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Is there a way to help him understand this is permanent? (he is 86, diagnosed with ALZ 8 years ago, I am 20 years younger, we have been married 35 years) He is physically functional, can still bathroom, (though sometimes incontinent) shave, shower himself, but when at home, he frequently did not remember how to get from one room to the other, and sometimes didn't remember who I was, asked me to call his wife to come get him to take him home. I work from home, but have to take 2 - 3 business trips per year. I have used respite care before when I traveled for business and he didnt like at first, but got used to it and when I bring him home, he usually says something like, "they were nice to me, I'd go back there!" This MC facility is less than a year old, he has his own room, I decorated it like our room at home, and they are very nice to him, seems to be a very caring place. But for now, it will be permanent, and I don't know how long I can keep telling him I'm traveling, he keeps asking when he can go home. At the MC facility, they told me not to visit for 2 weeks to a month. I was so worried about him, I went to see him after the first week and have been going twice a week. He seems lucid sometimes, calmer and more accepting in the daytime, but frequently completely out of control with questions, being irrational at night when sundowners sets it. (Why did you do this me, when can I go home, I dont belong here, etc) and I worry so much that Ive made the right decision. He retired over 20 years ago and Ive done everything thing for him, waited on him hand and foot, (My choice, Im not complaining about that) but he is SO dependent on me now. How can I tell him this is permanent? I feel so sad for him, I know he is lonely. His friends will be able to visit him there, the MC facility told me they think its ok now for him to have visitors; His 3 adult children, all in their 60's so they are not kids, are not much help, they all live out of state, and his oldest daughter has not spoken to me in 6 years. She has never once asked me how her father is doing, his condition, etc. I guess she learns about him through the other kids because I do talk to them regularly. But I also send updates to his children by email, primarily for her benefit. I retired four years ago, but felt that I could not sustain keeping him at home much longer without losing my mind as well, so I went back to work to afford his memory care. This whole situation is killing me with sadness and worry, I really just don't know what to do.

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My mother has been saying the same exact sentences:
"Where are you going?" I say "I have stuff to do, shopping, errands, etc."
"Well, what will I do?" I say: "Watch TV, take a nap, go down and see what they are doing in the lunchroom".
"When will you be back? I always say, "tomorrow, I will be back tomorrow" (I go every other day currently. I started everyday for three months). If she is down in the lunch room, I just check her room & supplies and leave). "See you, Mom, I got to go, I'll be back tomorrow".

I have noticed that although the sentences are exactly the same, she doesn't seem to be as anxious while she is repeating them. Just a fleeting moment of concern, then she walks me to the door, says goodbye and waves through the glass panel.

Three weeks is not a long time to adjust.
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You just tell him. He will protest and he will cry and he will become angry and he will mourn and argue and battle. Is that not normal? Dementia takes some of the "stops" off our behavior; sometimes it is all let to "hang out". So you will have to see his honest reaction of grieving. Is that not what any of us would do? There is honestly no way to avoid the roadblock of pain, get around it. There are times in life that are sad beyond description. How does the doctor tell the patient that he or she has cancer and will not live? He does it as gently as he can. But there is no way to make that news anything other than loss and devastation. You will feel guilty, you will feel helpless, your will feel tormented, and right now those feelings make you feel that your life is altered permanently and there will not be happiness again. But that is because this is all the acute stage. You will feel a bit relieved by the truth, I am thinking. The truth is that you are dreadfully sorry, but that you cannot care for this person you so love at home anymore, and that you will do all you can to help. I have seen this happen over and over again, and people adapt and adjust to different degrees according to who they are. Some get new "girlfriends" or "boyfriends" they care about in care, and even that while a relief on the spouse, can be very painful. I so remember "Hulda" telling her husband about her "new boyfriend". Life is change. At the end of life there is some wisdom but a whole truckload of loss. And it is worth grieving over, worth crying and shouting over. Accept that you cannot make this pretty, easy or pain- free. My heart so goes out to you. I hope you will update us.
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jacobsonbob Jun 2019
You are absolutely right. A few years ago my girlfriend's sister-in-law got the news that she has Creutzfeldt-Jakob disease (CJD), essentially a human form of "mad cow" disease, and was told all she could do is to "get her papers in order" while she still has the mental capacity to do so. Her mental status changed noticeably from week to week and she died just a few months later. This has to be among the most devastating news one can get. The only "good" news associated with it is that it apparently doesn't cause pain and the short life expectancy limits the time one has to experience the disconcerting mental and physical symptoms.
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Based on what you say, you tell him you are going on a business trip. When he starts up again, and he will, tell him you are going on the trip - now. He won't remember that he was left there before. Tell him you didn't go yet - he won't have a sense of timing. His mind is gone, he is gone. Now take care of yourself - you deserve it. Live your life - he has lived his. And do stay away for a while - perhaps call or write but don't go in person - not yet.
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Dear lady: I am praying for you. This, too, shall pass. Big ((( ))) Hugs.
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I beg to differ with 1nephew. After 8 years into Alzheimer’s, he should be in stage 5-6. At this point nothing is really understood or retained. “Therapeutic fibs” are a kind way to go as you are not speaking to someone who is rational. They are NOT able to process feelings at that late stage and need constant repetitive answers to their incessant questions.
Why upset someone so far mentally gone and then upset them again (and again) when you answer their questions truthfully? Let them have some hope left (even though there is none). I would tell mother (who adored the doctor-any doctor), that he wanted to check her physically and make sure she was well enough and when it was time, he’d discharge her. She “bought it”. What harm did that do? She was totally confused. She didn’t know who I was but recognized my face, didn’t know where she was, what time it was, etc. I’m sure not going to burden her with “Mother, you are too far gone mentally from the Alzheimer’s and are way too physically heavy for me to bring you home.” That’s just mean.

I would have a meeting with the facility doctor to ask about meds to stabilize the severe mood swings at evening time. Worked well for my mom.

Good luck. You are doing and have done a wonderful job. I agree, check out getting financial assistance to help pay for his care. Visit your local senior center for lots of info and referrals.
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Seems you have done beautifully. One of the cruel realities is nothing you do will feel *good.* You need support to handle this next milestone; it is so difficult to navigate, and professional input from someone who knows or has closely observed him may help you to find what are the best ways, for now, given his/your circumstances.
Some people who have survived this process say just put them off/change the subject/deflect/lie, etc. I think this can be cruel. As someone is losing their grip on reality as it is, the ones they most trust are gaslighting them! I think grief and suffering are our rights as human beings; dementia does not change that. It's excrutiating to have to bear their grief... and it so readily becomes our guilt.

That said, how you do it is critical I think. If he is constantly asking, he may well already know, but doesn't know how to understand it, and or needs you to validate that he will live at MC going forward. He may or may not need explanations. I found over time with my mother that there were words & ideas that I would use repeatedly and they became reassuring: "This is your bed/ these are your lavendar sheets/ I will sleep at my apartment/ you don't need to go anywhere/ this is the best we can manage right now/ let's try and make the best of it/ I know you hate it/ aren't happy/ would you like me to bring chocolate next time I come?/ etc.

(If someone wanted me to "make the best of it" I'd get furious, but it was one of my mother's favorite refrains.)

My mother and I did not speak a language of feelings. This did not change. It was thru what she verbalized with others that I understood how she was coping.
I wonder whether you and your beloved husband are able to be sad together...

Finally, I encourage you and others to do all you can to try and relieve (his) discomfort/ anxiety/ restlessness/ agitation. If the staff has designed strategies tailored to your husband to minimize the inevitabilities of sundowning and they have not worked, enlist his medical providers. They've been treating this for decades. Many people have found cannabis ingestables e.g. CBD gummies, very helpful for dementia related discomfort. There is no point in suffering-for anyone!

You are not alone.
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anonymous272157 Jul 2019
Great ideas.  I also told my aunt, this is your bed, and I have brought the comforter you made.  She accepted it.
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"...I went back to work to afford his memory care. This whole situation is killing me with sadness and worry, I really just don't know what to do."

Have you explored any financial options (see Elder Care attorney if possible)? VA benefits? Medicaid? If you enjoy your job and/or are not eligible for any other benefits, working can offset the cost, but it would be great if you could find some financial help.

No cure for the sadness part really - time should soften it a little. Worry - for him? the "kids"? yourself? If he is in a safe place, you shouldn't need to worry really. The kids? It isn't like they are toddlers or teens. Keep them informed, that's about all you need to do. Assuming you have POA of some kind, so you can manage what needs to be done, are there alternate plans in place, in the even that you cannot manage his finances and affairs? It is probably too late to set up alternate POA, but it is a discussion you should have with the kiddos who DO talk to you. If he has any assets and something happens to you, without someone to step in the state will appoint a guardian and all assets are likely to disappear!
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"He seems lucid sometimes, calmer and more accepting in the daytime, but frequently completely out of control with questions, being irrational at night when sundowners sets it."

Has anyone suggested an anti-anxiety med? They ordered this for mom when we moved her. It was only used for the initial move in. However, when she got a UTI, we had to get it again - she normally is quiet, reads her paper, magazines, skims through (over and over!) sale catalogs, clipping out coupons or something that she thinks she needs... but with the UTI she was out of control, insisting she had to go home, had guests coming, tried every door, setting off the alarms, etc.

It doesn't have to be all the time or even very strong. Mom gets the minimal dose, only when needed. It doesn't take time to build up in the system, usually calms her in about 15 minutes, give or take a few... The one we've had success with is Lorazepam, something like .5mg (we only needed it for about 1 week until the antibiotics took care of the UTI. In his case, it might need to be everyday, at least for a while, given around the time he might start these behaviors.)

It doesn't leave them doped up, just takes the "edge" off. There are other ones available and it certainly can't hurt to try. Doc argued with me in keeping the order in place, saying it is a fall risk, but the only tumbles she had was during the first year, well before giving her any of this medication for the UTI and not during the initial move. It is such a small dose, I am not concerned with it (I am not a big fan of medication, but in this case, keeping her calm with a very minimal fall risk vs ranting and raving every night, it seemed like the lesser of two evils!)

To avoid those times, don't visit then - keep visits perhaps in the morning (unless/until some medication helps.) Avoid the sundowning hours!
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Depending on his level of memory loss, it is probably best to not tell him.

The suggested therapeutic fib, hard as it is to do (ingrained in us from childhood to tell the truth!) would be better to work on. Clearly, although he may seem "lucid" at times, his ability to remember is failing, so is it easier to tell him maybe tomorrow/this weekend/next week, etc over and over, or to explain over and over why he must stay?

Either way you are going to have to repeat yourself, but sometimes it is best to leave the option open - saying tomorrow, or next week leaves the door "open" for him, it gives him some hope, whereas telling him forever doesn't. He likely won't take the truth well AND won't remember either response, so you'll have to repeat over and over in either case. Leaving the "door" open is a little kinder and less final than slamming it shut. It may be harder to fib, but it will be less painful emotionally for both of you to consider leaving that door open (I am NOT suggesting you consider taking him through the door, just telling him later!)

About 9 months after moving mom to MC she started asking about her mother (can I drop her off there, call her, have I seen/heard from her, etc.) Rather than having to tell her/upset her over and over and over again that her mother is dead (about 40 years ago!), I have to think quick and respond with a hopeful answer (maybe tomorrow, she's gone to FL for the winter, etc.) She also spent that 9 months hounding my YB to take her back to the condo. After the 9m, she forgot the condo and would want to go back to the house we lived in prior to that! Who knows what she considers "home" now (I don't ask!!!)
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Haha, I love it.  I told my aunt it was a hotel.  She was still too smart to fall for it, but on my 2nd visit I told her I just couldn't care for her anymore at home, but I'd visit a lot. She said 'I know' - she'd been protecting me I guess. But she had Vascular Dementia, and sometimes recovered some of her ability to think after an episode of TIAs.  You've done well, and you probably have a feeling for what to say or not say.  Best wishes, and be kind to yourself.  You have not failed.  We grieve at each loss in their ability, and in their placement there is some loss.
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Zdarov Jun 2019
grannie, I think you hit on a good point and I have used the ‘hotel’ word too... you’re in a nice a bed and people take care of you. I haven’t stayed in a hotel that does exactly that :) but comfort wise it’s a good description.
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You knew what to do, and you did it. Now you feel guilty, and you don't need to. You did the right thing. Now you have to try to make peace with yourself. If he is safe and cared for, he is ok. And he still has you!

I don't think you tell him that this is permanent. He's in Memory Care for a reason. Can you get a sense of whether or not he knows where he is?

Just keep visiting and keep yourself busy and healthy.
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If he is 8 years into an Alzheimer's diagnosis, soon enough he won't know he is not home.  I don't think you have to mention it is permanent.  We used to tell my Mom, until her foot was better; that worked for awhile.  Perhaps focus on the meal time or entertainment time while visiting as they seem to be in the moment  anyway at that time. If you leave before he is transferred back to his room from the dining room, maybe it won't come up.  I have a 15 year difference in age as well with my husband with Alz,, St. 4 cancer, and heart disease, but it doesn't mean we have to give up our health to care for them if we have other options.  I'm glad you went back to work, and hope you can find other ways to spend time enjoying yourself.  I do that every chance I get.
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My aunt was told "When the Doctor says you are strong enough or another excuse". Repeat as needed. No need to tell him it is forever.
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jacobsonbob Jun 2019
This is basically what my sister and I said to our mother when she asked how long before she could leave the nursing home: "when you are stronger". She was getting some physical therapy but gave up on it, and then soon after becoming bedridden (which she has now been for 5 1/2 years), she quit asking this question.
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This is so very common.
You are not alone.
In my experience, the best results are just to visit him regularly during meals and activities. During those times, the mind is on the moment .

Hope this is helpful.
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You have done the right thing, and the only thing. There may never come the day when he says to you "I am happier here than I was at home". Gently explain to him that this is now the way it must be, that he does have these problems that you cannot take care of or change. He may not be happy about it. There is no way to make this a happy positive event for him. Accept that he may be angry and he may grieve, and that these things may come and go. I am going through much the same thing at this point with my brother in assisted living. Some days I feel he knows that this is best for him, and he speaks of "Taco Tuesday" and what is happening around the place. Others he speaks of going home in the fall. And I never know which attitude will prevail on any given day. There just isn't a way to make this easy, pretty, good, positive. It is a "do the best you can " and "This is a good day" or "This is a bad day". The very best to you. At the assisted living where my bro is, when I was talking to one of the very nice people who work there, I was told that guilt is what they deal with all the time. That they see the suffering of families every single day, and it breaks their hearts. Best to you. And remember, the better your heart, the more you suffer. Those who don't care? Well, they don't care. Get help of a license social worker who deals with these end of life situational issues so that you can comb through your feelings, and get the beginnings of working toward acceptance of something you never wanted and cannot change. PLEASE be good to yourself.
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1nephew Jun 2019
What a beautiful reply. I agree wholeheartedly, with all you said!
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This post was extremely timely for me. I'm getting ready to move my mother to memory care. I'm fortunate that we have a wonderful place with staff that I trust. My dad spent nine months there before he passed away. I'm worried about mom because she is much farther down the dementia road than he was. But she desperately needs medication management that I can't provide. I keep reminding myself that the staff are trained to handle people like her and I already know many of them. They loved my dad, so I know they will take good care of her. It's still so hard, though. Reading all these responses has been helpful for me, too.
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You have made a very responsible and correct decision. You are doing what is best for both of you. Yes, you have to consider yourself as well as your husband. You’re fortunate to be able to return to work at your age and you’re doing it to support your husband and see that he is well cared for. I only have one suggestion, visit when he is at his best which may not include evening visits. Evening is a difficult time for those with Alzheimer’s and professionals can better alleviate your husband’s fears.
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Do not beat yourself up; his best interest is your priority and that is very clear! Time generally takes care of most things in my experience; why not say this is home
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I'm sorry for what you are going through. I do object to you saying his kids are in their 60s and can't help. I daresay most of us on this site are in our 60s and caring for someone. Involve them - they can help!
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anonymous912123 Jun 2019
My husband's children were in their 50's when he died, they could have helped, but they refused to. When he died all of a sudden they were right there standing in line for his money.
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I have nothing sage to add. I think you’ve been amazing, and have done the right thing for him and you. The RIGHT and best thing! I just wanted to show my support. I like the work trip thing, good thinking. God bless him and you.
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My mom’s been in MC for 3 months. She’s very mobile, like your husband. Since her short term memory is extremely short, when she asks what she’s doing there, I tell her she’s getting physical therapy for her balance (she’s developing balance issues). She may ask this question 5-20 times during my visits. When the sundowners kicks in and she gets hysterical and wants to go home, I tell her I will pick her up in the morning. That settles her somewhat. By the time she has settled she has completely forgotten everything. I just keep repeating my answers as many times as needed. It’s called “therapeutic lying,” and it is done to calm and soothe agitation. It works for my mom. Best of luck to you. :)
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This is the best situation for you both--please believe that! You have probably heard that when a person with dementia says "I want to go home, when will I go home?" they really are expressing a need for security or familiarity and the warmth they had 'at home,' and don't necessarily need the physical place that was home. So the more you and the staff can help him feel at home, the easier it should become for him. When I became a family caregiver I took many workshops and webinars on dementia and dementia care. In my opinion Teepa Snow is amazing and I'd suggest that you google her and look at her webinars on sundowning, etc. The best thing you can do is visit your husband as much as you can, make sure the memory home knows that you are paying attention and will be involved in your husband's life and his care and want a high quality of life for him.
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I can so sympathize with what you're going through. Two years ago I had to place my own DH into Memory Care, since he had FTD and tried (quite suddenly) one day to commit suicide. It was for the safety of both of us that I had to find a facility for him. (Prior to this, I had to quit work because of his wandering. . . ) It nearly killed me to place him in any kind of facility and there was plenty of guilt that went along with it, even though it was totally the correct thing that had to be done. By the way, he SHARED a small room with another person, and this cost over $8K a month. I too had the heart-wrenching questions about 'why am I here?' and 'when can I go home?' He was completely physically fit - except for the FTD - so he got to be a challenge for the staff since he was so mobile (I.e., alarmed doors never phased him as he would try to leave the facility on his own. He even somehow managed to cut off his wander guard bracelet a couple of times too.) The whole thing can indeed consume you with sadness and worry. While in the facility, I visited every single day and was glad I did. As hard as it was to see this intelligent person become so different from the person he used to be, I had to essentially become his advocate, as there was no one else.
He was there only four months and his FTD was so aggressive that he passed in October. We were 15 years apart so what I thought what was going to be our 'golden years' has now become a time that I'm alone and never expected to be at least not now. The best thing you can do is to stay involved with what's going on with him day to day and to know that you have done the best you can for him. Though I know in your heart it's an extreme pain that no one else can possibly know.
Best of luck to you. This is one of life's most awful paths that some of us are forced onto.
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Your story mirrors mine in two areas: I am younger; husband has 3 kids.

You did the right thing because you lack family support. It is sad that his children do not want to be involved. You do what you need to do. Nobody likes to live anywhere but home.

But one question: Can you really afford MC with your salary? It is usually $10-15k a month.
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Harpcat Jun 2019
That sounds a tad high in our state it’s only about $6000. But regardless, she must be able to orwouldnt have done it. Perhaps she’s also got a LTC policy on him or funds in an IRA plus his SSI. I wouldn’t question it. She’s worked it out and has no choice.
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Don't say anything right now. Eventually, You and a Kind Hearted Staff member, A Doctor Perhaps, Can Sit with him and Explain everything when the Time is right. Give HIM a chance to Adjust there.
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It sounds like this is for the best, for both of you. He may not really be able to understand that this is permanent - and does he really need to? Perhaps you should follow the advice of the staff and not visit for a bit so he gets more used to the facility, for his own good. If he gets more used to the place and gets properly settled, maybe he'll be happier and you'll be able to stop feeling so guilty.

You have given him a long time as a caregiver and that is a TOUGH job, no matter how much you love the person.
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If he has been formally diagnosed, his cognitive capacities are already unable to contain the sustained consequences of his situation, so permanent-temporary-here-there just doesn’t mean to him what you may be thinking it means.
He has not been in his present surroundings for very long, and you may begin to notice fewer unhappy comments as he adjusts to seeing familiar faces among his caregivers, but even as that happens, he may continue to make breakthrough comments about his past.
If he admits to liking his respite experiences it would seem that you've found a pleasant and comfortable placement that at least at some level he accepts.
He may also begin to make friends among other residents, which should also help him feel more grounded.
You fell in love with him 35 years ago, you’ve seen him through his diagnosis, and you’re striving to bring him comfort and peace in his infirmity.
We all suffer when called upon to make these decisions on behalf of people whom we love.
Console yourself with the knowledge that you are still giving him from your heart, what your mind knows is best for him.
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IMO you have done the right thing, he is where he needs to be. Don't beat yourself over the head about having to place him. Most of we caretakers are not clinically trained and have just been treading water. I would sit down with him and explain that you want to have him properly cared for and that you cannot do that. Get him involved with the activities, help him to settle in to his new surroundings. Continuing to give him false hope will just make this transition more difficult. I wish you the best!
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