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