I just spent 30 minutes typing out a post about Margie and somehow erased it all. So this was written very quickly. I probably left a lot out. Please ask if you still have questions.
Margie has vascular dementia. She found out in January when she was tested by a neurologist and told she shouldn’t live by herself any more. The two months before that she lost about 20 pounds because she would forget to eat and take her medicines.
Lots of confusion in Texas… Glenn couldn’t find any other option than to bring her to live with us.
So far two different doctors have signed orders for Margie to be admitted to hospice. At first that concerned me because I know that they’re usually called in when people have less than 6 months to live. But someone mentioned to me after the first time that they thought that the rules for dementia were different.
Sunday the first hospice RN came over. She told us that they could help us find a board & care home for her & visit her there. Or at the least provide home health care here – bathing, medical visits, meds, Depends, etc. Tuesday the hospice director came over. She said we were just waiting on paperwork — no problem. This was an emotional visit for me . They discussed the DNR, advanced directives, what kinds of care they would provide, what to do/expect in case of emergency, etc. I feel like this was too soon after my moms death to be going through this again. Margie made it clear that she doesn’t want to be kept alive by any artificial means – no help breathing, feeding tubes, resuscitate, etc. I was reading through the info & there was no mention of different rules for dementia – just “six months or less” life expectancy. I guess that kind of freaked me out a little.
So today another hospice RN came & told us that she didn’t qualify because she is still too high functioning. Up, down, up down… yes, no, yes, no… that’s how I feel like our week has been.
Glenn mentioned to me today that he wasn’t going to be shy about asking for help — We Need Help! Neither of us can quit our jobs but she shouldn’t be alone all day. Right now we’re filling in with volunteers. AFter Easter we’re going to have a paid companion for 2 days a week & maybe adult day care another day. She only has her Social Security to live on. Not much. Glenn is also filling out paperwork for Medical & the VA so maybe they can also provide some medical care. But there will also be times in the evening when both of us have to be out. Glenn has a lot of rehearsals in the evenings. I can usually be home but there are a few school events that I’ll have to be at during the year. We’ll need some babysitters!
I’ve found someone that is going to let us borrow a twin bed for her. Right now she’s sleeping on the futon in our living room. Which is another big concern. She has trouble with stairs. All of our bedrooms and full bathroom are upstairs. So her “room” is our living room and she uses the half bath downstairs. When we give her a bath we have to be really careful up the stairs. I haven’t been brave enough to do it on my own yet. I only do it when Glenn’s here to help her with the stairs.
BTW, Blogger looks different today did they change something, or did I?