What is the best thing to say?

Posted by captainoftheship @captainoftheship, May 2 12:10pm

My husband was diagnosed with dementia over a year ago. He nearly daily asks when he forgets things or when he is upset with himself, "What is wrong with me?" Honesty seems too make him even more anxious, like if I say yes, you forgot that or you have dementia. I know that might be too blunt, and I have attempted to say to him something like, what do you need for me or
what's going on? But he's unable to respond to that or even have a conversation without again getting more angry. I'd appreciate any advice as to what I could say that could be kind, tolerant and helpful. Thank you in advance.

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@deniseheart

My mother was moved to assisted living on Feb 1 of this year. At least 5 times a day she would call me and ask if she was living there permanently. Each time I would simply answer yes. Then after every 'yes', she would reply 'oh, I am not going back to blank-city? And I would reply, 'no'. Unfortunately this created a loop of grief and sadness for her since she was missing her home of 60 years. This past week I made some signs for her (at her request) and placed them in locations that I know she would see them. They simply say 'I am permanently living at the blah-blah community. My home in blank-city is now too big and unsafe for me.' Fortunately this worked, and I no longer get asked these difficult questions and she doesn't go into grief mode.

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Thank you for the info. I tried using signs when I went to store etc. I didn't think they helped her. Her attention span is very limited. However, after reading this, I will post the notes in more places. It can't hurt and maybe it is helping and I am just not aware .

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traav77, so hard to hear and to respond to. Maybe best to respond to his heart. "There is nothing wrong with you, I love you" followed by a reassuring hug. Then perhaps an offer of help or perhaps distraction to something he likes.

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Captainoftheship:
My husband gets frustrated and angry with me regardless of what I say but we have always been told each other the truth so when he asks what’s wrong I tell him he has dementia and he forgets and it’s something he can’t help and he understands that even though he hates it. 10 minutes later he forgets he asks so I tell him the same thing again and he says oh yeah I forgot you said that.
So whatever you decide to tell or not tell him make sure whatever it is you say make sure it’s the same thing time after time as he might be able to realize if you change your reply. Then he won’t trust you.
I know it’s so hard. I keep telling myself everyday this is not the same man I married now and have to remember that. We will be married 56 years 6/1.
Be strong Captainoftheship🙏🏻

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I Googled a question about whether to tell an Alzheimer's sufferer that he has the disease or not. The answer came back: don't tell. Well, I've already done that but since my husband absolutely denies he has dementia I guess I didn't do anything ruinous. Apparently, those who are in denial (and it could be the spouse or offspring who's in denial) need time to process this very distressing information, so don't argue, correct, or try to explain. Okay, but that makes it difficult to get my husband to do things he should--like go to a senior center for dementia patients. I think he might like it but I'm afraid to bring it up. I suppose some duplicity is required at times, but I find that difficult. I'm going to visit a care program this afternoon to get a sense of things. I'm not telling my husband that I'm doing this.

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@jude5

Captainoftheship:
My husband gets frustrated and angry with me regardless of what I say but we have always been told each other the truth so when he asks what’s wrong I tell him he has dementia and he forgets and it’s something he can’t help and he understands that even though he hates it. 10 minutes later he forgets he asks so I tell him the same thing again and he says oh yeah I forgot you said that.
So whatever you decide to tell or not tell him make sure whatever it is you say make sure it’s the same thing time after time as he might be able to realize if you change your reply. Then he won’t trust you.
I know it’s so hard. I keep telling myself everyday this is not the same man I married now and have to remember that. We will be married 56 years 6/1.
Be strong Captainoftheship🙏🏻

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Ask him what does he think is wrong?

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To me, if the person is not able to process and retain information, it serves no purpose to repeatedly provide them hurtful information. It might help me feel better, but if it’s not helping them…..

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@gilkesl

Ask him what does he think is wrong?

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Thanks but of course I have asked this in the past and he says I’m wrong and he doesn’t have dementia. That’s the problem he’s in denial most times. I won’t ask him that again.
He does catch himself doing things wrong and tells me he’s so confused and can’t think straight and I should put him away. When I tell him that’s not happening he cries. It’s so heartbreaking 💔

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@jude5

Thanks but of course I have asked this in the past and he says I’m wrong and he doesn’t have dementia. That’s the problem he’s in denial most times. I won’t ask him that again.
He does catch himself doing things wrong and tells me he’s so confused and can’t think straight and I should put him away. When I tell him that’s not happening he cries. It’s so heartbreaking 💔

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This is exactly the phrase my husband uses. "You should put me away". I, too, assure him that's not happening and I want him here with me. Today, he keeps apologizing for being so much trouble. It's heartbreaking 💔 😢

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@jehjeh

This is exactly the phrase my husband uses. "You should put me away". I, too, assure him that's not happening and I want him here with me. Today, he keeps apologizing for being so much trouble. It's heartbreaking 💔 😢

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So heartbreaking! That’s the hardest part for all of us watching our loved ones.
My husband apologizes too. Says he’s a burden. I tell him no he’s not a burden he is sick. 💔

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In my case, I know I need to feel useful, even in tiny ways.

Since becoming disabled more than six-plus years ago, I often feel like a burden on my wife, though she insists I'm not.

About three years ago, we were going somewhere in the car when I noticed a mosquito in the car. After unsuccessfully swatting at it several times, I said to her, "I wanted to be your knight in shining armor, your dragonslayer. Now I can't even kill a mosquito."

Without hesitation, she answered, "You'll always be my knight in shining armor."

How can I not be grateful, and not be motivated to keep improving?

Not long thereafter, I started my YouTube channel about my recovery journey, "From Recovery to Discovery". Viewers tell me that it helps them accommodate their own challenges.
https://www.youtube.com/@srlucado/videos

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