Aunt Sharon update 10/2/09

First is from my mother:

Yesterday, of course, was Sharon's birthday. I read her cards from mama and me. I did not get much of a response. John got her up and put her in the lounge chair that she likes so much (you know the one, Michelle) and played a concert on TV that she enjoys. I also sang her some hymns, which I think she enjoyed. I asked her if she wanted me to continue singing, and she nodded her head. I'm not sure if she will know me today. She responded to us very little yesterday, although we did a couple of times get a big smile from her. Her friend Kelly had called and asked if she would like to see her pastor (a very nice Presbyterian lady) and I did ask her and she said yes. When I told her they were coming, she looked extremely happy, but when they got here, she kind of withdrew into herself. We had a scripture reading from Psalms and Pastor Barbara prayed a very lovely prayer. We then sat around and told about all our wonderful and cherished memories of Sharon and what our favorite thing about Sharon was. I said that I have always admired her tender and compassionate heart. I also told them about when we were little and Sharon threw mudpies in my face and Sharon giggled.

Last night, for the first time, she did not get a good night's sleep. She jerked and flailed around a lot, which is part of this process. The disease speeds up as it goes along. John has asked my opinion every step of the way about her care, and we both agree that within a couple of days, we may have the need to put her on some type of an IV pump.

As for me, I have an inner peace and strength right now which comes from above. I can feel everyone's prayers. Of course, there are tears, but I am so very glad that I have come to be with her during her last days.

UNCLE BUDDY...

I did go out and get some roses made into a lovely fall arrangement, and they are very cheerful in her room. Thanks again.

Marilyn




From Uncle John:

Sharon has dropped dramatically. This disease is exponential. Sharon is refusing food and water a good bit, and we expect she will refuse it all in a day or 2. Her neurologist made a house call because he has only seen this disease once, and he said she is in the final stages and estimated 4 weeks.

Me and Sharon's sister, Kelly and Kelly's pastor and one of our neighbors were with Sharon today for her birthday. I asked Sharon, "Sharon, do you love me, and she forced out a "yes", and I said thank you". That may have been the last time I will get a response.

The amount of degradation every day is astounding. The dr said the disease is completely in her central nervous system as well as her brain, so there are many striking events that we see from startle fear to spasticity. I saw a big drop from this morning to tonight, and this morning was a huge drop from the night before.

I know this "is not about me", but she has finally gotten to the point where I feel I am at the point to start thinking about the scars this will leave me. Perhaps this possibly explains why so many of my close friends and aquaintences have died over the last few years...to prepare me for this ultimate death. i have to warn everyone when you start to see a lot of death around you, start thinking about something worse hapenning.

The neighbor I mentioned previously: I told him about this yesterday. He then told me that his ex-wife has been in the hospital for 12 years with Huntingtons disease, and his smart beautiful 31 year old daughter just started having symptoms, and his grand-daughter has a 50% chance of getting the disease. I hardly know him, but he sat and rubbed Sharon's feet the whole time he was here, and said that we all must have as much contact with Sharon as possible, since he has had so many years to learn about the realities of neurodegenerative diseases.

So I can say that I would rather see Sharon endure this for a few months than over a decade. So I guess there are bright sides to every cloud.

I now have to wonder where my life will go from here. All of my friends say I have been the most awesome caregiver they could ever imagine, and that they hold me in the highest regard for all of the extrordinary measures I have taken with Sharon. All I know is that I could not imagine anyone would NOT do this for their soul mate and the love of their life.

jf

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