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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Tuesday, July 1, 2008

Escape fantasies

Today with my therapist I ended up trying to come up with escape fantasies. The idea is that I am feeling so trapped; it would be better if I felt I am John's caregiver because I have chosen that role.

The problem was, I couldn't even come up with a fantasy of running away that seemed at all realistic, even leaving aside how it would affect our children.

If I stayed home but stopped taking care of John, there would be consequences that would make my life worse (or at least I would lose the possibility of making things better). His getting the various disability payments would be at least slowed down (Today I found an unopened envelope in his mail from last week that had a form that was supposed to be sent in quickly). He wouldn't push to try Alzheimer's medication or be tested for B12 deficiency, either of which could lead to actual improvement.

If I ran away, left town, until I wanted to come back, there would be even more of a mess when I got back, particularly financial. My eye was caught by a 30-day retreat next summer, but I don't think that will be realistic then.

The fantasy I wanted to pursue was of disappearing, taking on another identity and getting a tiny apartment and a job in a bookstore in some completely different part of the country. My first reaction what that I would hate to betray my professional colleagues that way. The bigger issue, though, is what a mess that would leave, if no one could access my money because I had disappeared. John would run out of money in a few months and what would he do, sell things? He does have one friend I think would come and help him but no family he is close to except his 95 year old aunt. My mother and sisters would probably end up helping him.

His aunt is a whole other story. She lives in an apartment in a retirement community near us and John is the only family member helping her. She is still sharp but due to knee problems can barely walk with a walker. She doesn't depend on John for too much; she pays someone to drive her. But John doesn't want her to know he has Parkinson's because she already fusses about his health in a way that offends him. I would think it would be obvious but she hasn't asked. He told her he had retired early because of new bureaucratic rules affecting his job. I am very uncomfortable with lying, and this was in front of me (we try to have lunch or supper with her once a week). Not a good situation, with lots of potential to get worse.

1 comment:

Pauline said...

Oh the fantasies! I would in my mind, be in Hawaii sipping on a refreshing alcoholic beverage watching the sun set. Every minute of the day that was not spent directly dealing with Daddy was spent somewhere far far away. I never ran the TV or the radio. It helped me be somewhere else; no interuptions.

I think it was the only way I kept my sanity.

The down side is that now that it is over, I feel guilty for wanting to get away.

I know how you feel...if had I left, what would happen? Someone else would have to carry my load. In Daddy's case, strangers. I could not deal with that part of it.

My real escape was this blog. I spent my days trying to make it something "special". Now I can't seem to leave it behind.

There is a rut here. I'm still in it even though I tell everyone everything is OK.

I just cannot imagine how hard it would have been without Hubbie...even worse for Hubbie to have had the LBD.

Pull your support group together. Your children are old enough to understand and to participate. They need to be with their Dad as much as they can now, while he still has the ability to recognize and remember them. In the long run, I think they will be grateful for the time they get.

Pam, you take care of yourself. You are not alone. We are all here with you.