Nineteen months ago I began caring for my elderly parents. My siblings are no help...In fact they do not come see her at all - neither do the grandkids or the great grandkids. Mom's dementia was out of control for a while.
I have worked hard to get her physical health managed - including diabetes, food allergies, etc. Dad died a few months ago so now I have no help at all.
So there are a few things I need thoughts on:
1) She is not sleeping well and we are now awake at 3:30 am again. This means I do not sleep and am feeling tired a lot. It is not a huge issue yet, but if I cannot figure out how to get her to sleep at night (no she does not sleep all day), it will take its toll.
2) She constantly says, "What shall I do?" Any ideas what she is really saying or needs?
3) She does not qualify for Medicaid nor is there a lot of extra cash for additional help. Any ideas for getting respite for me?
As mentioned, medication management has been crucial. Things were going well for a long time then recently, of all things, he started hitting himself in the head at night keeping everyone awake again. This seems to be the way it goes with most dementia, plateaus where it seems as things are ok for a while, maybe you will perceive they are even better, and they they begin to decline again to another level of plateau.
By the way, what makes you say she won't qualify for Medicaid (I presume you mean financially, not medically)? If she can't afford adequate home care and doesn't YET qualify for Medicaid it means she is somewhere in between. If so, then I would strongly urge you to explore Medicaid planning now. It may be very possible to qualify her for Medicaid home and community based services immediately while preserving remaining assets for her benefit.
Doing so will afford you more options which you will certainly need as you move along the continuum of care with your mom. I have found that the local Area Agency on Aging is a great place to find respite and other resources.
By the way, if her husband was a veteran she may be eligible for up to about $1,000 per month for care. Search for "veterans aid and attendance"
Maybe it's that she just wants to talk as we do laugh together. I am so glad when she laughs as it's almost as if I'm the only one who makes her laugh out loud and that makes me happy. However I would like her to go to sleep for atleast 6 or 7 hours just so I could get some sleep too.
So if anyone has anymore suggestions on this I'm interested too.
As far as respite from care, yes there are options. I have found that there are volunteer groups where a suport person will come out to give you a break. You might want to check in your local newspaper for support groups as well. Also, you may want to talk to her Dr. about a sleeping medication. You must take care of your needs which is hard I know when you have constant demands on your time. I wish you all the best and just know what a wonderful thing you are doing. I know it sounds like patting yourself on the back but you deserve praise.
Dad has been the strong one and just this week is having complications. So I am dealing with caring for both.
Anyway, have you discussed help with home care through your mother's doctor. I finally did that this week. They were able to refer me to a local service. Now I am waiting for the evaluation for the extent of care they will get. My parents are under Medicare and FBCBS.
I really can sympathize with the sleep issue.