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.
And yes, he's doing the best he can and doing everything anyone could do. I just wish there was some real relief for him. It hurts to know how hard this has been on him, and how hard it continues to be.
Someone on the yahoo group for his wife's condition described being a caregiver as a nightmare that you can't wake up from. I think that's a pretty good description of the situation. It generates the frustration and the feeling of helplessness that we get because we can't change things and can only respond to the conditions and behaviors as they are presented.
But it is satisfying to know that we are providing the best care we are capable of.
Soldier on!
Your suggestions about getting her to eat more (allow her to eat what she wants) are my suggestions as well -- so far, Dad is still fixated on a "healthy diet." I've noticed that she likes sweet things and when I'm there I try to make the old favorites (to h*ll with the calories!) and I always bring dessert (which Dad never wants in the house). I figure when someone is 90 years old she deserves to eat whatever she wants!
And yes, I need to let him know more often how great a job he's doing and how lucky Mom is to have him. That's probably the best advice anyone could give me.
So I'm the one who needs to adjust my thinking. At 88, it's unlikely he's going to change.
You guys are all great!
I am sorry
Thanks again, everyone.
Stress has just become a way of life for him, and he can't see beyond it. I'm going to take all of your advice and stop making suggestions. I'll just express my concern, tell him how sorry I am that this has happened to him, and offer my continuing help and support. I just wish he believed that we all really do care about him.
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
At this point, the only ones my father is really close to are the aides that work for him. Two of them, in particular, have become real friends to him, and he says that they're the only ones he can really talk to. I'm in touch with both, and we've discussed Dad's situation, but neither of them want to rock the boat. Part of the problem is that he's paying them VERY well (more than the agency pays them), and the like things the way they are. That sounds harsh, and they're both great people, but they don't have any real incentive to push my dad into doing anything he doesn't want to do. Additionally, when he's around them, he makes an effort to sound upbeat. When he's around me, he makes no effort at all.
I'll probably never stop trying to "fix" things, even if only in my own mind. It's hard to admit that what's happening to my dad is pretty much his own choice at this point. It's not the way I'd handle things, but I guess he has to do what works for him. The challenge for me is to avoid letting it bring me down, which isn't easy.
The doctor issue is even more difficult, since Dad won't share any information with me (or with my brother and sister), and he does not consider his situation to have anything to do with his own health. It's all about my mom, he says. Everything he does is for her, and she's the one with the health issues. Well, my mom is fairly comfortable in her life, such as it is -- she isn't in pain, she sleeps all the time, she recognizes all of us, and even though she's weak and feeble, she seems content with her chair, her crossword puzzles (which she can no long do effectively, but she still loves playing with them), and her cat (her biggest joy). Dad is the one who's suffering.
I wish I could get him to see someone, or to talk with his PCP. But it seems unlikely at this point.
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.
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.
I think you're all right, and I should refrain from the suggestions, since that's not really what he needs right now. I just need to take a deep breath and realize that this is something I can't control, either. Thanks again.
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.
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.
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.