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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Profile picture for captainoftheship @captainoftheship

I get it. I feel exhausted as whatever I ask of my husband kindly and or directly he asks so many questions, doesn't remember my responses and often does not complete the task which leaves me tired giving instruction and finding doing double duty as well to get the job redone or completed from turning on the dishwasher to watering plants. Having an hour to myself is bliss. I call it sacred space. I think any carer needs this. I work on getting this to re-fill my cup ( which recently has felt like there is a crack in it. )

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It’s such a relief to know we are not alone. At least dinner is in the crock pot? 😂 I just have a couple of small things to do then I need to get a shower, I read the other day you only need 3 or 4 a week? I’m so tempted?😂😂😂

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Just agree if you want a peaceful life and even then it’s not always easy. They say patience is a virtue now I know what they mean?
I am learning but I was lacking in that department. 😍

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Profile picture for captainoftheship @captainoftheship

I get it. I feel exhausted as whatever I ask of my husband kindly and or directly he asks so many questions, doesn't remember my responses and often does not complete the task which leaves me tired giving instruction and finding doing double duty as well to get the job redone or completed from turning on the dishwasher to watering plants. Having an hour to myself is bliss. I call it sacred space. I think any carer needs this. I work on getting this to re-fill my cup ( which recently has felt like there is a crack in it. )

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We all do the best we can with the situation we’re in. I, too, am asked repeatedly how can I help you when I know that he can’t. He wants to help me but he doesn’t know how or what to do. If I do ask for help, he forgets and I have to do it myself and then he tells me “I could have done that “. Every morning when I wake up and Evening before I lay down I pray to God that gives me direction on how to help him and me thru this. I pray that I make the right choices for us and to give me patience and the strength as we go through this journey together. I am so thankful and grateful to have found this group, I don’t think I could managed without you. I am so thankful to know that I’m not the only one going through this. God bless you all.

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Profile picture for jeanadair123 @jeanadair123

As I sit here wanting to scream I am so grateful for being able to vent here. I don’t feel I can or want to tell my close friends how things are progressing, I don’t think they understand. I have one friend close by who knows how things are but even then I don’t want to overload on her and spend our special time only talking about this?
My husband wants to help so badly, he just finished the dishes and took the garbage out but now in the middle of me making a new recipe he keeps asking what can he do? Meanwhile I forget what I am doing? I feel like my brain will explode. I just took my blood pressure it was 115 over 66 so obviously that is not effected. He just came into the bedroom where I am and said would you try and help me do things so I will remember? Because he so desperately wants to help. I now feel as small as a pea. So I shall take a deep breath and go and finish my cooking. Thanks everyone.

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HI @jeanadair123, it sounds like your husband would be receptive to a day program. Is there one in your area?
Maybe you could write out a list of things for him to do everyday, easy chores, like make the bed. My husband does that. It's not perfect, but it will do. I also give him his cleaned clothes to fold and put away.
He washes and dries the dishes, not very well. There's no use correcting him because he'll forget, and often I have to hunt to find a certain item, missing from its usual place.
He forgot how to shave so I wrote out step by step instructions which he keeps in the drawer with his shaving tools. He refers to them, but wants my approval to do most things.
When I'm preparing to leave the house, he asks me so many questions about where I'm going and when I'll be back, that I don't know whether I'm coming or going. I ask him to be quiet so I can focus.
Last week he asked me so many questions that I snapped at him and told him to go away. Then I saw him shuffle off like a poor lost soul and I felt so bad. Fortunately, he forgets. A moment later, I engaged him in a friendly tone so we could get back on track, but occasional derialments are to be expected!
I'm fortunate in that he will get engaged in working on jigsaw puzzles. He can handle 100 pieces, and will keep at it for a couple of hours.
There's a good caregivers support group in our area, once a month in person, so I go to that (through the Alzheimer's Association).

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Profile picture for Teri @tsc

HI @jeanadair123, it sounds like your husband would be receptive to a day program. Is there one in your area?
Maybe you could write out a list of things for him to do everyday, easy chores, like make the bed. My husband does that. It's not perfect, but it will do. I also give him his cleaned clothes to fold and put away.
He washes and dries the dishes, not very well. There's no use correcting him because he'll forget, and often I have to hunt to find a certain item, missing from its usual place.
He forgot how to shave so I wrote out step by step instructions which he keeps in the drawer with his shaving tools. He refers to them, but wants my approval to do most things.
When I'm preparing to leave the house, he asks me so many questions about where I'm going and when I'll be back, that I don't know whether I'm coming or going. I ask him to be quiet so I can focus.
Last week he asked me so many questions that I snapped at him and told him to go away. Then I saw him shuffle off like a poor lost soul and I felt so bad. Fortunately, he forgets. A moment later, I engaged him in a friendly tone so we could get back on track, but occasional derialments are to be expected!
I'm fortunate in that he will get engaged in working on jigsaw puzzles. He can handle 100 pieces, and will keep at it for a couple of hours.
There's a good caregivers support group in our area, once a month in person, so I go to that (through the Alzheimer's Association).

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Thanks for your response.
My husband likes to be with me he always goes to our appointments and shopping with me.
He does the dishes, washes and dries them, makes the bed, garbage, keeps his man cave spotless, works outside sweeping etc. mostly everything you mentioned. I sometimes spend a lot of time looking for things. The other day he asked if I could help him when needed. I try to understand but it’s not always easy. But I always remember the man in-between who loves me so much.

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My husband doesn't like to leave home. It's his safe place. He spends a lot of time dozing during the day and sleeps pretty well through the night.
I can leave him for a few hours, but I limit that and don't venture too far from home incase there's an emergency.
He's become sweet and loving in the course of this disease, only occasionally cranky.

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My husband also prefers to stay at home. I have a camera inside so I can check on him with my phone while I’m away. Gives me peace of mind.

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Profile picture for sillyblone @sillyblone

You just described my husband! He tries to fix things and messes it up. I stay several steps ahead . Trash, Recycle, bills, repairs. Cleaning up the yard after a storm. Water plants and of course clean up the house. Sometimes I am so tired I just want a day that I do nothing at all. Nope I at least have to cook . I won't let my spouse touch things in the kitchen. He does not always remember what to do. His hands shake and I certainly don't want a fire or him cut on knives ,etc. I know it is hard for him to not help. I engage in anyway I can. That helps him feel like he is part of decisions and miscellaneous stuff. But he is a bull in a China shop. He has forgotten how to do so many things together. Games, special things he would do for me like flowers and a nice card. Last Christmas I let him off at a Hallmark store and he bought 3 beautiful cards. Christmas, my Birthday and our Anniversary. He was so happy about it. I think the little things matter. We spent Christmas in another state. I did not decorate for the first time in 51 yrs. I love how he took the time to write which he does not do well because of shaking hands. Love was in his eyes when he gave me my card's on each of those events with the biggest smile 😃

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This thread is so validating for me. I'm seeing how I'm not alone and also some thoughts that give me ideas of how to create some peace. I have trust in my Higher Power, too. Yet I am human and need support and do a surrender der prayer daily and then some. May all carers be blessed and those they care for.

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Profile picture for captainoftheship @captainoftheship

This thread is so validating for me. I'm seeing how I'm not alone and also some thoughts that give me ideas of how to create some peace. I have trust in my Higher Power, too. Yet I am human and need support and do a surrender der prayer daily and then some. May all carers be blessed and those they care for.

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Thank you ! I really appreciate your comments. Yes you are right about God. Prayer's!

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Profile picture for jeanadair123 @jeanadair123

It’s such a relief to know we are not alone. At least dinner is in the crock pot? 😂 I just have a couple of small things to do then I need to get a shower, I read the other day you only need 3 or 4 a week? I’m so tempted?😂😂😂

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Love yourself sense of humor.😀💞

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