My newly diagnosed (3 months) mom with dementia is well aware of her diagnosis. She used to be an LPN. While she has known she was having memory problems, it wasn't made official until I pushed her to make an appt specificly for it.
Today she tried writing a check while I wasn't home and couldn't do it after 3 attempts. She said she feels "useless". I think this was the realization that she is actually starting to decline. She's frustrated the medicine is not working.
I just reinforced to her that she wasn't useless and things like this will happen, especially since she doesn't do it often. Also let her know the medication will only delay the progress.
Was this the right response? She started crying. What else can I say to her to comfort her? I feel it's so hard on her knowing that she is declining than it would be later when she doesn't realize what's going on. I can be wrong though, I'm not there yet.

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Of course she started crying.
Is this not worth mourning?
If THIS isn't worth mourning, what in the world would be.
And you are correct. It is very difficult to know what's coming.

You Mom is exactly where my brother was when he was diagnosed with probable early Lewy's dementia by symptoms. He and I scambled to get it together. Sell his last small home after the tough decision that with his living one end of the state and me at the other there was no one to care for him in a town where he needed wheels but could no longer drive. He had to give up all his last things, and for a man always into control he had to give up all control by making me his POA and Trustee. We made him a private account of his own. I sent him monthly accountings of every penny into and out of his accounts/assets. We got him a wonderful ALF.
He told me how much he would rather be dead. I sympathized and told him I understood and wanted for him what he wanted, but that wasn't an option so we had to do our best like we always did through life.

It's awful. She knows. I am an RN and I know she knows. Don't deny what she says. She is right. Let her cry. Cry with her. Tell her you agree with her that it is a cruel thing to face down but you will do it together. That you will do your best to care for her. That you love her; that this wasn't your choice or hers and neither of you can change it.

My brother said he would so rather be dead. And when he got sepsis we got him directly into hospice and he let go/I let him go. I felt only relief that he didn't have to go into the worst of the darkness. Meanwhile he told me all about his hallucinations. And he told me that while he didn't like knowing where Lewy's was going to take him, he was glad to know about why his world was changing and why he saw it so differently.

So on you go, hand in hand. Seeing this through the best was you can. There's no denying it. It is right in your two faces. Do your best. Tell her you love her and will be there for her.
Helpful Answer (15)
Reply to AlvaDeer

Sounds like you handled it really well.

Just learn as much as you can about dementia. And ask any ? you want

Your doing great
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Reply to Anxietynacy

This will be a difficult time for both of you. as others have mentioned, try to start working towards needed precautions now rather than when they become a crisis. However, it sounds like you handled everything as well as can be expected. There is no perfect answer but remember to give both yourself and your mother room to grieve and come to grips with this new reality. Unfortunately, your reality is going to be doing a lot of shifting. Just remember to approach everything with as much compassion and care for both of you.

I will give one piece of advice for later on. As my mother‘s dementia progressed, she would become extremely frustrated and not know why. I realized that she would see me doing things and felt like she was “useless.” I started to look at every chore I was doing would set aside something that was repetitive and only had a few steps. I would then ask mom to do those things to help me out. For example, towards the end of her life, I wouldn’t fold the clean towels. When she would want to help, I would say something like “thank goodness, can you fold these?” and I would bring out the laundry basket so she could take care of that for me. When I could find a chore for mom to do, I was almost always rewarded with a smile. That is a memory, I now cherish.

Good luck with everything and know that you are not alone.

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Reply to CoffeePaula
Bunnymomjulie May 17, 2024
My mom's memory care place is run like a Montessori in that they give every resident a job according to their preference and ability so they all feel included and part of the community. It's amazing. My mom is like a different person. She feels like she is at boarding school or something and she has friends.
Something you could do would be to talk to M about the future. If this is coming your way, how can we organise the house better? And the tasks? Should you set up a POA to deal with the need to write checks? Is this the best place for you to live? Where else would be better, and when? What would you like to do now, while you are still so very capable? What’s on your bucket list?

Your M is an intelligent woman, and no wonder she is upset about her diagnosis. You don’t need to cover everything on the list I just wrote, but it’s a good time to start talking. And because she IS intelligent and experienced, talking it through is a tribute to her that may well make her feel better – and more in control.
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Reply to MargaretMcKen

You did fine. It’s normal to mourn the losses. Hold her hand and reassure her of your love and support. I wish you both peace
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Reply to Daughterof1930

If it was happening to you, you wouldn't like it. It would be very upsetting.
You didn't cause it, this is the cycle of life. Nobody likes it. Nobody can control it.

All you can do is be supportive.
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Reply to Dawn88

I think it’s essential to live in the present. My mom and I laugh a lot. I think if we feel sad about what they can’t do anymore they will too. I act like she’s the same old Mom. If she can’t do something I’m completely nonchalant about it. If she forgets something and is frustrated about it I point out it’s not her — it’s just her brain.l — she’s still herself in so many ways.

I point out all the times she notices or remembers things and I don’t. I laugh about the dumb things I do. I tell her *I* need assisted living. We laugh all the time. My take is that every stage of life has its pros and cons. If you look at it from a certain angle not having to write checks or do taxes anymore is freedom! I take my cue from the trees. They don’t grieve losing their leaves. Change is the only constant thing in life. We are dying from the moment we are born. I truly believe we can be at peace with — and love — every stage.

We also sit together often and list all the things that are great in our life. We can all find someone who has it better than we do but millions of people in the world have it worse. ❤️
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Reply to pleasegodhelp
Calliesma May 17, 2024
This is one of the most beautiful posts I've read on this subject. Thank you. Love your username!
You handled it perfectly.

Consider that she might need an anti-depressant, and ask her doctor about it. She's going through one of the worst realizations that anyone can, and sadness is to be expected.

This would be a good time to put all of her bills on auto-pay at her bank. Then she'll hardly have to deal with checks anymore at all. You can dole out cash as necessary.

If you don't have her POA, make sure you get it. You can then be in charge of her money, which would be a good idea now.
Helpful Answer (6)
Reply to Fawnby

I think you responded great! Let her cry - give her love and now when it is time to write the checks let her assist YOU. Let her add the columns or get the paperwork out, eventually get the check book out of her hands and start paying the bills online. Then eventually get those items out of sight and get her interested in other things. This is what I did with my daddy. He started giving money away because he lost the sense of what the value was. Example: my very good friend was assisting me with caring for him and he gave her two hundred dollars for a hamburger! She took it from him, because by this time we had decided that arguing with him was not working, and then gave it to me. I had to start paying all bills online and all his bills became paperless. Once he did not see the bills he forgot about them. Let your mom do the things she can - water plants, wash dishes, vacuum, etc. This way she will not feel useless and remember to praise her for the things she can do - no matter how small, we may think, the task is.
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Reply to Ohwow323
AlvaDeer May 17, 2024
Such great advice. The other thing I think is that we as caregivers so often take on the burden of "making them happy". That can't be done anymore. So best we can do is listen, listen to how hard it is to lose things one after another, listen to the helplessness. Bear witness. We can cry with them, but we just can't make everything all better. There's no band aid for this boo boo. But the watering the plants thing, and concentrating on what they CAN do is such a help.
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Let's do *that task* together ❤️😀

I LOVE that comment below saying "It's not you - it's just your brain!"

Reminds me of a book I read (The Eye of the Storm). The old lady, (bedridden maybe) is not embarresed needing her body washed, hygiene help etc. Said something like "That's just my body". It stuck with me... we are still US inside, beneath the wrinkes, grey hair, no hair. Still us when our eyesight dims & hearing fades. When our brains lose a few connections too.
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Reply to Beatty

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