LEWY BODY DAILY JOURNAL

This is the story of Pam and John; she in her early 50’s and John is 62. Pam is a college professor. John taught at a local community college until diagnosed with Parkinson’s in March 2008, then Lewy Body Dementia in April.

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Monday, September 14, 2009

hand problem

We went to the neurologist last week and talked mostly about John's partial loss of use of his good hand, which was supposed to get better (it supposedly resulted from falling asleep in a desk chair and compressing the nerve). It has gotten only a tiny bit better, though I notice the last few days John is doing some things he had said he couldn't do, such as taking out the trash. The neurologist said recovery definitely is slower than it should be, and he was concerned by how the muscles in John's arm have wasted. He wanted John to get electrical stimulation at the physical therapists office first, and if that doesn't work in a couple of weeks he will try a cortisone shot in the elbow.

John's massage therapist is concerned it might have been a mini-stroke. I'm not following that up because I don't think the therapy would be any different and I am not up for a new round of doctors right now.

I'm tired of cutting John's food up for him, and this is only the beginning of the journey of helping him with activities of daily living. Caregiving does not come easily or naturally to me.

Tuesday, September 8, 2009

getting help

We actually are making progress getting packed to move in a month. Today I found a consignment store that looks like a good place to sell some furniture we don't want. We have two helpers, one a strong student and one a woman who can work more independently, who each come one afternoon a week to help with packing. I'm hoping the woman will help John unpack and then slide into helping him manage his things.

I said something to John yesterday that seemed to get through. I asked him to try to find ways for paid help to do the things he can't do any more, instead of expecting me to do them all. Today he asked the student to clean the inside of the microwave and take out the trash.

Saturday, September 5, 2009

I'm here

We had at least one of our kids home all summer but now they are both back at school. My daughter helped me a lot with decisions and shopping for the house renovation (a big help because John shows no interest). I taught both kids to drive (talk about stressful). The house renovations have been intense and are still not done--hopefully by the end of the month. Our current house hasn't sold, though there has been some interest. I've been posting renovation pictures on Facebook and instead of blogging Twitter has been about my speed (what I post there shows up on Facebook too).

John fell asleep at his computer and compressed the nerve in his elbow. The result was that he lost a good part of the use of his better hand. It is supposed to get better, but more than a month later it has improved only a tiny bit. He needs me to change his socks for him and cut up his meat. I wasn't expecting to be here already.

My tentative plan is to move the second week of October. Somehow. I am teaching a full load this fall.

I am grateful that John has been able to continue to take responsibility for helping his 98 year old aunt. She took a bad fall a couple of weeks ago and I met the ambulance at the emergency room, as I knew it would take him too long to get there. But he managed after that. Amazingly, nothing was broken and after a little more than a week at the nursing home she is back in her assisted living apartment.