She was on disability before her SAH. i guess that’s one less thing to have to deal with. We still do not have long term care insurance. As far as the suffering i was referring to mentally. Its vary had to watch the confusion, crying, frustration. She is capable of telling me of pain. I was just looking for adult day care near us and so far have struck out. Homecare is available so we might not have to cross the day care bridge.
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Being already on disability is a huge hurdle you don’t have to jump!
I had zero emotions the first few years which had me sounding like a robot. We need emotions to put emphasis on words it seems. When my brain healed enough for those I’d get upset when I’d cry and say “I’m a big cry baby”. I wasn’t one who cried often as those emotions were compartmentalized due partly to my job and my raising. Mom didn’t like us crying. So crying wasn’t helpful but it did help release my frustration better than cursing which I’d promised Dr. Q-W I wouldn’t do. It’s easier to curse than find the right words, too easy.
Frustration really set in for me because I knew I wasn’t carrying my share of whatever needed to be done. I was confused and couldn’t stay on task. I still have trouble staying on task but at least I can recognize it now lol. I could no longer do the heavy house and yard work for the most part those first few years. I was constantly feeling lost. Having a list of chores or tasks that I could do and follow helped a lot.
So I would suggest a few things…when she is having a good moment, have her work out a couple of things she can do each day. It could be something simple as making the bed if she is able. If you have pets, let her feed them. Pets are pretty good at reminding us they need food and water. My Medicare has a company called AbleTo that calls every now and then, it’s for therapy. I’ve done it twice, it’s helped a good bit. I just do the phone and not the virtual visit but if she prefers to see the therapists. (There are 2) she can have that option. The other thing I’d suggest is please make sure she is staying hydrated and eating the proper amount of protein. It may sound like a dead end but it really helped me a lot, still does as a matter of fact. The Nurse Hotline on the back of her card would be a good place to start if none of her doctors have given the amount she needs. They my even have a Registered Dietician you can access. For me it was minimum 90 gms so I had to supplement with protein drinks and bars. Also check the side effects of all the medicine she is on, even the rare ones. There may be one that isn’t helping and another would be better. In my experience, the doctors don’t look at the side effects enough, seems they get hooked on a certain one and can’t see past it.
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