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In 11 days my husband will go to memory care. A few days after that, he'll have back surgery and then rehab/recovery back in MC. He's so focused on the surgery helping him regain leg strength, that's all he's focused on. We've bought some furniture for his room and he appears to understand that it's permanent, but then he'll ask me how long he'll be there. Third time now. Stupid me.... I KNOW I'm not supposed to "explain" the reality to him but when he seems "normal" I fall into being his wife and sweetheart and feel like he'll know if I'm lying or playing games with him. So I tell him it's not just the legs, it's the dementia. Then he gets quiet and/or angry/hurt. I've made him suffer again. This is the 3rd time. Why can't I learn???


Everybody says what NOT to say, but what should I tell him when he asks again? I've tried saying, "Let's just take it one step at a time." Any other suggestions? He's in mid-stages, but functioning well most days, at least he SEEMS to be. Don't know how he'll be post-anesthesia. I know that will not be good for his brain either.

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Tell him you don't know.

You aren't lying or playing games, you don't know.

If he persists, tell him when he has recovered he will get to go home.

You know he won't recover but, he doesn't. Again, you aren't lying, just not elaborating.
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Earthgrammy Dec 2021
True. Thanks much.
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It's hard to change your old habits. Be patient with yourself.

You'll do better at catching yourself before you bring up his dementia. Follow his lead. If he's happy to focus on the back surgery and recovery, then go with that.

I like your saying of taking it one step at a time. Have a subject ready to change the topic to.

We're all human, doing the best we can, and we will continue to make mistakes. Care taking is not easy so we do what we can but it pushes us to our limits much more often than we would like.
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Earthgrammy Dec 2021
Thanks for that. I remember our primary doctor telling me that no matter when I decide "it's time" I will feel guilty and uncertain.
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Yes, he is sad when he realizes (over and over again) that it is dementia, and that he will not be going home. Is this not worth being sad over? Because it is unlikely, now he has suffered another loss, that he will be happy about this, no matter how it is handled. I always recommend honesty. It is my belief that we owe them the dignity of at least that.
There is no way to make things all rosey; not everything can be fixed. Do the best you can. Allow him the sadness of the situation.
I think there is no answer here that will lead to happiness, so why not just be honest?
I am so sorry you are both enduring this.
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Earthgrammy Dec 2021
Thanks, AlvaDeer.
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Sorry you’re having such a struggle. It’s a huge life change for you both, very understandable to not always have the right words. I agree with never talking about dementia, it’s frustrating for you both and doesn’t help. Let him know you’ll always be his advocate and that you don’t have answers. Wishing you both peace
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Earthgrammy Dec 2021
Thank you. I'll be sure to mention "advocate" more often.
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I've taken the approach that explaining things to my husband is a lot like acting-repeating your lines for the director until they're perfect. So, he asks me (again) what are we doing tomorrow "a movie and dinner!" is my reply-true, simple and direct. I'm sure he'll ask again. It seems to me that there's just one tiny circut in their brain that gets into the repeat groove-they obviously do not know it and repeat behaviors-at least for now, I'm ok with it. He seems to be comforted by my answers and if that's all it takes-that's ok by me.
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How about telling him it’s up to the doctor and/or his treatment team to evaluate and clear him for any discharges or transfers. This is technically true, and it doesn’t put emphasis on his declining health, but on monitoring it.
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Don't ever tell he will go home, when. He will latch onto that and use it constantly trying to.alter terms. It depends on doc's would best be used.

He is going to memory care, then surgery then rehab. Why not straight to surgery, then rehab then figure out what care he needs. I am puzzled about why memory care first. How long after memory care entry is the surgery?
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Don't feel bad. You're just the wife, not an expert in dementia. Continue to act as his loving wife and let the staff at the memory care facility handle his dementia. Incidentally, in view if his mental condition, I would avoid any major surgery for him. Surgery is a major stress, both physically and mentally. The benefit appears to be minimal and the risks are too great. I think that major surgery will do more harm than good,
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I'm sure your husband's doctor has discussed the risks & benefits of having back surgery with both of you! We on this forum are surely in no position to be telling you what to do or not do in terms of having surgical procedures, nor are you asking our advice on that matter.

You can tell DH that he is going into this AL on doctor's orders. He can come home when the doctor tells you both it's okay to do so. End of subject. Keep repeating that statement over and over again, as needed, when DH questions you.

Being totally 'honest' with a dementia sufferer makes no sense, really, because there is a broken brain involved here. The real goal is to keep them calm and relaxed at all costs. Don't apply rules of normal life to dementia! There's nothing normal about dementia, so that's when we need to get creative with what we say to our loved ones to reduce their stress. Of course there's nothing 'happy' about dementia, let's face it! But life in Memory Care isn't all bad, either. They get to socialize daily with people their own age who are in the same boat. My mother's life in MC is pretty decent, really. She now thinks the staff takes her out every evening to a different restaurant and to a show, so that makes her quite happy! She's made a few friends there, too, and they do activities together and whatnot. It's the best of a bad situation, in reality. I never talk to her about having 'dementia', of course, because that serves no useful purpose. She knows she's got a poor memory and I tell her we ALL have memory issues as we age. She knows she's living in an AL b/c she needs A LOT of help with everything.

Wishing you the best of luck getting DH set up in MC and with his upcoming surgery.
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Seems easy to say “when will I learn” but you were married to the mentally sound husband a lot longer than to the husband with dementia. I think you should give yourself a break.
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Just tell him it will be until he gets better.
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Stop answering him. Just keep telling him you don't know. He's asking over and over again how long because he doesn't remember you explaining it to him. If you say he's staying there permanently because he's got dementia all that will do is upset him in the moment. Then he'll forget and ask you again and again.
Just keep telling him you don't know how long.
Now, you're going to be in for a very trying period of transition with him once he's in the MC. He will insist on coming home and that will likely be what he gets fixated on every time you visit or call him. It will be okay. You're doing what you know has to be done. All you can do is try to be patient and remember to take care of yourself and your own needs.
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