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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Sunday, June 29, 2008

discouraged

I feel so that I have lost my freedom. I don't want to be here. I don't want to be doing this. Because I'm good at organizing and at figuring out medical things I will do well at caregiving. It even takes a kind of creativity to find solutions. But it takes away the time and energy to have much creativity in other areas of my life, to explore and go in new directions.

It is getting light now and I need to move from using my laptop in bed because John has woken up from his chair in front of the TV and is getting ready to go to bed. So I will go for a bike ride before it gets too hot.

2 comments:

Anonymous said...

Pam, I know how you feel, I don't begrudge any time spent helping Frank, but it's like having a toddler, I just can't assume all is well. If there is a bang or if it's too quiet I always feel I'd better check things out. There's very little time left for "me".

Stella said...

Ohh, I know that feeling. You are home from the vacation you have planned for so long and now you and John should be talking about the next venture [probable your fulfilling work]. You can't get past the doctor's visits you are facing... Pam, please try to just let it happen. Be prepared and then drop it for now. You cannot move on until you know the outcome of the visits. Tell us what you find, [We don't NEED to know but you writing it will help send your thoughts where they can be of some help to you] maybe you will find that you and the medical people will understand one another and what a blessing that would be. Your family made memories while on the trip. The memories have not settled in yet. Home is good. Routine for the week end is good. Tomorrow will take care of itself. Oh for a good bike ride!