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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Wednesday, August 20, 2008

about me

I'm doing a journaling workshop for caregivers and this week's assignment is to write about ourselves. This is what I wrote (with prompts in red):

Write about who you've become.
I’ve become several things I never thought I would be. I’ve become an administrator on a small scale, running a program at work that I deeply believe in and that has a significant impact (every student in the university has to take a course in our area). I’ve become an athlete. And now I’m becoming a caregiver.

Write about who you used to be.
As a child I tried so hard to be good. I was sexually abused by my mother and grandmother but I hid the pain all too well. School was my safe place. My junior year of high school I got excited about learning and carried that through college and graduate school. In college I discovered feminism, which gave me a way of accepting myself as a woman, but I didn’t expect that I would marry. Feminism even led to my first interest in religion (having been raised in a culturally Christian but atheist family). I was baptized when I was 27 and joined first the United Church of Christ (I’m now an Episcopalian).

I was 31 when John and I married and he was 41—a first marriage for both of us. We understood marriage to be an equal partnership. Our first child was born three years later. After our daughter was born not quite three years later we had a tough couple of years; first our son had kidney infections because of a problem that was corrected eventually by bladder surgery, then he was diagnosed with Attention Deficit Disorder and language issues (we just barely escaped an autism diagnosis), then he had eye muscle surgery. He’s now doing well going into his senior year of high school but I do worry about finding the right college.

I did a lot of work from about 1995 to 2005 on my own inner healing with the help of a wonderful patient therapist. I learned very much to trust my own journey. John was very supportive, though a lot of responsibility always fell on me because I was a better organizer than he was even as I took myself apart and put myself back together.

Write about what is and/or is not working in your life today.
Today I am confused. John is in the very early stages and friends say they don’t see him as having changed, except that he moves more slowly. Yet I have had to take over most things that are complex, such as financial planning. He did take our son to visit colleges for two days this week, and they report that the trip went well. He made those arrangements himself three weeks ago, but it took him all week. He was too busy with that all week to fill out a form related to retirement or send a package he said he would send or go to exercise class or physical therapy.

Mostly I do almost all the family organizing, while he can still take care of himself. But even doing all the organizing feels overwhelming. It is hard to decide how much taking care of John needs. I go to all doctor’s appointments with him, and I remind him of things. I straightened out his medications in May and the prescriptions are messed up again; I may need to take that over soon. I feel like he isn’t my partner any more, and I feel guilty about my coldness.

I hate most how unpredictable everything is. I don’t know how to put the pieces together.

2 comments:

Spouse said...

Ok if you and others say that journaling helps-- I'll give it a try--
Somehow I really blew it !!!
I have to say that I do not feel the outcome of our sudden 2 day schedule change, gained anything good for any member of our family-

We planned for 2 or more weeks for a nice end of summer weekend with our Daughter and 16 year old Grandson, His 16 year old friend, and 14 year old Granddaughter at our summer cottage at the River. Planning also included 2 of GW's sisters from out of town, and having well loved friends come for an afternoon and dinner - including their extended family.
Our daughter called to say the plans had to change to Wed. Thurs, Fri. because of extra practices needed for after school sports and uniform measurements, etc. so we did make adjustments to meet at least our arrival there for Thurs. afternoon.
Then Daughter calls to say the plans changed again-They will arrive on Tues night and leave on Thurs noon. When I tried to explain that I had a very full schedule for Wed and Thurs, The fact that she was driving 7 Hours each way to give us a chance to interact with our grandchildren and we would only have to drive 2 hours each way was enough to give me the guilt trip to make it happen. So as a result I let down my 3 friends and canceled our usual mahjong group Wed eve. and also Thursday's Doubles Tennis group had to cancel, as well as the caregiver that usually worked for us every Thurs. AM.and GW's daycare classes. Solving the problem of the cute little poodle dog that comes here when her owner goes to work every day was easier--she got to go with us for the whole trip, and turned out to be our easiest houseguest ! Even tho she had never been there before and had only dusty dry dirt instead of green grass to do her business -there was not one accident from her !!!!!
Teens were annoyed with me because I denied their request to drive the golf cart. They thought they should be allowed to take it just to ride around in, because Grandson now has a drivers license even tho it was purchased to be the transportation to get GW to places within the park. Unfortunately the kids also felt they needed to sleep till at least noon on their last weekend before school, which would not have been a problem, except that they then also felt the need to stay up till 3 AM when their Aunties were trying to sleep in rooms nearby. Of course, over our morning coffee, we discussed the events during the night and played a cribbage game as we were waiting for the younger generations to wake. of course we were overheard.
My big mistake was making an exclamation when I stepped barefoot on gum on the deck floor and also mentioned that gum had been found on last night's dinner plate during washing. With that My Daughter started screeching at me saying that I and my inlaws were being "picky old biddys". Stupidly I did attempt to vocally defend myself.
All this upset GW totally !!! He became very anxious afraid that this was a terrible end of the world battle and no amount of reassuring from any of us would calm him down. He was afraid I would leave him- He would not sit down, he wouldn't even go into use the bathroom. just kept saying "we have to fix this" each of us tried to tell him "it is OK it is fixed"
an hour later he was still very anxious. I finally realized the only thing I could do is to distract him. I asked each member of the family to help me make him laugh. Tell a funny story- make everyone laugh. I started with something cute he used to do as a trick on his little sister- Then each of his sisters started telling stories of funny things that happened when they were children. Granddaughter told a joke then a few more jokes got everyone laughing. IT WORKED !!! When they all left an hour later there was no mention of any problems. I believe he will not ever remember the altercation. It actually cleared the air for everyone also.
This is an example of what I have been aware of for several years now. If there is any thing that causes me to be upset, he will be 10 times more upset. once he becomes anxious it is almost impossible to sooth him. I can never raise my voice, scold the dog , or show frustration with whatever he does. Yes, it is very difficult to speak in a monotone at all times.
So Do I feel better now that I wrote this all down? No! I feel like a complainer That cannot even allow kids to be kids and be spoiled by their grandparents.
I feel like I've let everyone including my self down and spoiled everyone's week. I'm very glad that I have found a class I am signed up for on how to deal with the frustrations that may occur caregiving someone with dementia. Wish I had already had the class I might have been able to handle this week better !
Di

Pam said...

Oh Di, you tried so hard and it didn't work. You deserve credit for giving up so much to adjust to the needs of other family members. And even when they wouldn't give you a break, you came through heroically and saved the situation.

Journaling works for you if you feel better about it for having written it down and shared it. You've helped me with what you shared--reminded me that sometimes trying to be cooperative doesn't work and that when things go wrong humor can be a way out.