Do we need to tell my mom her diagnosis?

JoJo1020

Hi there

I am new to this forum and am so very glad to have found this site. My mom has recently been diagnosed with dementia (Oct ‘21). The neurologist thinks it’s Lewy Body Dementia but that is only by ruling out other types. My mom was living alone and seemed to be ok until a fall in October, and since then she has had a rapid decline. Hallucinations, Delusions, Compulsive Calling, Lots of Confusion etc. Her neurologist thinks she’s in the moderate to severe stage. She was in a rehab and just moved to a residential care facility. We have all told her there is no commitment to this facility and as she gets stronger she will have more options (she cannot sit upright without support, stand or walk) but we all know she will never be able to live independently again. Her neurologist told us she will never walk again either, but she is highly motivated to get back to physical therapy to walk. My siblings and I are all so torn about what we should be telling her about her diagnosis. We don’t want to crush her spirit or her momentum to keep working on her strength and stimulation, but we don’t want to give her false hope either. I asked the neurologist but he wasn’t super helpful about what we should be saying We meet with him again on 2/8. Any help you can offer is so much appreciated!! 

Many thanks!!

Iris L.

Welcome Jojo.  Please familiarize yourself with anosognosia.  This is a characteristic of the dementias that causes the PWD (person with dementia) to be unaware of her limitations and of having dementia.  She truly believes she is fine and will resist and become upset if you confront her with reality.  You will have to learn workarounds to get things done.   The members will teach you.  It is better to avoid confrontation.  Tell her what keeps her comfortable. Keep reading and keep posting.

Iris

JoJo1020

Thank you so much Iris. I appreciate your help and insight. I definitely have a lot to learn. I’m so glad to have found this group!

M1

Hi jojo, my sister in law died of Lewy Body a year ago, not diagnosed until her final hospital admission as the early symptoms had been primarily motor(she also suffered multiple falls).  I suspect the neurologist is reluctant to say this to deprive you and her of hope, but I suspect it is extremely unlikely she'll regain any ability to walk. Have you thought about a hospice evaluation to help keep her comfortable? And I personally would not push to tell her the diagnosis, as Iris said I would tell her whatever gives her comfort.

Good luck, I'm so sorry you're going through this.

Sailorr

It's better to let her know and be stronger to face the diagnosiswww.cicool.com

harshedbuzz

JoJo-

What to say isn't typically something on which a neurologist would opine. As family, you and your siblings not only know what is likely the best approach for your mom, you will be the ones who live with the consequences of her reaction to what she is told. 

I see hope- even false hope- as a kindness in a situation like this when the alternative would be to tell her this is as good as it is ever going to get and you won't be leaving this place alive. If she were in a dangerous living situation with anosognosia, it would be prudent to do what you need to in order to keep her safe, but this is not that situation.

HB

JoJo1020

I’m so sorry for your loss. We haven’t looked at hospice yet but thank you for the recommendation. What a horrible horrible disease. The man across the hall from her has advanced stage LBD, so I have an awful glimpse into what is to come.  It is heartbreaking to watch her go through this and I am a total wreck. I’m so happy to have found this group. I definitely err on the side of not telling her. She thrives on talking about things she wants to do “when she gets stronger” (travel to Italy, play golf again etc..) I just don’t want to take that away from her 

JoJo1020

Thank you! I will check it out. I appreciate it!

mommyandme (m&m)

My mother got herself diagnosed.  She knew her mind and body very well and she was always trying to get diagnosis for things and fixes for them. She was an RN.  With that being said, she now has no idea what’s going on. In an earlier stage she’d wonder why she was having problems.  I asked her if she knew what Alzheimer’s was, when she said “no” there was no need to further discuss it.  I just said we all have these kinds of problems and not to worry, I was there to help her with whatever, whenever.  

I don’t think discussing it with your LO is necessary, even if she understands what it is.  Unless she brings her diagnosis up, no need to trouble her.

Welcome, yet sorry you’ve a need to be here.    

michiganpat

Each situation is different. My DH has dementia undiagnosed but obvious. His primary doctor is aware and said we would need his cooperation for further testing. I have talked with our kids and we have decided to not pursue it. He was very upset after the initial screening and said he would never have another "brain test". There is no cure and nothing to be gained by forcing the issue. He watched his Mom die of Alzheimer's and it was awful. He is in the early stages and I am going to try to enjoy the good days we have left. I am going to start seeing a therapist next week to help me cope. This is a horrible disease. Prayers for all of us on this difficult journey.

scarfire

hi jojo. i'm the primary caregiver for my mother who is in her 7th year of alzheimers dementia. we never told her about the diagnosis and to this day, she believes she is in great health at 90 years old. i don't think she would remember, even if we did tell her. she lives in a fantasy world and believes she is wealthy (she is not) with homes all over the US. she has bad days where her fantasies are all bad but we try our best to redirect her thoughts when that happens. sometimes we can, sometimes we can't.

i don't see any upside to telling her about her dementia diagnosis. best of luck and welcome to the boards!

dayn2nite2

When I was early in caregiving with my mother, I told her once that she had Alzheimer's and the devastation on her face, with the small voice from her saying "no..." destroyed me.  I never said it again, I just was vague if she would ask what was wrong with her and I would confirm that she wasn't "crazy" as she would put it.  I would just say, oh it's memory problems, don't worry about it, and change the subject.

There is no constructive purpose to telling her unless she has the ability to process this, so I always opted for the kinder approach after that first time.

JoJo1020

Thank you so much to all of you for your help with this. It makes me feel so much better to know I am doing the right thing by not telling her. My sister feels like we are being dishonest but I feel like it’s a gift to let her live with joy and optimism. I certainly would prefer that for myself. 

I’m so very sorry we all have loved ones going through this, but it makes me feel so much better to know I’m not alone in this. Thank you again!