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?
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.
2. Look for an answer in a big life change or trauma which happened in the weeks or months before it began. Im thinking retirement, loss of friend, death of loved one. And then determine if he needs to get into a grief or loss group to deal with these issues.
3. Did he have interests or hobbies before the onset of these problems? When I look at many men after they retire, they no longer know what to do with themselves because all they knew was working and supporting their family.
4. My only parallel is students in my classes who were immobilized to do any assignment they had an inkling they would not do well on it. This usually happened with a new skill. They would rather get a zero than get a low grade, as if that would prove how inadequate they were.
So, might he have a fear that he might not be successful at whatever is at hand?
5. And I'm certainly NOT a doctor, but it sure sounds like a form of depresion to me. Was that a doctor who said he was not depressed? I'd get a second opinion, and if they also say it's not depression, then expect them to tell you what is going on.
I wish everyone here the best! While I am not fond of my father's caregiving agency. I am so grateful that he does have a caregiver, as it allows me to escape for a few hours most days.
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.
When he gets up he struggles to walk many days. I have no insurance and no support. His mom is not in the best of health. His dad has passed. No siblings. On the 2nd I took him out to eat. (I try to at least go on Friday nights and Saturday evening to get him out of the house. He will not go in a store and sits in the car no matter how hot or if raining). Anyways when he passed out right before that he was actually having a conversation with me and another person after he went to the bathroom. He then got sick and then passed out. Called 911 he was admitted till the 4th. (Restaurant workers later told me he had made a mess in the bathroom) the Nurse's noticed the smell of the mess for he didn’t clean his self. Come to find out he wasn’t even wearing underwear.
Said he doesn’t have any. In which that’s not true. But a mother story. The whole time he acted like his normal self before he had multi strokes on the brain and Vascular dementia. Before he was admitted on the 2nd he does nothing. Not even take a shower. Yes he has underwear. I find them under the bed on his side and clothes in general as well as nasty toilet paper.
So we have been back to the restaurant since then and the last 2 times, I thought was okay until Saturday evening. One of the workers called me from the table and said “something needs to be done, the last 2 times the bathroom has been awful. I apologize and so I guess that’s that and will not take him there . It’s embarrassing, and not fair to them to clean up after him like that. I can’t argue with them cause I have been through and still going through the same at home. I got a cheap shower curtain and had hung it behind the commode and one side on the sink cabinet as well as along the Tub. Yes it’s that bad plus some . All over the floor under the lid and ring as well as the inside of the door on floor and sometimes on the hand towel. Yes on his pants on also.
My 83 year dad was like that when I first got him almost 2 years ago. I started him on B12 vitamins 3000 mg & Muscle building Protein drinks since he wouldn’t eat or wanted to sleep most of the day. After couple of weeks he got his strength, so took him to doctor. Dad had an infection & treated with antibiotics.
Today all his doctors are amazed that dad is more alert , doesn’t sleep all day, and loves to watch movies.
To motivate my dad I try to do things his likes ; we go out to lunch, visits grandsons, church luncheons & more.
Hope this helps !
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.
I have had caregivers and sons who help. I can no longer physically care for him and my son who is very strong cannot lift him anymore. After this hospital stay we discussed and moved him into a board and care. I go almost daily , help with exercises and try to be encouraging.
Feelings -- it was lonely, sad, and horribly physically demanding as well as life limiting for me when he was at home. Now it is lonely and sad. Guilt is huge. But here is the thing -- is it my responsibility to make him do what he must do to at least be able to sit in the wheelchair -- to better his quality of life??? He yells at me if try to have him do anything that is hard and won't do things the way the OT or PT have instructed. He will weaken more due to the disease but he could still, with help be out of bed.
He is on anti depressants but don't really think that helps much. He is not interested in anything and is, of course, loosing some memory. We will not be able to keep him in this facility for too long but right now it is a break for all of us -- but sooooo sad.
Non of us signed up for this, it is so very hard physically and emotionally.
I guess that really didn't offer any helpful suggestions except to say you are not alone. Hugs.
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.
https://www.youtube.com/watch?v=bvXKH6UoROs
http://alzheimer.ca/en/Home/Living-with-dementia/Understanding-behaviour/Apathy
Not wanting to get out of bed as well as not eating sounds like signs of depression to me in my non-medical opinion. When my Mom (who has vascular dementia) doesn't want to leave her bed I know she is depressed just by looking at her.
I never nag my Mom because I know if I do that I will get negative results. Instead I give her a hug and ask her to talk to me and let me know what she is feeling. Or I think of something fun to do (like playing cards or singing a song) that will change her attitude for the better. Sometimes it's a little thing like playing music she likes as that makes her feel better. Music is very therapeutic.
On the days when my Mom really doesn't feel good I will make her a smoothie (using almond milk, fresh spinach, kale, banana, etc.) and bring it to her bedroom and walk out.
My last suggestion is to watch Teepa Snow youtube video's... They helped me a lot in dealing with my Mom.
Don't know if this helps or not.
He won't shower -- "I'm too weak, or too dizzy or feel off..."
He is getting forgetful about taking his meds which I now have to carefully manage. He has stopped helping with the farm work and rarely comes out of the house.
His days are spent napping with his CPAP. We've had many doctors work with him and OT and PT too. He can walk around the large VA facility with no problem right now to get to his appointments. However, as soon as we get home...he is in bed.
He will get up to ask for supper or for me to make him something to eat for lunch and lately I have been directing him to make his own lunch.
This morning I awakened at 3AM with the realization that he may not ever want to do any more than what he is doing right now. This may be it.
Since he won't shower and won't let me help him shower, I am departing from our bedroom. I told him I won't sleep in the same room with him if he won't bath or shower.
He does have Major Depressive Disorder along with Vascular Dementia so I am trying very hard to figure out what may motivate him. He was told by doctors to start moving or he would just get worse.
And he doesn't care.
His prostrate issues with leakage are much worse when he doesn't move around. But he is sure that he can't go anywhere because he leaks and...he doesn't want to drink water because he ...may leak...so there is that too.
That is frustrating for me. However since he isn't a fall risk...yet... I have decided that I will not sit in the house waiting for him to get up and seeing what he wants.
My next step is to see when I can get some in home care for him. I can't bath him, but bringing in a nurse may help??
JColl7, I can't imagine your husband would stay in bed all day unless there is some sort of depression going on. Even a very mild form of it. My MIL was diagnosed with AL this spring and she insists on sitting in her chair and napping all day and says she is not depressed. However, she rarely wants visitors and doesn't leave her apartment unless her Helping Hands person insists on going for groceries. The doctors say MIL has very mild depression but no meds for it.
I'm sorry you are going through this. It is not easy at all. I hope you find some time for yourself.
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?
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.
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?
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.