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.


Monday, May 26, 2008


Our son came home from boarding school a week ago and he and I, working an hour or so each evening, have gotten his room almost completely organized. It won't stay that way, he is ADD like his Dad and he tends to put things away by just piling them up. But for a while at least there is space to pile them, and even room for all his books on his shelves.

I wish it were as easy with John. He is proud of himself that he has actually gotten rid of stuff--five or six boxes of books and 15 boxes of documents (I found a graduate student who wanted those and came from Atlanta to pick them up). Some of the boxes of documents were on shelves in the unfinished part of our basement, and so when the boxes went I was able to put camping equipment that was piled up on the floor away on the shelves. The floor of the central part of the basement room was actually clear! I feel a big relief of stress when I see things in order.

It lasted two days. Then John brought home boxes and boxes of stuff from his office and put them in the space I had cleared in the basement room. He plans eventually to find space in his home study for the things in the boxes, but will that ever happen? He reports he is making progress on his home study. I am encouraging him to work on it with the student we hired to help him move. Even if there isn't that much that the student can do to help, I don't think John will make any progress without someone working with him to keep him focused.

I'm a naturally fairly organized person, but a full time job and small children and my own inner journey overwhelmed me and our house has been a mess for years. In the last year I've made a lot of progress on my part. But the very most frustrating thing is getting my stuff cleared off a table or countertop or getting a room into order, only to have John pile his stuff there.

He thinks I am overreacting because he has always been somewhat that way, and usually gets things done eventually (months later). I may be overreacting to what I see as intensification of patterns that have always bothered me, such as hoarding and difficulty with organizing, because I fear it will now get completely out of hand. There are four grocery bags of cans of soup on the floor in front of the shelves in a pantry area that have been there for months (in an area I cleared out six months ago). I suppose I know that isn't important in the larger scheme of things but I get so frustrated when I get things organized and feel a reduction in stress and then John ruins my organization.

As I read messages in the Yahoo LBD spouses group, what I see is an ongoing pattern that it is hard when the person with LBD is still trying to do something for himself but can't always manage it well. It gets easier in a way when they just can't do it, but I shouldn't be looking forward to that.


Spouse said...

Wow !! this brings back memories of how frustrating it was when we moved back to California, from our Hawaii coffee farm. The more I tried to help my husband organize the tools and things from the tractor barn, the more insistant he became that he could do it himself. I encouraged him to place every thing he wanted to take into one corner so we could box them up, and I did place several things there as a starter. Then the next day he would move everything, and become angry with me if I mentioned it. It did end up with the crew loading the container grabbing the few things we pointed to, so much of what he had wanted was left for the new owners. At this point it is just as well, He would have tried to use those power tools here. Even with what did come caused me to be fearful that he might use them while I was out shopping etc. so I hid many things. I was happy that he did dismantle his table saw, I figured he would never get it put back together-- Now he has lost all incentive to do any projects. But once or twice a day he will ask me what he can do to help--I'm having trouble finding things that he can actually do, that I don't need to clean up afterwards. He was always my handyman--I really miss that too.

Pauline said...

Daddy was the same way. He was always doing something with the tools or machinery. It frustrated him so when he was no longer able to figure out how things worked. I think the hardest thing for him to accept was not doing laundry anymore. Probably because of him working in the laundry in the Navy. He was always so good at it, then he could not get his thoughts together enough to sort the clothes. Such simple things you do not appreciate until they are gone.