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, November 2, 2009

Not sure of anything

My packing went well Sunday but it was hard today to have to deal with last minute renovation questions and my job as well as getting ready to move. I can't tell whether John is going to be ready to move or not. I suggested he might want to stay in a hotel the night before moving day but he didn't think that would be necessary. I may suggest it more forcefully.

Today he asked me if he needs to cancel physical therapy and massage appointments on moving day. I told him yes. I think moving day is going to be overwhelming for me trying to make sure everything ends up in the right place. I also told John that in the two or three days after we move, the woman who is helping us pack and unpack would put away his clothes and set up his partial kitchen without him if he made other plans in the afternoons.

I got some packing done today I had been avoiding, but now I'm feeling discouraged. The big chunks are getting done but that makes the small scattered things more visible. And the most unreliable person I hire, who was a big help Friday, didn't show up today.

I have people who offer to help, but I don't know what to ask for. I'm thinking I want to organize a picture moving and hanging party for Friday (after the movers move the boxes and furniture next Tuesday). What can I get a 12 year old boy who really wants work to do? Do I want friends to help on moving day or do I need to be able to focus on telling the movers what to do?


LewySpouse said...

Since you are moving near by, you might try what my daughter did last week-
Have the truck make several trips taking one room at a time, starting with the furniture that needs to be placed first. this way there is no need to remove things from dresser drawers-- just remove the drawers to lessen carry weight. boxed things go into the truck first, then the furniture then the rugs. This way everything in the truck would be automatically placed in the proper room and in the proper order as it comes off the truck.
Since you have friends willing to work, assign each to a room where they can be working while the truck and movers go back for the next load. The kitchen might take 2 helpers. In advance, You would need to mark the cabinets and drawers with notes as to where you would like to place dishes glasses, Food supplies, towels,toaster, etc.
We moved from Hawaii, back to the mainland when my husband was in about the same stage as John. We found it was much easier to get everything placed when he was not at all involved. I advise that you have one of your dear volunteers assigned to keeping John away and occupied the entire day !!!
Looks like you have been doing a great job of staying focused, and multitasking this past few months. I know it's not easy- but a job that must be done- so just do it and overlook the fact that John is no longer able to assist. Finding ways to get jobs done with less stress on yourself is the best-
Having a plumber that likes to show off his toys is a perfect example !!! good job !!!
Good luck on moving day !!!

LewySpouse said...

Your 12 year old helper could be in charge of taking away all the empty boxes and wrap paper -Make sure he can safely handle a small box cutter to cut the tapes and he could even break down the boxes.

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Martin said...

I lost my father to LBD in July of 2007. He was 78 years old.

My mother and I were fortunate that a doctor recognized the symptoms and made his diagnosis and then offered suggestions such as Power of Attorney, a DNR order, etc.

Daddy became worse in the evenings; hallucinations would set in and he would want to go home to his wife or he needed to go see his mom and dad who had been dead for 30 years.

Your blog leaves off almost a year ago so I don't know where you are in the progress of your husband's disease but I feel your pain and your anxiety; I have been there as has my mother who, fortunately is quite the healthy 81 year old.

My Dad didn't know me the last month or so of his life. He knew my son though and would actually brighten at the sight of him. I was called at my office to tell me that I needed to come to the nursing home right away but he had passed on before I arrived. My son, wife and my mother were already there.

It's a horrible disease and the stress it puts on the family is unbelievable.

I wish you both nothing but the best.