1. < Caregivers: Dementia

What is the best thing to say?

Posted by captainoftheship @captainoftheship, 1 day ago

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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celia16 | @celia16 | 1 day ago

That’s tough news to get. I understand why hearing the news everyday would bother him. He probably forgets he was told the day before.

I can just offer what I experienced with my cousin, who I cared for until her death. Initially, she seemed to understand, even when the neurologist diagnosed her with significant dementia, but she forgot. I decided to keep her as happy as possible, so I was positive when she worried or seemed upset over the way she was. I would say that she was behind on her nutrition and we were going to get that back on track and she’d get stronger…and, her medications needed adjusting. That would help get her feeling better. I told her that her memory was poor, but none of us have a perfect memory, nor bladder (she became incontinent). Not to be embarrassed. I said don’t worry, you are cared for and your family loves you. (I will say that with dementia, a lot of people fall away…no one offered to help me with her care. No one came to visit. Fortunately, she forgot about them early on.) So, try to get your own support system. Even after placement in Memory Care, the caregiving duties were enormous.

You can try various things and see what works best. Everyone is different.

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1 reply
unclescotty | @unclescotty | 10 hours ago

My mother recently moved to a memory unit from an assistant living facility so they are apart now. Her memory loop is about 5 minutes. She has been very angry that we shoved her in there. She would constantly yell at all of us asking why we put her here. We told her that we told a hundred times and she said tell her another hundred times. We ended up printing out a note for her and laminating it. She carries it everywhere. It has made a major difference.

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1 reply
captainoftheship | @captainoftheship | 8 hours ago

May I ask what you wrote on that card? Thanks.

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captainoftheship | @captainoftheship | 7 hours ago
In reply to @celia16 "That’s tough news to get. I understand why hearing the news everyday would bother him. He..." + (show)
@celia16

That’s tough news to get. I understand why hearing the news everyday would bother him. He probably forgets he was told the day before.

I can just offer what I experienced with my cousin, who I cared for until her death. Initially, she seemed to understand, even when the neurologist diagnosed her with significant dementia, but she forgot. I decided to keep her as happy as possible, so I was positive when she worried or seemed upset over the way she was. I would say that she was behind on her nutrition and we were going to get that back on track and she’d get stronger…and, her medications needed adjusting. That would help get her feeling better. I told her that her memory was poor, but none of us have a perfect memory, nor bladder (she became incontinent). Not to be embarrassed. I said don’t worry, you are cared for and your family loves you. (I will say that with dementia, a lot of people fall away…no one offered to help me with her care. No one came to visit. Fortunately, she forgot about them early on.) So, try to get your own support system. Even after placement in Memory Care, the caregiving duties were enormous.

You can try various things and see what works best. Everyone is different.

Jump to this post

Thank you. That's helpful for me.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | 3 hours ago
In reply to @unclescotty "My mother recently moved to a memory unit from an assistant living facility so they are..." + (show)
@unclescotty

My mother recently moved to a memory unit from an assistant living facility so they are apart now. Her memory loop is about 5 minutes. She has been very angry that we shoved her in there. She would constantly yell at all of us asking why we put her here. We told her that we told a hundred times and she said tell her another hundred times. We ended up printing out a note for her and laminating it. She carries it everywhere. It has made a major difference.

Jump to this post

@unclescotty Welcome to Mayo Clinic Connect! You also provided the others with a great tip to use if someone doesn’t hear you!

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