dennis loves, loves his Coke and will also order a beer with dinner. Usually I ask the wait staff to fill the glass only 3/4 full, but that ends up in a confused look and always an explanation. So, if it is a beer, I will usually just drink the top off the beer. For Coke, I always go through the explanation; I dislike Coke as much as Dennis' loves it.

While we were on the cape, I trained Ralph to drink the first third of the beer. By the time we met up with Hamed and Ashley, Ralph was completely in the habit of helping out and did it automatically. While Ralph was drinking, and I was adding thickener, Jane was explaining to Hamed about why Ralph was drinking it and my assertion that every beverage reacted differently to the thickener.

Hamed then proposed a research study - Dennis and I could travel around the world testing different beers and how they responded to the thickener. While every beverage acts different to the thickener, every beer (in my humble experience) also reacts differently. So why not research the project, and save other thickener folks the messy problem of cleaning up a goopy, slippery and sloppy mess?

Sounded good until we figured the market for this research was probably low, and I really don't want to work for the government again, in any capacity - way too much paperwork. But, I could share my experiences with you.

Then I figured I could pass on other coping tools that we have discovered, used, and what value we found in any of these tools.

So, Number One Tip - Using thickener in beverages

No ice. None. Nada. Not one bit. As it melts, the thickener
Orange juice needs very little thickener - it keeps getting thicker and thicker
Use a whisk to mix - it goes much faster and the consistency is more even
With fizzy beverages, start with a glass half full and add thickener. Then add more pop with the head goes back down. Add more thickener if necessary and never fill the glass full until you are done adding the thickener.
Use half flat fizzy drinks if possible to start the process. Finish off the drink with a freshly opened drink.
Wines thicken nicely and there is no overflow problem.
Treat beer as you would pop - but remember, all beers are different. Go slow when adding mix.
If your doctor tells you to use thickener, do it. It may just save your life.
There are many on-line dealers for Thick-It and if you purchase in bulk, it's not all that expensive.
Carry a small container of thickener where ever you go.

Do you have any suggestions? Do you have questions that we may have an idea about? Please feel free to email me or drop a comment. I am ready and willing to share or ask around.

Until later,
Ann and Dennis

Transfer a Patient from Bed to Wheelchair Using a Hoyer Lift

2010-06-26T07:50:00.000-05:00

The Lift

2010-06-26T07:30:00.002-05:00

The last time a social worker came to assess Dennis, she decided we needed a lift to help move Dennis from one place to another. Yesterday a representative came out to show us how it works, before he started the insurance paper work process.

"I hate it, I hate it, I hate it," Dennis yelled throughout his visit.

The man understood. He told me he generally gets that reaction from customers.

I ordered it, anyway, much to Dennis' chagrin. "It's for me, not for you," I told Dennis. I explained it was for my back, the PCA's backs and to help prevent any further bruising of my body.

"It's out of the dark ages! It's barbaric. I hate it, I hate it, I hate it."

I do too. It's huge, it's a lot of work, it's ugly and it takes up too much room. However, I know even if we do not need it right now, we will need it soon. And since the wheels of government dollars runs so slowly, we should take it when it is offered, or we may not have it when we really do need it everyday.

If the days do not come when we need the lift, it will most likely mean Dennis isn't around anymore. I know enough about this disease to be assured that this will be the case. I don't mean to be maudlin or even discouraging, but it is a fact that Dennis isn't going to become easier to move and position as his disease progresses.

So, in a way, we are stepping back to the dark ages. We are dependent on what is available, and the lift is not the most innovative pieces of equipment I have seen. It's not computerized, it's not even operated by batteries. Some days we simply need to be grateful for what is at hand, even if it isn't up to our normal standards.

Until late,
Ann and Dennis

(View the video above if you want to see what this looks like and how it works.)

Vacation

2010-06-25T12:42:00.001-05:00

We are back home from our Massachusetts vacation. We had a few bumps along the way - airline related, mostly - but all-in-all, it was a successful vacation.

We met up with my sister, Jane and my brother-in-law, Ralph in Boston. Ralph was such a sweetie and did most of the pushing while we were in Boston.

Dennis carries a helmet everywhere he goes for when he walks, which he does try to do occasionally. You can see it hanging on the back of his wheel chair.

It was great to spend time with my sister, since she lives in London and we do not see her often enough. Jane and Dennis get on quite nicely, and he misses her as much as I do.

After Boston, we went to Cape Cod for four days and met up with Dennis' sister, Donna and brother-in-law, Louie. We haven't seen them for two years, and as much as I had tried to warn them about Dennis condition, they were still a bit overwhelmed, but happy to see us, too.

More later. I think I can find a few more pictures to share.

Until later,
Ann and Dennis

Weary on Sunday

2010-06-14T16:31:00.000-05:00

This morning Dennis went to the hospital once again, to have his J/G tube replaced. Although all went well, it's difficult to not feel defeated some days.

Yesterday....

Dennis couldn't eat. Dennis couldn't move. I was snappy with him. Jane and Ralph came over to drop off a pie for Dennis (you have NO idea how much this man likes his pie), and Dennis was on the toilet. An hour passed and they left. He could not eat the pie. Not one teeny tiny bite.

He couldn't move well all day, Sunday. No matter how many meds we poured into him, he was stiff and immobile. He finally went to bed at 6PM. He was groaning and moaning, as is often normal, when I heard a big THUNK. He had fallen out of bed, face first.

No harm had been done, once again, but two falls in one week is a huge set-back. This can't be happening, once again.

But tomorrow we are off for a weeks vacation - Boston and Cape Cod, with family. Hopefully vacation will pick both of us up once again.

So, until much later,
Ann and Dennis

A Messy Night

2010-06-13T08:28:00.000-05:00

Okay, the leak was not only on the gastric side of the tube. This morning we woke up to liquid feed on the floor. The stuff is thick, sticky and vanilla flavored. I hate artificially flavored anything, and when mixed with the smell of carpet, it is even worse.

As if that wasn't bad enough, Urina, the night urine collector, came loose and leaked all night. Close your eyes and imagine what the smell of urine mixed with artificial vanilla might smell like and feel like.

YUCK!

I am going to quit now, for I have a mess to clean up.

Until tomorrow,
Ann and Dennis

A Leak Springs Eternal

2010-06-12T10:23:00.000-05:00

Dennis' J/G tube sprung a leak this morning while I was giving him his medications. I called the hospital and we have an appointment for 7AM on Monday. In the meantime, perhaps Duct Tape??

For those of you (most of you, I hope) that do not know what a J/G tube is, here is my best lay mans definition. It is a tube, about a 1/4 inch in circumference, that is divided in half. One half of the tube goes into his intestine, for night time feeding, and the other half into his stomach for medications. I think I may have been pushing to hard when trying to give him his meds, and the G side of the tube started spraying all over the place. A small hole had opened up in the G side.

G stands for gastro (stomach) and J stands for Jejunal, which must mean intestine. There is one more thingee hanging out, which is the control to the balloon that hold it in place.

I have tried to find a website that explains it better, but they are all too technical for me. Here is a picture of Dennis' tube contraption. Where Dennis' pointer finger site, is exactly where the leak began.

Now we have a 7AM appointment at the hospital on Monday to get it replaced. Sigh. At least it is an easy surgery and we should be home by the time my 10AM dentist appointment comes around.

Until later,
Ann and Dennis

Pre-Travel

2010-06-11T14:07:00.000-05:00

Today is a day of packing for our vacation. We leave on Tuesday for Boston and Cape Cod. Normally, we would pack a day ahead of time, but with all of Dennis equipment, we need extra time to plan for space in the suitcases.

We did find a collapsible IV pole that will hold the pump for Dennis feeding. It's made by Sharps and collapses down to 2 1/2 feet. It's made of aluminium, which makes it not only very light weight, but also is completely recyclable when we are done using it. If any of you are needing a pole, and want to be able to carry it around, I highly recommend this pole. Wait - perhaps I should see how the airline handles it first. I will get back to you all soon.

In the meantime, I have started a new painting (an oil) and the base coat is now drying. It should be ready for details by the time I come home. I also am planning on writing a second edition to my workbook (see link to Lulu below). The old one is on sale right now until June 30th, but there are a few errors in it. Unfortunately, I am not able to revise it, but it's a good buy if anyone is in the market.

Finally, just as an FYI - I am LOVING retirement. Yes, it's just a summer vacation now, but it's amazing how much quicker it was to get into the relaxation mode, once I knew that I would not need to work full-time in a school setting again. All my summers, over the last 3 or 4 years, have been a practice for retirement. Now that it is real, I know that it was the perfect time, and the right decision.

Until later,
Ann and Dennis

Chocolate

2010-06-10T09:12:00.003-05:00

Dennis has begun throwing up again at night. We are trying to decide if we should move his Nexium dose to later in the day, or keep him from eating for at least an hour before he goes to bed. The latter would be more difficult because there are days he is in bed by 4PM. Today he has a visit with his doctor, so we will have an opportunity to discuss some options. We also know that in the long run, we are the ones who really know Dennis best.

I bring this up because last night he asked me to come to bed to be with him at 6PM. I wasn't ready, and told him I would come at 7 if we could watch something we agreed upon. Then Dennis noticed that hockey was on, and I begged off and plopped myself in front of our other television. Naturally, every few minutes he was calling for me, because he had thrown up, again, and wanted me to clean up his mess.

One time, as I was cleaning up the latest smelly vomit, he asked me for chocolate. Now chocolate is not his friend on so many levels; chocolate makes him drool more, vomit more and he manages to get it all over his face, the sheets and the pillows. Eating it at night makes no sense, what-so-ever.

So what was my response? First laughter, then a solid "NO", and finally the statement, "you can have your chocolate for breakfast!"

Always, growing up, I wanted chocolate in the morning. Mother always said "no, you can have chocolate on Friday evenings only.

Is there some irony in this situation?

Until later,
Ann and Dennis

Brain Lesions

2010-06-09T11:47:00.000-05:00

Dennis is convinced that he has brain lesions. He believes they are causing his repetitive words and perhaps some of his memory lapses. Don't get me wrong, he is a sharp as any regular 60+ dude with tendencies to forget the mundane. But he does have more issues with stopping his chatter, and repeats phrases until a person wants to put a hand over his mouth. And, yes, I have done that and will most likely continue to do this.

I have looked up brain lesions, and they seem harmless, for the most part. There isn't much information about Multiple System Atrophy and brain lesions, which is far from surprising. In fact, there just isn't enough accurate information about neurological orders in general. So those of us with brain disorders, and their loved ones, hunt and peck and ask around and look for anything that can be found that explain the unexplainable.

So I am asking you, out there, what you know about lesions of the brain and any experiences any of you may have with them.

Until later,
Ann and Dennis

Past Falls

2010-06-08T14:19:00.002-05:00

Since I wrote yesterday about Dennis' latest fall, I thought perhaps I would share stories about some of his falls over the past few years.

One of the first I remember was about three years ago. I came home from work and found him laying in a pool of Coke and blood on the kitchen floor. He had slipped off of the little stool in the kitchen where he was enjoying his newspaper. Once the cuts were cleaned and bandaged, and the bloody coke mess scrubbed away, we relaxed a little bit. However, we were both fairly shaken up.

Lesson learned? Do not lean down to retrieve the sports page from the floor if you are a forward tipper. I suppose if you are a backward tipper, or a sideways tipper, there would be certain positions to avoid, also.

One of the funniest (only in retrospect) was when Dennis decided to help out in the garden when I was gone for a short weekend.

I should let you know that all of these falls occurred before we knew that he had a more serious disease than Parkinson's Disease. It was also the beginning of a 3 year decline in Dennis' MSA. We were just beginning to question his diagnosis in the simplest of ways.

Anyway, there I was spending my once a summer weekend with a girlfriend at her lake home. When I came home, I found the scratched and bruised face of Dennis. "Damn!"screamed in my brain as he told me the story.

It had been a hot weekend, and Dennis decided that he would hook up the hose to the elaborate watering system that I had created over the past few summers. I loved creating that garden, and Dennis was proud of my creation and newly discovered enthusiasm for outdoor gardening.

Again, he had leaned over to the ground for the hook up and fell smack dab in the middle of my rose bush garden! While getting himself up, he fell again onto some of the pavers that formed the walkway through the garden. At the time he was still able to pick himself up, but as the second fall shows, it was becoming more and more difficult.

As his face healed and we found our ability to laugh at his thorn torn face, we knew that we needed to find someone to stay with him when I was away. Another lesson learned the hard way.

As the falls increased, more lessons were learned. His falls three years ago led the the occasional use of a cane. He used them more as a toy most of the time, something to collect, but he needed them more than either of us were ready to admit.

The next series of falls led to his using a walker most of the time.

Then two years ago, before I started this Blog, his fall led him to the hospital and a short-term nursing home stay, the permanent use of a wheel chair and the discovery of his diagnosis of Shy-Drager. (Later to be re-diagnosed three more times before the MSA label was accepted by all doctors and the two of us)

Lesson learned? Live today.

I took him to Paris two weeks later. And that is where this blog began, almost 2 years ago.

Until later,
Ann and Dennis

Here is a link to my first post. For those of you that are in earlier stages of MSA/SDS or any other movement disorder, some of the earlier posts might be of interest.
http://multiplesystematrophyandshy-drager.blogspot.com/2008/07/is-it-parkinsons-or-msa-or-sds.html

A Fall

2010-06-07T18:23:00.002-05:00

Sunday, Dennis begged me to get him out of the house. I really wanted to stay home, relish in my new retired life, and just stare at the plants in the south and west corner of our condo, with the ceiling to floor windows. . But I gave in, as I usually do.

The plan was to drive to Lake Calhoun, one of the 10,000 lakes in our state, and sit on a bench and play the game of Guess. Guess is a fun game that most peepers and eaves droppers do on a daily basis - who is that stranger passing by and what are they talking about and then make up stories.

Then I remembered that my favorite boutique was having a side-walk sale. I mean really, who can pass up 75% off at their favorite store?

That's when Dennis fell. He had wanted to walk a bit, and was looking for dresses for me. He always has liked to pick out clothes for me. But he was standing still, and that is when he is most vulnerable to a fall. His back was to me and mine to his, and he just fell.

Since we were on grass, and my body broke the fall, no permanent harm was done. With the help of a passer-by, we were able to get him back in his chair, with only a few small errors, in short order. But he was shook up and so was I.

Dennis hasn't had a damaging fall in a very long time. He takes many precautions to avoid falls. When he does any walking outside the house he generally wears a helmet. Sometimes he also wears plastic padded hockey pants and hockey elbow pads. He has never had a fall when he gears up and even though the helmet was in the car, we didn't think of putting it on his head.

We did not make it to the lake. We both wanted to go home where it was safe. But, really, we should have just put the helmet on, and he never would have had that fall. I know, woulda, coulda, shoulda, but it was a lesson learned.

From now on, the helmet is a permanent fixture on his big old head. An ounce of prevention is still worth a pound of cure.

Until later,
Ann and Dennis

The Past Week

2010-06-06T14:17:00.001-05:00

Oh, my dears, what a whirl-wind week I have just been through. Our anniversary weekend, the last days of work, Jane and Ralph in from London for a few weeks, my retirement party and the beginning of the next chapter of our lives.

During the practice vacation we found out that we will need to bring along the pump for Dennis' night feedings. We tried hanging it from a light, which was fine, but not high enough to force the liquid down. And the "j" tube is 1/2 the size of the "g" tube, making it all the more difficult for gravity to do it's work. The liquid food is fairly thick and it was not moving any where. I am glad that we tried it before we headed out for more than one night.

Work was not fun at all. The boss was gone for most of the week, which made me the boss. Long, long ago, when I was a young, thin and energetic teacher, I had been encouraged by many to go into administration. But, I have the temperament of my father (impatient, demanding, always right, and stubborn) and my mother (sensitive, especially when stressed, and personalizing other peoples negative ways) and I knew I would not be suited for the work. But here I was, on my last few days of work, being in charge. Which mostly means, putting up with all of the parents and grandparents of the stinkers at school. And let me tell you, those stinkers do not come out of the wombs of sane women or the sperm of pleasant and intelligent men. By Thursday I was done, and took the last two days off from work as sick days.

The retirement party was a blast. I have had several jobs, at several locations over my 22 years in education. I did not invite anyone in particular, but put it out in the district hotline that a party was to happen. A diverse group of friends showed up, and I laughed a months worth of laughs in 6 hours. There were stories shared about me that I remembered, some that I sure were made up and some that were vaguely familiar, but I am sure they were only partially true. Dennis came with me, and tried to stay until he got food stuck in his mouth and wanted to make a get away. Raquel was his, and my, designated driver, and while he left a bit earlier than I did, he had fun.

I haven't hung out much with Jane and Ralph yet, but they came to the party, too. The four of us are going to Boston in a week together. We will stay in Boston for a few days and then head to Cape Cod. There we will meet up with Donna and Louie, Dennis' sister and brother in law, for the weekend. After the weekend, Hamed and Ashley will join us for a couple of days before we head home. I guess this vacation will be the beginning of the next chapter.

So stay tuned and carry on.

Until later,
Ann and Dennis

A Practice Vacation

2010-05-30T08:09:00.001-05:00

Today Dennis and I are filling another wish on Dennis' Bucket List. We are staying at the Nicollet Island Inn for the night. This is a historic building in Minneapolis, known for it's romantic get-aways. While we have eaten at the restaurant a few times, we have never checked in for the night.

It is also a test run for how to feed Dennis while on longer vacations.

With his new "J" tube, he must use a pump for his night feedings. We are really hoping that we can leave that at home when we travel. So tonight we will jerry-rig a pole to hang a bag from, and use the drip bags for feeding. The fear is we will not be able to set it at a slow enough pace for his intestines to take in the food and begin the digestion process before the emptying into the stomach. However, if it works, it will save us 20 pounds on luggage when we travel by plane.

We do have a letter from Delta (not our preferred airline, but the one we are stuck with in Minneapolis) saying we can check a bag for medical equipment at no charge. But this isn't really the problem - the issue is me loading and unloading a bag filled with heavy, but necessary equipment.

Here is an idea of what we take along:

Two diapers for each day. Not much weight, but lots of bulk.
Bed pads - same thing.
Pills (he is up to 25 assorted pills a day) and plastic tubes to inject the pills into his "G" tube.
A coffee grinder to pulverize the pills so they don't clog the tube
His computer for communication - while small in size, it weighs about 20 pounds.
His helmet and pads for walking. Lots of bulk, and the weight adds up.
His nebulizer - another 10 pounds. Perhaps we can get a script for individual neb treatments, but then we trade in bulk for weight.
Cans of food - he is taking in 3 cans of food each day and each can weighs about 2 pounds. This adds up on any vacation over 3 days.

So tonight is a practice night for saving 20 more pounds by not bring the feeding pump. Lordy, I hope it works.

Until later,
Ann and Dennis

Rabbit and Turtle

2010-05-25T13:21:00.000-05:00

The newest edition to the house - the electric wheel chair - seems to be working out, for the most part. Dennis has a bit more freedom, a bit more ability to move from one spot to another without assistance from anyone else.

However,

The other day, he almost killed both of us by moving our solid wood dining table across the room. He had the speed set on rabbit instead of turtle, and couldn't move his hand off of the joy stick. I had my back to the whole thing, and heard the table moving behind me. I turned and yelled, "STOP, DENNIS." I have a very loud yell, and it was able to shock him into stopping. I am sure the neighbors were wondering, but who cares anymore.

New rule of the house: NO RABBIT!!

Of course, as I sit here and write this, he just slammed into me one more time, moving my chair a few feet across the room. He was on rabbit again.

How do you slow a boy down when he wants to get away?

Until later,
Ann and Dennis

A Mantra for Ann

2010-05-23T08:42:00.000-05:00

I need a mantra.

For too long I have depended on the Serenity Prayer to get me through tough situations. Oh, it works, and it has served me well since I was a child and first saw this prayer on my grandmother's wall. But I need more. I no longer want to accept what I can not change. Nor do I always want to try and figure out what I can change and what I cannot.

So I am searching. I found a (dead) dude named Og Mandino, and American author who not only wrote books, but is somewhat revered for his famous quotations. I shall try on a new one each day and see how it fits. Or, perhaps better yet, I will find a few that I can say together that will work for me. Anyway, the one I choose for today is:

"No longer shall my vocabulary include such words as cannot, unable, impossible or quit."

I can, am able and it is possible for me to care for Dennis in a loving and nurturing manner. I will not quit, even when I want to run and hide from reality. I shall move forward with grace and love.

Until tomorrow,
Ann and Dennis

New "Stuff"

2010-05-22T09:06:00.000-05:00

After 2 months, the electric wheel chair has arrived. There have been a few stubbed toes and the machine cornered me in the doorway once, but there have been no broken windows or dented furniture so far. The house is quite filled up with movers and shakers - a manual chair, a walker and now an electrical chair.

A tall toilet also was ordered and installed after 3 months of waiting. Unfortunately, I found out this morning, after emptying Urina (night bag) that it wasn't sealed properly. It's so much fun to wake up in the morning and find yourself standing in a pool of urine. Wakes a girl up.

The feeding tube is working well, and Dennis has only thrown up two days out of ten. Yesterday he threw up quite often, but by the end of the day the acid reflux had ended. Last night, however, Dennis managed to unhook the feeder, and there is another mess for Ann to clean up today. It's probably too late to do much of a clean up - the food is very thick and sticky and dries quickly. Doesn't matter too much, the whole carpet needs replacing anyway.

A medical bed is supposedly coming in a week or two, and I have no idea what to do with it. Our bedroom barely fits our bed, and Dennis' office is filled with the remains of what Dennis is hoarding and hanging on to for dear life. We will need to deal with this issue this weekend.

It's a stormy weekend, and a good weekend to stay home and pout. Looks like I have just about enough stuff to fuss about to pass the rainy day away.

Until Later,
Ann and Dennis

The Coat

2010-05-21T08:48:00.001-05:00

Dennis and I celebrated our 9th anniversary recently. For the past nine years we have been downsizing almost daily. We moved two households into one smaller house and have tossed, given away, sold and bartered belongings through three moves into new homes. It's been easier for me - I have always been a thrower. But Dennis is a collector, and he does not like to give up his things. One of his favorite items to acquire is coats. However our new condo has limited storage space, and we have had to come up with a household rule - one new purchase means two items of the same type must be given away.

On Saturdays, our part time PCA, Susannah comes and gets Dennis ready for the day. She has a two year old daughter and a boyfriend, David, in her life. Both she and David are immigrants from Northern Africa, and are living on the financial edge. One Saturday, when we were giving Susannah a ride home, Dennis gave David two of his coats. One was a rain type jacket and the other a very warm shearling coat.

Last Saturday it was warm - 80 degrees and not a cloud in the sky. We gave Susannah a ride home, and when we were a few blocks away, Susannah called David, who was babysitting, and told he told her that he wanted to see Dennis. Dennis had been sick most of the week, and David was concerned and wanted to see him. As we drove up, David came out of the apartment building wearing the shearling coat and grinning from ear to ear. Susannah told us that he loves that coat.

We teased him a bit about wearing a winter coat in such warm weather, and he simply said that he wears it all of the time. He thanked us profusely for the coat, once again, and for bringing Susannah home. He hugged Dennis through the window asking how he was feeling and blessing us over and over.

It's not everyday that a simple action can bring so many warm feelings. It is easy for us, who have so much, to give away our stuff. Seeing someone so happy with what we have discarded makes the giver feel as great as the receiving. I am grateful for such small pleasures.

Until later,
Ann and Dennis

Better Attitudes

2010-05-14T09:39:00.000-05:00

Okay, I am better. Dennis is better, too. The sun is shining and the birds are singing. It's time to get back to seeing the lighter side of life.

I have had a few worried emails, phone calls and messages on Face Book, lately. All I can say is you should see some of the drafts that I did not finish.

We really are better today. Last night we both slept most of the night, and the alarm for the feeding didn't go off until 5:30 this morning. I can live with that.

Dennis is going to the Courage Center with Raquel today, and then I will take the car and get out of the house myself. Life has made it's inevitable turn and we have both decided to live on. And that is good.

Until later,
Ann and Dennis

Stressed Out

2010-05-12T10:23:00.001-05:00

I have been bookmarking last minute disabled vacations. I figure, if we have a couple of weeks, we will have several choices to pick from, for last minute travel.

But then right smack dab in the middle of planning for the future, the present happens.

I have been crying, Dennis has been worried. Dennis has to poop, the PCA isn't showing up for work. I do not feel well (haven't for a long time) because I am exhausted and really, really need some time off. I have a month until work is finished (and I do know that is nothing), but I am exhausted and ready to stop everything right now.

Dennis is waking up at least 5 times a night, and now the feeding pump buzzes 2 or 3 times a night. I should be able to get that down to one time, but for now, I am lacking sleep, patience and desire to do anything.

So I am taking the week off from work. 30 days until I am done, and I am taking a week off? It's not only best for me, but also best for the kids. Not only am I not at my best, but I am so on edge that I catch myself saying and doing things that are not like Ms. Ann! At home, we are used to Ann being stressed, but at work, not so much.

So for this week it is napping, television shows to dull my senses, and a bit of peace.

Until later,
Ann and Dennis

MSA on You Tube!

2010-05-11T10:44:00.001-05:00

I never would have guessed there would be even one You Tube video on MSA, let alone several. The one I posted below sounds so much like the two of us, I wanted to share it.

Until later,
Ann and Dennis

Caregivers - Multiple Systems Atrophy, part 1

2010-05-09T09:48:00.000-05:00

Out Patient Surgery

2010-05-08T09:34:00.001-05:00

From the immediate looks of it, Dennis' calorie issue may have been solved.

He had a new feeding tube inserted today. Yesterday he had an appointment with a GI specialist. This doctor decided that Dennis had the wrong type of feeding tube. Instead of one that feed directly into the stomach, he needed one that fed into the intestine. He was brought up to out-patient surgery and they inserted Novocaine into his belly. Then they asked when he ate last.

When I came home he told me they had been mean to him. They made him get shots into his delicate skin and then decided his stomach was too full to do the surgery.

So today he went back on a very empty stomach. When we left a couple of hours later, he had the newest tube on the market hanging out of his belly.

The gadget feels almost like silicone. It's tough, but soft. It has three separate places to insert junk. The "J" tube goes into the intestine. This is where food, and only food, gets injected. Then there is a "G" tube, where water, pills, and any other odd stuff get shoved directly into the stomach. Finally there is a balloon, which we were told not to touch under any circumstances. It's all a bit overwhelming, but we all will get it straight in a few days, and it will seem as if we have been doing this forever.

Dennis will now eat at night while he sleeps. This will leave him with several extra hours in the morning that he has used up slowly eating as much as he could for as long as he could. He will need to get a new hobby. Well, actually he has - he spent a small fortune the other day on a Nintendo DS. Now he can sit at the kitchen table for hours playing memory games and killing monsters.

Until later,
Ann and Dennis

There is a Season

2010-05-05T09:18:00.000-05:00

"To everything, turn, turn, turn..."

I could credit this to the Bible, but I learned this message best from the Byrds. If you don't know what I mean, I couldn't possibly explain myself. Suffice it to say, it was a beautiful song that has stayed with me since I was a teen.

Today, while I was actually enjoying myself at work doing lunch duty, I received a telephone call. I was thinking it might be a parent whose kid was in a bit of trouble, but it was a call from Jones Harrison's executive officer. He called to tell me the Minnesota Office of Elderly Something-or-Other had released the information regarding my Mother's death. He wanted to warn me that a TV station and the local newspaper were going to write articles regarding my Mother's death.

In two days it will be the first anniversary of my Father's death - and the fallout of moving my Mother, selling the house, and her death to all follow in the next six months. I was not ready for this smack in the face.

I immediately went to my boss who stopped everything she was doing to find me the telephone numbers I needed, hook me up with the right people that new how to move and shake, and give me the hug and the afternoon off that I needed. I wanted to stay at work, but she was right - I needed to make some calls and lower my blood pressure.

From work, I first called the TV station that was going to run a story. I got a tad bit of run around, but for the most part they were sympathetic. I asked that they not run the story, and I even pulled the "poor family still in so much mourning" card, but they were not very sympathetic. The story ran, without Mother's name, and without much fanfare. I did not watch it, but Dennis did. He said they mentioned that I had said that she was happy while she lived there.

When I arrived home, the telephone was ringing and it was the Star Tribune, the Minneapolis paper. By this time I was calmer, and asked them to include that we held no animosity towards the facility. The ending article also included that I stated that the staff at the facility was as distraught as the family over the loss.

Today is a new day, and hopefully the beginning of a new season of letting go and mourning without drama.

Until later,
Ann and Dennis