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?

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To all of you posting with this frustrating problem. I have been where you are-still there actually.
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.
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Lymie61 Jul 2018
A very good point Prairie but you don't want to just accept changes, especially behavior that is detrimental to their health as inactivity is, without making sure there isn't a medical or emotional reason that can be helped. Inactivity is not only bad for long term heart and vascular health, recent studies have been done that indicate it has a greater affect on dementia then they thought. Not just developing dementia in the future but improving symptoms and memory after diagnosis. On the other hand there can be a fine line I suppose between our desire to keep our loved ones around for as long as possible and their desire to be around or do the work to be around longer...
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I saw this post and thought "somebody is posting about MY DH".

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.

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JColl7 Jul 2018
Your situation sounds like mine. It is like co-existing in the same house. I fix food but end up dining alone most days. Sometimes he will come downstairs to eat. Most days he prefers to stay in bed. Also when company comes, he’ll get dressed and come down, acts like all is well, then the next couple of days, it’s in bed all day. We’ve had visiting nurses, PT & OT. After they leave, it’s back to his normal routine. I can’t make him eat/drink enough. The one positive thing though is that he isn’t cranky or combative. He just wants to stay in bed. He says he’s not in any pain. He’s getting weaker by not using his muscles and has actually fallen a few times (thank goodness he didn’t hurt himself). He refuses to use his cane!!!
I’m glad there is this support group that understands. Thanks for your help.
Yes,I am familiar with that situation,and can appreciate your frustration.At its core, I do believe depression of some sort does exist,whether diagnosed or not.That being said,I tried different approaches,to meet my loved one where they were.Now,do not laugh,but I had some revolutionary results,when I utilized and purchased a set of small finger size cards,that simply asks questions as in," what is your favorite....?"The stack of cards,the size of a pack of cigarettes,proved to be a lifesaver. ( the cards are part of a series called " chat packs"which i stumbled across in a bookstore)Since all my prior attempts ,perhaps like yours,seemed to fail,I took an approach to try to meet my loved one," where he currently was," and spent 30 min a day asking some of the fun based questions Eventually my loved one would ask,so ,"how would you answer that",which stunned me beyond words!!! What I began to hear and learn were answers to ques.I never asked or thought of,and became emotionally educated by the answers,and gave me a peek into "his world"( past & present). What seems so obvious and ordinary became very informative.Such answers as a favorite childhood book,and memories to different simple scenarios,allowed me to reflect on " his world" and how different we were,etc..The answers nost often reflected on,his childhood memories,which I thought I was aware of in full, but in truth,was not!!( if we never ask,we do not know,but only in truth,",assume",and may be surprised at the truth!!) The answers became a fun game of sorts,as when someone is immobile,or chooses to be,the attention is on them,which works in your favor,but the lightness of the questions also serves as a distraction,and may offer,some new tools into how to proceed.... It provided for me an invisible set of instructions,which was a detour from how I usually acted,or what I expected,etc .Often in life ," we listen,but do not hear,and hear,and do not listen"that goes both ways.I do believe you may be a good listener and hearer,( new words) so I am just suggesting some new tools that may resolve,or partially assist, some of the current ,in bed issues.Miraculously my loved one thought I had been miraculously " enlightened" when in truth,my exasperation and ongoing frustration,led me to utilize a tool,I have used frequently as a former school counselor and educator.To this day,the answers,to some light hearted, and innocently insightful questions,gave me a further peek,into a world that for my loved one,that was not always so joyful.Men mask sadness,and often deny its existence,which comes out,as "well this is how it is,and so accept it,or... " Men often do not ask,for help,and Rarely will they say",this is how I feel."I have learned,that what we may think,and what we feel,are 2 very different,and often misunderstood sides of the same coin.Feel vs.think..As in,I may act angry,or become stubborn,when in truth inside,I may feel Alone,not heard,or am frustrated with myself,and my current way of thinking Some food for thought,based on my experiences.
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Infinity Jul 2018
Your are awesome! I'm going to make some cards for my mom! She loves to do dot to dots and easy word searches and she loves adult coloring books. Through the coloring books I have noticed a dramatic decline in her as now she just colors, going out of the lines, unlike how she was a year ago. And I love the hallmark channel and local channels that do not show violence as this upsets her. My hats off to caregivers as it is a very challenging job! Hug to all!
There may be other things at play here. First when it comes to the liquids it's a common problem, as we age and certainly elderly who are infirrmed have a hard time remembering to stay hydrated. A big factor, I think is simply that when someone isn't getting any exercise they aren't thirsty and that's been the reminder to drink most of their lives. We still need as much water daily but we aren't active and our bodies forget to remind us.

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?
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Y’all are both describing my husband! He does remain pretty agreeable and I’m so grateful for that. He has had a series of things—a stroke that left his left side weak, a broken left hip and full hip replacement, and a broken left femur with resulting surgery. Since his surgery last September he has continually grown weaker in spite of 3 two week stints of inpatient rehab and in-home and outpatient rehab the rest of the time. He’s also developed some dementia.

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.
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I already commented on this post--and to see people coming out and talking about the exact same things I am experiencing--well, I can't say I feel BETTER...but I don't feel worse.

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.
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This sounds a lot like my mother, and it's making my Dad depressed and insane. I have spent many weeks with them this year to purge, pack and get them into Assisted Living. They are 83 and 86 right now and Mom has moderate dementia, and the Neuro diagnosed depression, but the Psychiatrist is not so sure. Most of the many ER, Neuro and Geriatric professionals we have seen in the last year attribute almost all of her odd behaviors and self defeating behavior to the dementia. Anti-depressants do not work, we have tried 3.

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.
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JColl7 Jul 2018
This is so similar to my DH’s behavior. He also was on an antidepressant for at least a year and that did not do anything. I have been trying to reason with him regarding the results of him lying in bed, losing his ability to walk, no strength, losing weight and you’re right, that does not work. I will check out the Teepa Snow’s videos you mentioned. (I’m assuming I can find them on YouTube?) Thanks so much for that. I’m new to this site and already have learned a lot.
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Much older man diagnosed with mid-stage dementia...

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?
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JColl7 Jul 2018
He is 82 years old. He had to stop driving about 2 years ago because he was no longer a safe driver. I think having to give up that independence would depress the average driver. However he still did things and I told him I would drive him anywhere he wanted to go. His dementia has progressed over the past year and he prefers to sleep the day away. He used to sleep until 3pm and then get out of bed, but most days now, he’ll stay in bed all day and night. What led to the dehydration? It’s hard to eat and drink enough when you’re sleeping the day away.
Yes, watch Teepa Snow’s youtube videos or "Understanding Vascular Dementia” workshop done by Teepa. It is available at Pines of Sarasota website. An amazing source of knowledge. It is not that he doesn’t care- he can’t care. Strongly recommend Teepa’s videos, it helped us a lot.
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YsLadyMN Jul 2018
I found a lot of suggestions useful in the Teepa video "It's All in Your Approach". I'm answering, as this sounds like my mother!! All day in bed, no interest in ANYTHING.
Hum -- a very interesting thread. I am sort of in the same boat but my DH has peripheral neuropathy and can no longer walk, stand, transfer. We were doing all of that (he is 250 lbs and 6'5") with a Hoyer lift. He has an electric wheel chair but preferred to sit in his recliner all day and watch old tv shows on his phone (not tv or tablet). No conversation. Not interested in anything to do with life -- i.e. home, outings, me. Wanted to eat dinner at 3 PM. In June in hospital for staph infection in knee then to rehab. Did not contribute to his PT so they wouldn't keep him after the 21 day period. Now won't get out of bed -- says hurts too much. Not so sure about that but --
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.
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