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