How to tell your spouse she has ALZ

zarzycpp

Do you tell your spouse she has ALZ or you let someone else, or you just don't tell her? This is all new to us.

JeriLynn66

https://alzconnected.org/group/32-new-caregiver-help Under Quick Links is a tab for "Groups". The one I attached for you is a link to that Group, set up by members here. Lots of good information. Others will be along soon to chime in but most folks do not use the A or D words with their loved ones. Most persons with dementia do not believe there is anything "wrong" with them. Your situation may vary.

There are lots of good people here with boots on the ground who are ready and willing to help answer questions. There is also an 800 number listed on this site that can connect you to a Care Consultant. These are licensed and trained Social Workers who can speak with you 24/7.

sandwichone123

When my spouse was first diagnosed we talked about the diagnosis, but it wasn't long before he forgot. I felt like he had a right to be told, but I wasn't going to tell him over and over. Later on, he heard someone else talking about his diagnosis and was very upset by that, so now I protect him from hearing it at all.

terei

There is usually no reason to discuss this in detail with the LO. When my mom would refer to her ‘issues’ I would tell her she should not worry, her memory was just affected, as everyone’s ’ is when they get older. At one point, one of her doctors mentioned the word ‘dementia’ within her hearing and occasionally after that she would tell people she had ‘dyslexia’ which I would have to tell people later was not the case.

There is generally not a reason to involve the PWD in the details of their illness since it can result in the LO becoming upset or actually denying there is any problem at all.

I don’t know what would be accomplished by telling the LO she has Alzheimer’s

Phoenix1966

When my grandmother was discharged the first time from the hospital after an event brought on by her dementia, she looked me in the eye and said, “The doctor said I have something that’s going to kill me. Don’t worry because it’s not contagious.” After a long pause, she continued, “I just can’t remember what it is.”

By that evening, she’d even forgotten the doctor had told her she had a terminal condition. Let sleeping dogs lie is my suggestion.

harshedbuzz

@zarzycpp

The standard answer is to not dwell on it.

Sometimes a physician will state and explain the diagnosis when it is determined. Sometimes doctors don't and a LO might ask family what is happening. There is no -one-size-fits-all answer to this. For someone in the early stages, it might be appropriate to share the answer and have a discussion about the future. For someone diagnosed further along in the disease or someone who is prone to depression or agitation it might not. In the context of another life limiting condition, it might be best to skip over it entirely.

In my dad's situation, it was brought up rather a lot. He had an alcohol-related dementia along with mild Alzheimer's. The latter was treatable and potentially not progressive with a sober lifestyle meaning he had to be reminded, or nagged at, why he wasn't supposed to drink. This was not sustainable for a whole lot of reasons.

What you want to avoid is attempting to reason with a PWD using their dementia diagnosis as justification for limiting their autonomy.

HB

harshedbuzz

Quilting brings calm

My mom heard the word dementia several times at the doctor’s office. She never once acted as if she understood what the word meant. You can’t use logic with someone whose brain is broken. We just referred to it as memory issues due to aging and left it at that. if your loved one suffers at all from anxiety and depression, you do not want them to focus on having dementia. That’s a recipe for disaster.

SDianeL

my DH’s doctor never used the words. She said white matter disease which he didn’t understand. I called his doctor a brain doctor. When she prescribed a new medication he would ask what it was for and I would say to help your brain work better. Telling them a diagnosis serves no purpose and only upsets them. They won’t remember anyway. My opinion.

H1235

My mom was told she had dementia when she was originally diagnosed. She is an unusual case in that her memory is not bad( she has poor judgment, anosognosia, no executive functioning). All most 2 years later she still remembers she has dementia. Since she has a bad case of anosognosia she thinks she is in the very early stages (probably actually stage 4). She worries about what is to come, not realizing she already has many of the symptoms she is concerned about getting down the road.

zarzycpp

Thank you all for your comments. I really appreciate so many of you for your advice. I'm still loss on how my wife will take this all in. She remebers what her mother had to go through with it and she says she can't do it. I'm trying to push through to get her the infusions with Leqembi.

Have your persons had these infusions & do you think it has helped.

God Bless you all.

Arrowhead

My wife was told by her neurologist, and we wasted little time getting her legal affairs taken care of. After that, it was never brought up again.

harshedbuzz

@zarzycpp

I would have a frank discussion with the neurologist about what you can expect from the infusions.

Some studies show that the medication isn't as effective for women as a group, the elderly or people of color. Ideally you can expect a delay of progression of about 8 months.

https://www.axios.com/2023/07/11/leqembi-azheimers-drug-women-men-efficacy

harshedbuzz

Also this-

The Second Drug Approved for Alzheimer’s Is Not Much Better Than Aduhelm, Experts Say