My husband just wants to stay in bed 24/7. He says I’m nagging him when I tell him to get up and get dressed (which he is still capable of doing). He doesn’t want to eat and has been hospitalized for dehydration in the past because he doesn’t drink enough water. He doesn’t seem to be interested in anything. It’s a daily battle trying to get him to eat and drink. He takes medication daily and needs to eat/drink. I’m afraid he’s going to end up in the hospital again at this rate. Any suggestions?
I have a very wonderful friend that told me last summer, “You need to let them be who they are.”
If you have tried everything, and they are safe and not neglected, all the frustration and anger and nagging will not change a thing. A person does not have “some” dementia. Dementia is brain damage. If your loved one was not lazy before, but they are now, dementia has changed their brain.
If they have heart problems, their heart has changed, and they are not the same person they were.
The biggest hurdle for for me was realizing my father and my husband are changed forever. It will never be the same relationship we had before this. They are not the same people. My father with vascular dementia, my husband with chronic pain and bi-polar. I have a new relationship with them that is based on what they are now. And with my own life that I must live on my own terms.
If you have run out of things to try, the only option left is to accept the person the way they are, and go from there. That person you had a life with is gone, so a new relationship and way of living is starting. I hope people reading this understand what I am trying to say.
I am not a mean or uncaring person, but I have found peace with allowing people to live out their lives as best they can, without trying to change them into who they were.
Mine does/did the same thing. How old is your DH? Mine began the marathon sleep sessions years ago...managed to work FT AND sleep FT. Used most vacay time to sleep and ALL sick time and "comp time."
My DH has basically, severe, untreatable depression/anxiety. He had a liver transplant 12 years ago, and was handed a miracle in that. Didn't change anything. He recovered, but started the depression in the healing process and never dealt with it. IS not compliant in his own care.
About 5 weeks ago he had a heart attack, then 2 weeks later, another one. He's worse now that he was before. Won't get up, won't eat at the table, just sleeps all day everyday. Every few days he gets 'yelled at' by somebody (one of the kids, me, one of his many drs) and he gets up for one day, overdoes it, activity wise and is bed bound for 2-3 days.
Panic attacks have had us back in the ER twice.
He's irritable, angry, unkind to me and is just rude enough to keep me at arm's length, so I do not want to be near him.
Best advice I got, I got from a friend last week. She said 'You don't want to leave him, you don't want to stay, how about just co-existing with him? Do what you need/want to do, make meals and put them on the table and if he wants to get up, he will. Stop nagging. Go out with friends. Take a nap. Ignore his whining."
Well, I am working on that.
You can make that same decision. It's really, really hard. I feel unloved and yet VERY needed at the same time. He's in a foul mood all the time. And this is probably the best he will ever be.
I haven't totally accepted this as my "future"--it's certainly not what we'd planned. I am getting a PT job soon and plan to be NOT at home as much as possible. Basically, living a single but married life.
I imagine that on this site, I can best relate to what you feel. You didn't sign up for FT caregiver for a healthy but lazy person. You feel cheated and angry. Your kids (if you have any) alternately think you are too kind to him or too mean. You can't win. He won't listen and doesn't care. You are doing all the caring.
I have tried EVERYTHING short of leaving and asking for a divorce and leaving him alone--and I have told him once that I was going to do just that if he didn't try to have a life. Didn't really rock his boat.
My heart aches for you. Really.
Wish I had something besides platitudes to give you. My DH has walked to death's door times and knocked LOUD to get in--yet he keeps living. I wonder why. He wonders why. But then he just rolls over and watches more FoxNews.
I'm so sorry.
{{Hugs}}
Liz
I’m glad there is this support group that understands. Thanks for your help.
My DH slept ALL weekend. He made himself one meal---dill pickles and beef jerky. Even knowing I would be home from church by 4 at the latest, he simply filled up on this weird combination of foods. (He refuses to cook, although he will make eggs, which is all he can cook, if he's desperate)
He actually went to the office today, I am sitting here in absolute shock--b/c I know he doesn't have the energy to do this, and also, he hasn't sat up for more than an hour or two in weeks! I'm positive he'll be home by noon and back in bed. He's making sounds about retiring--and we simply cannot afford for him to do that. We'd have to hire out all the things I do for free, as he cannot do them--and I'd have to go to work to pay for healthcare ins. He cannot make a decision about this--and my feeling is, he needs to work to have ANY semblance of a life. --work is his number one love-w/o question. It's kept him sane and moving for the last 12 years of bad health and serious depression. He now has succumbed to the depression and has given up.
We all have a "similar" problem--a person who wants us to live and breathe for them, but not by nagging or chastening them. I have yet to figure out how to do this.
I haven't slept in our bedroom for 3 years. He chose the TV over me, so he has filled the master bedroom with all his junk. I keep it clean, but only b/c it's a room that people can easily see. It breaks my heart every night to get ready for bed and he sets the TV for FoxNews and we're off to the races. He doesn't talk or interract with me at all once the TV is on. That's the "shush now, go away" sign. And I do.
Today he sees his psych doc. I have zero hope that she will even try to help him. Just a box to check off, she doesn't care about him. He'll see his cardiac doc on Friday, and I know he'll lie to the doc and tell him he's been doing "great".
I am working at having a life of my own, apart from him in any way. I give up trying to interest him in anything I like. The best I can hope for is her actually works 3 more years and then retires to sleep until he dies. That's his plan.
I understand all of you and I hurt for all of you, too. It feels absolutely hopeless. I can't talk about it people, they cannot understand the incredible ennui that is my DH's life. He doesn't care about anything.
Not getting out of bed, might he be in pain or something else physical is hindering him that he either isn't admitting or doesn't recognize is as much of a hindrance as it is? This is different but my dad for instance has terrible arthritis in his knees and back, he is in a lot of pain walking, just getting up but he isn't a complainer so doesn't tell you how much it hurts every time he walks across the room. His wife for whatever reason can't seem to hear that he is in pain, she complains about her knee all the time but even though he has told her how much pain he is in here and there I guess because he doesn't say that every time he gets up she doesn't think it's that bad (the doctor has told them both knees are bone on bone and recommends double knee replacement). She constantly complains about him spending so much time in his chair, it's one of those recliners so props his legs up, tells him he's lazy and I think she really thinks this, is actually worried about him not being active enough. They just aren't communicating about this well, he isn't explaining it well enough and she isn't hearing him. Might there be something going on your husband either isn't telling anyone including the doctors about or acknowledging himself? Might his medications be contributing? Sometimes over time a build up or body chemistry change can alter the side affects or even efficacy of medications, worth talking to his doctor about.
If no to the above maybe getting his doctor to order PT or finding something that makes him want or have to get up and out would help get him going. Does he get up when people/family visit, is there a hobby he has always enjoyed?
A month ago he decided that he would never leave the house again and told the home health therapists not to come any more. The therapist suggested that we contact hospice, which we did.
My husband has been hospitalized for being dehydrated too and he doesn’t eat much. Hospice is all about letting him do whatever he wants to, although they encourage him to eat and drink. He’s quit taking all but essential meds and the ones he does take are sent to the house by hospice. They come and bathe him and a nurse comes twice a week.
My husband isn’t interested in anything either. He used to be on the computer, read a lot, and now he does nothing. He doesn’t even watch TV when he’s in bed. I feel like the dementia is responsible for that.
I really feel for both of y’all, Liz and JColl7. It gets so lonely and sometimes I feel like I’m living with a stranger.
That said; There were times that she would not get out of bed for up to 3 days at a time other than to go to the bathroom and MAYBE eat. Most days she will reluctantly get up around noon and be up for 8-10 hours. That's as good as it gets it seems.
We did find some approaches that work in Teepa Snow's "It's All in Your Approach". Thank you people here for spreading the news about Teepa Snow!! What this did for Dad and I was teach us how to approach things without trying to 'reason' with her... i.e. if you don't get out of bed, eventually you won't be able to. You have to walk to maintain the strength to stand and walk to the bathroom... THEY DO NOT CARE. Rational thought has left the building and the sooner you quit trying to make those connections between behavior and outcomes, the faster YOU will get sane again. The only way that we are really sucessful is to appeal to EMOTIONAL reasons.. Dad (or I) really need you to help me _________, Dad really needs you to help watch for signs and traffic when he's driving. The NEED to be needed, to have emotional reasons for doing something seem to work more than half the time. But ultimately nothing works all the time, and now the challenge is to move on, and get Dad to opt to do something other than stand over her brooding when she refuses to get up and participate in life.
We have tried appetite stimulants, physciatric stimulants, bribes, lies, physical force, EVERYTHING a family group of 5 could come up with and for the most part there is NOTHING that works very well. Acceptance and watching the person decline due to the unwillingness to get up and see the world, us, etc. is very difficult. I pray a lot.
How old, if it's not a rude question?
When, diagnosed? You say depression has been ruled out; and perhaps there is no definable clinical depression as such; but then again how would you feel in his shoes? What would you want to be up and at 'em for?
No physical problem? Then what's the daily medication for?
Not drinking enough to the point of requiring hospitalisation for dehydration is pretty extreme. Most of us don't really drink enough, but we just get headaches and feel below par and congest our systems. What would you say led to his situation becoming this serious?
If I'm calm he's calm
Goes twice a wk adult day care & naps several hrs after then puzzles etc. Bed around 10 & gets up several times to pee. I have a lazier alarm if he walks out the bdrm. Get at Harbor Freight on sale $20.