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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.

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Being a caregiver husband suggestions are easier said than done wish doctors would explain to the alzheimer patient what lies ahead and the need to be looking at a ASL home as caregiver is wearing out
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Very true, terry. When my mom first developed symptoms, it was all very sudden, and Dad was convinced she would recover and "be her old self again." It took him a very long time to realize that it wasn't going to happen (years, actually). And now he's in that "nightmare" you describe, without respite. He's lucky to have the aides (I know he couldn't do it on his own, not at his age), but nothing can take away the day-to-day grind, the tension, the anxiety, and the fear he has to live with. He worries that she will die, but he worries more that he will (and then he can't imagine what will happen to her). My sister and I have tried to talk with him about it, but he always shuts down. I don't think he can face it yet.

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.
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My friend just sent this to me and I found it comforting in a way:
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!
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Thanks, Fixer -- yes, those are all things I've tried with Dad. Unfortunately, Mom isn't mobile enough to get out of the house for anything other than an emergency (or doctor's appointments) -- it's a huge chore to get her down to the car, and she always has a hard time recovering when she gets home. They used to love going out to dinner, and I know Dad misses it very much, but that isn't going to happen anymore. I've tried getting him to go out with me after she's in bed (she's usually asleep by 7:30, and the aide is with her, so we could have a late dinner then), but h e really doesn't want to go out without her.

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.
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As my name implies I have the same fixer mentality, so here goes (it's hard to change our nature). I would encourage things to benefit mom that might have the added benefit of helping dad. My mother had dementia and passed away in April, but she loved listening to her old records and watching old movies and it was very relaxing and uplifting for us as well. Beautiful songs and simpler times. Mom also ate better if we went out to a buffet, we always put jello and pudding on her plate (her favorites) and anything she was interested in. She got to where she always wanted french fries. Even though she could shuffle around the house, for going out we had a wheel chair we used. Just a few ideas to get them out and bring a smile. Perhaps you could share a good book with dad that would transport him for a while, send flowers. Sometimes it's the little things that make the biggest difference, try to always smile when you talk and be affirming: I love you, you're doing a wonderful job, thank you for take such good care of mom... It's a hard road, but it will come to an end, so keep an open communication with dad because he'll really need you then. Wish you the best.
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Thanks, Ismiami. And yes, he really has been in denial all of his life about his depression (which permeated my childhood). I really thought my husband would be able to get through to him, but no luck. Dad says therapy and medication are great for those who can't "pull themselves up by their bootstraps," but he needs to think of himself as strong. This stage of life hasn't been fun for him -- he was a legal superstar, head of a major NYC law firm for decades, and now it's just him, his rapidly declining wife, and a rotating group of aides. I just wish he could see me as an adult (I'm 62!) in whom he can confide. I'd love to be able to talk to him about more than the weather, my mom's sleeping schedule, and what my adult sons have been doing. But every time I try, he shuts down. I think it's just too hard for him.

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!
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Just continue to love him and her. I am sorry for his suffering and yours. Dad needs help for depression, but that is impossible if he has an ongoing lifetime of denial.
I am sorry
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Yes, ba8alou, I know the rowboat story! And it certainly fits Dad's situation. He worked very hard for 70 years, made a lot of money, and then almost immediately upon his retirement, he became the caretaker for my mom. As she's deteriorated, so has he -- in spirit, if not in body. I'm very sad for him, but I wish he would take advantage of the people around him who can help (very few people have the resources to pay for round-the-clock nursing aides so that he isn't tied to the house 24/7). I honestly think he wants all of us to be miserable, since he is miserable. That sounds cruel and uncaring, but I don't mean it to be. I love him a lot and wish there was more I could do. Right now, I'm just trying to put it all in perspective.

Thanks again, everyone.
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Poor dad. Tell him we all wish him well. There's a funny story I just thought of, you probably heard it. There's a flood and a guy climbs up a couple of floors and someone comes by in a rowboat, but he tells them that God is going to rescue him. I'll spare you the rest, but he gets to HEAVEN and he says to Gid, why didn't you rescue me? And God says, I sent you a rowboat, an met and a helicopter and a helicopter.. what more did you want? God and nature help those who help themselves Human brains discovered antidepressant medication so that we don't have to be unreasonably sad, an tipsy choice so we don't have to see what's not there. Help is available for those strong enough to see that their egos are not the be all and end all.
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blannie and ba8alou, thanks for that info. Dad is concerned about that -- I know it's one of the things he worries about. I think he's worked himself into the martyr role, and he doesn't know how to get out of it. He seems to think that if he made things better for himself (got help, joined a support group, started seeing some other people, etc.), we'd stop feeling sorry for him and none of us would ever call him. It's not true, of course, but there's no telling him that.

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.
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I'll just tag onto what Blannie said, my aunt died of a heart attack while caring for my uncle with dementia. He lived quite happily for several more years.
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Well about all you can do is to ask him, "Dad, what can I do to help?" If he says nothing and goes on to list out his problems, just listen and say, "I'm so sorry you're going through this. If there's something I can do to help, please let me know." Then you've done what you can do.

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
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I'm afraid my dad never had any real friends, and he hasn't kept in touch with any of the partners in his law firm. He has no religion (so go luck with minister or rabbi), and he's the last of his family (his younger brother died about 5 years ago -- they were never close, but they did talk, and the brother was a help to me as well).

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.
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K, I'm so sorry for this. Sounds like you're in a tough spot, unless you're willing to play hardball. And it doesn't sound like your dad is someone I'd play that with lightly. Any ex-law partners who could weigh in on this? A minister, rabbi etc? But you've thougth of that already. I'm still doing the "fixing"thing!
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ba8alou, I'm afraid my Dad isn't a fan of psychiatry. He's suffered from depression all his life, but he won't acknowledge it. As I mentioned earlier, my husband is a therapist, and he has tried to get Dad to see someone, or to join a support group. But it's no use. He considers such things as evidence of "weakness," and even though he complains about how stressed he is, how anxious, how little sleep he's getting, etc, he won't admit to needing help (which would be a "weakness").

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.
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K, can you get your dad to see a doctor, preferably a geriatric psychiatrist? If not, then his own primary care doc?
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ba8alou, that's exactly what I tell him every time I talk with him. The problem is, even that makes him angry. He thinks none of us understand what he's going through, and whatever we say isn't enough (and doesn't do enough to acknowledge his suffering). Sometimes I can get him talking about something else (his grandkids, something going on in the news, anything that's outside the bubble), but lately he's just been too depressed.

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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Of course you want to fix everything. We all want to "fix" and that is where your suggestions are coming from. Your Dad would fix it if he could. Right now he probably thinks getting your mom up every morning at 6am is maintaining the status quo. Routine is very important to the elderly, especially where Dementia is concerned.
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.
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"I'm so sorry Dad; this must be soooo hard for you". that's probably all he wants to hear. Good wishes going forward, from a fellow "former fixer".
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ba8alou, I have already sent Dad a link to this website (several months ago, actually), but I have no clue whether he ever followed up (he's never mentioned it). And blannie, thanks so much for sharing your story -- yes, Dad's need to control is definitely a huge part of the problem. He and I are a lot alike, so I understand him more than he thinks I do. I just realize that so many of the things I want to control aren't possible to control. I wish he could realize that, too.

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.
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ba8alou, that is a fantastic idea. Hopefully kacunnin's father would do that, and her Dad could search out questions/discussions that he feels no one understands how it is.
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Send Dad an email with a link to this site. he may find some validation in reading the stories others post. and as a lawyer, I'm sure he's got some great advice to give. We certainly can always use legal expertise on this site!
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I think your dad is having a hard time dealing with something he can't control, since you said he's an "in-control" kind of guy. I have always been a perfectionist and was very upset when two friends died of cancer and I couldn't "control" that (like I ever could!). I also have had my mom and dad and caregiving for 13 years. For probably 12 of the past 13 years, I was pretty miserable because 1. I couldn't turn back time and make my parents young and healthy and 2. I couldn't make things in my world perfect, no matter how hard I tried.

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.
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K; my heart goes out to you and to your dad. Be well and let us know how things are going.
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Eyerishlass -- thanks for your input. I think you're right; he doesn't want the suggestions right now. My natural instinct is to try to come up with things that would help make things better for him, but I guess nothing can make things better. He knows she won't be around for very much longer, and it's killing him. Her sister died last week (at 94), and that, too, has probably effected him. I appreciate your saying it's not about me -- too often I feel guilty that I can't do more, but there probably isn't anything I can do.

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.
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Is mom on Hospice? I understand that your dad is not open to suggestions, but it sounds like he thinks she's dying. If she is, that would be both validation for him and more and more appropriate help for them both. Is there anyway that you can get dad to his doctor, or to a geriatric psychiatrist? Is he on meds? Can you make a trip there for a scheduled appointment for him and a doctor?
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While your suggestions are good ones and are meant to assist your dad he doesn't want suggestions so just let him be. Whenever you speak to him just listen to what he has to say and hold the suggestions as they seem to irritate him more.

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.
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