My mom is 90 and suffering from dementia -- she also has severe mobility problems (she spends most of her time either in a chair in the living room or in bed) and arthritis. Dad (he's 88) has been caring for her at home, with the help of round-the-clock nursing aides. I live about 4 hours away -- I call regularly and visit when I can (about once a month, on average).
Dad says things are deteriorating -- Mom is sleeping more and more, she resists getting out of bed, she doesn't eat well (at least not consistently), and becomes argumentative and uncooperative with him and the aides. He's stressed, depressed, and sounds hopeless when I speak with him. He says I can't ever understand, and he resents any suggestions I make. For example, I have suggested he get out of the house in the afternoons, when she's napping, even if it's just to go down to the park. Anything to get a break from the environment at home. But he gets angry with these kinds of suggestions and says I just don't understand.
I'm not sure there's anything I can do, but I know many of you on this website have experienced things like this. If you have any suggestions, I'd appreciate them. Dad has also been a very in-control and proactive person (he was a high-power attorney in NYC until his retirement 13 years ago), and what's happening in his life right now is devastating him. He's exhausted and constantly anxious.
One specific question: Dad gets particularly upset if my mom won't get up in the morning and get dressed. I understand that part of the problem is that the overnight aide (who must leave by 6:45 AM) is the only one who can physically handle getting her up and dressed, so they wake her up at 6:00 each morning. I'm wondering if things might go better if she was allowed to sleep until she awakens on her own. I've tried to talk with Dad about this, but he just repeats that I don't know what I'm talking about.
Sorry for the long-winded post. And thanks in advance for your help.
But it's not you. He's depressed because he's living a very depressing existence and some people with depression are unable to just turn it around and make a change.
Even if you lived close by there would be little that you could do for your dad since he is refusing all offers of assistance. You can't force your help on him when he doesn't want it.
Even if you do think it would be better for your mom to sleep in your dad won't discuss it so what can you do?
When you talk to your dad, before you hang up, say to him, "Call if you need anything" and let it go with that.
Your dad thinks he's an island, which is very sad. None of us are islands. He has a lot of resources he can call on, but he's too proud and stubborn to see that.
Be aware that caregivers frequently die before the people they're caring for, so he may be killing himself this way. That *might* be a tactic you could use with your dad. He needs to keep his health for the sake of his wife/your mom. This website says that 30% of caregivers die before the people they're caring for.
Here's some data for you: "One research study found that elderly people who felt stressed while taking care of their disabled spouses were 63 percent more likely to die within four years than caregivers who were not feeling stressed." Here's where that's from: http://www.womenshealth.gov/publications/our-publications/fact-sheet/caregiver-stress.html#e
ba8alou, no, she's not on Hospice. This, too, is a subject Dad doesn't want to discuss. I am in touch with the aides, and I don't think she's in immediate danger of dying. But she has definitely grown weaker in the past six months. I try to talk with her at least once each week, and the last few times she has sounded very weak and tired. It's very sad.
I have tried to discuss counseling with Dad (my husband is actually a therapist, and he's tried too), but he won't hear of it. As far as I know, he is not taking any meds, although this, too, is something he won't discuss. He had pancreatic cancer about ten years ago, and he didn't tell me until recently (he says he has made a full recovery).
Thanks again for your responses.
So if your dad is at all like me, he's got to come to his own understanding of what he can and can't control and until he does, he'll be miserable and unhappy. He may never figure that out, since probably most of his life he HAS been able to control most things in his world. So I agree with the suggestions of being sympathetic and listening and probably stop making suggestions, since he feels like he's got to handle it all himself.
Even if you were there 24/7, you probably wouldn't be doing things the way he would think they should be done. (I've been known for that myself). I feel for your dad, because it's a difficult place to be - trying to be perfect and controlling in a world you can't control. So {{hugs}} to you and please keep us posted.
Your Dad is doing the best he can & will have to come to terms with this himself.
"Know that I/we are here for you Dad; whatever and whenever you need."
That alone will be reassuring and let him know he can count on you. By all means stay in touch with the aides & continue to monitor the situation. He doesn't seem to want to let go but eventually will have to. All you can do is try to ease the trauma for him when he must. In hopes of peace for us all.
LearningCurve, you're right -- Dad is doing the best he can, and there might not be anything any of us can do right now to make it better. I keep telling him I'm here for him and will help in any way I can, but so far that doesn't reassure him in any way (that I can see, anyway).
But I can see that this is my problem to deal with -- and I have to separate my own feelings of helplessness and guilt from what's really happening with Mom and Dad. That's hard, but necessary. Thanks again for all your supportive words.
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