Frustrations over John's health--Lymphedema

John has had swelling of his legs for at least a year. I think it is related to the stiffness that comes from the Parkinson's, but I can't find any literature on that.  His family practitioner said his heart was fine and prescribed diuretics to be taken when needed, but after 6 months or so those stopped working.  If his legs stay swelled he gets sores on his legs because the skin is so tight it cannot heal.  Finally he ended up at a physical therapist who seemed to know what to do, though she said it wasn't any of the usual forms of lymphedema.  She wrapped his legs in pressure bandages and told him to order velcro-closed leggings which he hopefully can put on himself (at considerable expense--medicare pays for the therapist and her wrappings but not for the leggings).
She saw him twice, then told him he should take off the wrappings when he showered over the weekend and then put them back on.  Or rather that I should.  No instructions.  I guess I should have gone with him.  It actually didn't take as long to do as I expected, but I can't figure out how to do the feet smoothly.  For the first time I am thankful he refuses to shower more than twice a week.  His legs are much better.

That was Saturday afternoon, since it takes him about two hours to shower and soak his feet between unwrapping and wrapping.  This morning he needed my help to catheterize himself, as he had gone out to dinner with a friend and become unable to urinate.  He left a message for the urologist about that last week, and the urologist said it sounded like a bowel problem triggering it and he should get a gastroenterologist to help him with the bowel problem.  Only there isn't any fixing John's tendency to swing between constipation and diarrhea, so that isn't realistic. 
Then this morning he needed a lot of help getting dressed, as it is harder to put on his pants and shoes over the bandages. It takes care, and our son who usually helps him isn't good at that. We did get out to lunch with his 100 year old aunt.

Sigh.

Update on the Lymphedema.  The wrapping works!  The wraps are easier, but he can't do them himself.  The therapist knew he wouldn't be able to do pressure stockings himself.

decluttering

Yesterday we met with a woman about decluttering our house. The idea is that she is an expert on how to make it look good so it can be showed and sold (I have some hope--the lake is predicted to come up another three feet in the next week). She was very clear on John's stuff that needs to be cleaned up, and he seems to accept that he needs her help. Some of it was things that I have struggled to get him to clear up for years, such as at least 50 prescription bottles in the kitchen. But she also focused on some things I long ago stopped thinking about, such as the piles of his clean clothes because he washes them but doesn't get them put away. I feel great relief that someone else will be pushing him, not me. I have to admit it is worth the $15 an hour she is charging us. We can get an undergraduate for $8 an hour, but the undergraduates are in no position to tell John what he needs to do. Now I need to get more of my decluttering done so she doesn't have to work with me. I did pack up another 10 boxes of books to give away and I think I have homes for them.

helping

I really like 'elderly lady in training's comment on my last post. She writes that the pitfalls of helping include:

- being resented for giving help that's needed but not wanted

- getting run ragged trying to give help that is wanted but not needed

- wasting everyone's time by providing help which is neither wanted nor needed (although it never seems so at the time).

It is so hard to draw the line of the help that is wanted but not needed.

I also like the idea of being an elderly lady in training. I feel like I'm having to learn early lessons about letting go of control over my life that most people face at the end of life. And since my grandmother and her sister died of Alzheimer's the long slow way I do keep asking myself what would I want.

I'm thinking a lot about letting go of control and letting go of validating myself by what I achieve (the program I have spent the last five years building may get killed because of budget cuts). There isn't much sense of achievement available in caregiving, it is more like a losing battle against the forces of entropy.