Sugar in the Morning, Sugar in the Evening

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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 flame…
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 it’s cosmic touch,
for it is veiled with trapped agate rays of sorrow
So if I chose to drop my heart down in the gutter…
the cause will be a certain sadness set never to repair nor reveal
Or blow on the dandelion…
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 tomorrow….
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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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)

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

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

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?

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

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

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

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

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

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

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

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

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

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

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.

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

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