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Late last May my husband entered memory care in a well-run facility. I'd been caring for him at home (with caregiver help) for five years as his dementia and mobility worsened. Then Covid struck and further damaged his strength and cognition. He became too weak and confused for me to physically manage his care at home (too many falls, unable to stand or walk more than a couple of steps, severe incontinence, etc.). His first month in the new facility, he seemed blissful, often telling me what a wonderful place it was and how happy he was there. My last two visits, he started asking when he would be coming home, that he does not like being "stuck" in this place. I say things like "you need to be here to be getting stronger," which he seemed to understand at first. Do forum members have experience with this shift from happy to restless and discontent? I felt so lucky that he seemed to love it at first, and it pains me that he is unhappy. There is no way he can come home, but I am feeling sad and more guilty than I did at first. I wonder if anyone has useful phrases or conversations to divert the attention from his unhappiness at my leaving him there?


Thanks to everyone who has chimed in on my various postings. I so appreciate this forum.

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I know this must seem impossible. I am living with my mom who has dementia and although I know her brain does not work in some part of my head but the other part just can't grasp it. It would be 1000 times worse if it was my husband. There is something sacred about the relationship that makes you feel awful not telling him the whole truth. Unfortunately, the whole truth will not make him happy by any stretch of the imagination so you are in a catch 22. I've found that it is easier to tell my mom a truth even if it is not really what she is looking for. For example, she just asked me when she is going home. The truth is she is not. She will never return to her home. Instead of saying that or something like that, I said, well, you have a dental appointment coming up (true) so we can't make any arrangements until after that. Later, it will be another dr. appt, a party, a short trip, my husband's work schedule, etc. I like this method because when I say that, she asks questions about the dental appt and we are effectively off the subject of her going home without me having to lie to her or tell her truth that will distress her. in the past, I told her she cannot go home because she can no longer live alone but since she does not think anything is wrong, she cannot believe that could be true and she does not remember any previous conversations about Alzheimer's or leaving her home.

Unfortunately, we can make lots of suggestions but only you know how to handle your particular circumstance and be able to live with yourself. I have a friend whose dad has dementia. Her mother insists on telling him the whole truth and they have experienced some pretty bad reactions. They have been married for 62 years and she says "he trusts me and I cannot lie to him". I wouldn't even try to make her change but if I did, I would say, you are not lying to him in the true sense of the word because, number 1, you are not dealing with your husband of 62 years, you are dealing with a mind that does not work properly; and number 2, it is better for his health and (potentially) yours if you keep him calm and happy. I say all of this to say that I understand that this is extremely hard and each day brings a new challenge but I want to encourage you that you have made the right decision and are doing right by him even when you are not entirely truthful about his circumstances. The unhappy truth is, he will never "accept" it because he cannot understand it.
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“I say things like "you need to be here to be getting stronger," which he seemed to understand at first. Do forum members have experience with this shift from happy to restless and discontent?”

What you said to him didn’t explain that it’s permanent. You gave him false hope. He believed, he’ll be able to get out one day when he’s stronger. It’s not surprising that now, a lot of time has passed, and he wants to know when he’ll go home.

I know some people use “therapeutic lies”. My wish would be, “Tell it to me straight. Don’t lie to me.”

Some years ago, I was in hospital. I was surprised a family member (nearby) didn’t visit. On the phone, he told me some false promise. Now I know it was just to keep me quiet. My opinion of this family member is now lower than low.

In the context of NH, I would tell someone honestly, “You’re here permanently.” They have a right to know. And the person who put them there, should face up to it.
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Poor both of you. Not surprised your hubby feels the way he does. The 'honeymoon" period has worn off; he may realize the situation he is in.
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I told my husband the truth. When he used to ask why he’s in memory
care.. I used tell him because I couldn’t take good care of him at home. Here he was safe … professionals’ eyes on him 24/7 .. meds and health monitored everyday by nurse… etc etc
you can never replicate the safe care at home no matter how much help you have… there are 3 shifts /day
nurse/doctor available … try taking loved one with dementia to doctor’s office with all their issues.
so I always told him truth … and I think he understood and hope he forgave me… because I couldn’t get over the guilt either.. that just proves you’re a good person.
visit every day or as often as you can
bring snacks … take him outings if he’s able… out dinner .. parks… picnics …
here he was surrounded with people
physios activities … at home there’s
just him you and caregiver
you’re doing best for his health and safety …as well as yours.
Best Luck
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verystressedout Jul 2023
“I told my husband the truth.”

Good! The person deserves to know!
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Your experience is not unusual.
As he is deemed " appropriate for memory care unit", this says that he is greatly cognitively impaired and, as such he will not remember having been told or remember asking the questions about " going home". Hence the repetition..
This can be extremely challenging to family as you are experiencing ( so don't feel guilty about your feelings).
Keep visits short, redirect conversation to something positive and appropriate when he starts the
" going home drill" . If he doesn't or cannot follow the redirection, tell him you love him, he is there for his safety, and you will see him again soon. Then leave. Do not linger nor allow him to " control" you with guilt producing verbals such as not liking it etc. You can also try having a specific planned activity ready when you do go and plan ahead to fill the visit time ( 15-30 min ) with your agenda for a positive visit.
Get counseling for yourself via pastor, chaplain, or other qualified professional to support your emotional, spiritual health.
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AHWilson: You could perhaps state that he is at the memory care facility per his physician's orders. Then distract him by offering some of his favorite snack foods.
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Get a Geriatric Psychiatrist who can write prescriptions order a brain scan. He can also communicate with you and your husband. Happiness is not in your job description, but safety and compassionate care are.

Please seek out a support group for yourself.
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Way2tired Jul 2023
The brain scan can be skipped at this level of dementia . It won’t change med treatment for the behaviors .
The scan itself is upsetting to go through at this stage .
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My hubby always said he wanted to go home....even when he was home. Sadly they don't really know where they are, so just comfort him and tell him you love him and offer him a goodie or turn on the tv or play a game or change the conversation. and PLEASE, do not feel guilty. You are not at fault. You seem to be a lovely soulful person. Do tell him often how much you love him and how much he meant to you and that it was a wonderful life with him and that you are lucky to have had him as a husband. When he's gone you will regret not having done that.
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What happened to the responder's ID?
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southernwave Jul 2023
Edit button is also missing
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You may find that this is a stage, and as the dementia progresses, he will forget that he ever lived anywhere else! I found that before I got used to one dementia stage, my DH was on to the next stage. I would just say, "I'll talk to the doctor about it", or change the subject. Dementia is a hard battle for you as the caregiver - I'm praying that God will give you wisdom and peace.
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Guilt infers fault, and you didn't cause his problems and can't fix them, and trying to care ongoing could kill you. Then what for him without even your visits.

I only can hope that he will change back to loving it. You can't predict where his mind will take him. Use the right G-word because what you tell yourself in your own mind is so important. You are Grieving, and that is g-word enough. This is worth the grieving, for it is terribly sad and heartbreaking.

I hope things get better for him. Ask at the facility and I bet you will hear he is OK after you leave with his own routine. My best out to you.
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I don't know the solution or what will help, but I feel for you, feel for both of you.

I will get the "I want to go home" speech this week too.
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Let dh know that he's living where he is under doctors orders. If and when the doctor says he's improved to the point he can leave, then you'll discuss it. Until then, he has to stay put. Then distract him with a snack or a walk/ ride around the grounds.

Please don't be swayed by posters here Trying to guilt you in any way. Memory Care Assisted Living is often the best case scenario for elders suffering with dementia to keep them SAFE and well cared for. We're not The Bad Guys, nor is the MC facility, but the miserable disease itself.

Wishing you the best of luck with all of this.
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You’ve received good answers. Just wanted to say that I understand that you are sad. I would be sad too.

Wishing you and your husband peace during this difficult time in your lives.

Please know that you made the right decision to place him. He is safe and that is what is most important.
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I read some suggestions on here to say something like the house is getting painted or remodeled and you’ll let him know when it’s ready.
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Ah, the "honeymoon" phase is over and he realizes where he is at .

At this point all you can do is continue to "lie" and hope he doesn't keep bringing this up.
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Lovemom1941 Jul 2023
It’s not really a lie to say if his doctor releases him, he can go home. This is fact. The doctor isn’t likely to release him under the circumstances but it’s not necessary to add that in.
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A few things to try:

You need to stay until Doctor ABC believes you can go home.
COVID is still making everyone sick and you're safer here.
Our home is getting [insert something here] and we'll re-talk about it when [something] is finished.
When it is safe.

If he's made friends:

If you leave now, [person 1 and/or person 2] will miss your company. We'll visit this again later.

Or even:

We can't move you today because it is a holiday. We'll try again some other time.

and change the subject!
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