Notifying family members

BooBoo2

This is my 1st time submitting to the Caregiver Forum.

I'm looking for guidance of how to discuss with my DW's (79) family that she is in mid-stage Alzheimer's. This is the opinion of our PCP & the feedback I have provided to him about her conditions. The reason I have not told her family is she has accused me of telling everyone that she has mental problems & the accusation of affairs, stealing of her money & clothes. This has been going on for over 4 years & never stops. Some days are good & some are bad. Due to the pandemic - we have not seen her family in over a year. She used to talk every week with her brothers & sisters. I'm not sure if I should notify them & face the wrath of my DW after she finds out I notified them. (She does not know that I know that she is having problems - she displays so much distrust towards me). I'm looking down the road & looking for guidance - should I or Not? I don't know here I would be without "The 36-Hour Day" book.

jfkoc

What seems fair and reasonable seems to be in contradiction to your wife's desires. I can understand the dilemma. My vote would be to follow your wife's wishes until you can not. 

Another great book is I'm Still Here by Zeisel. It may give you some answers to the balancing act you are in.

M1

BooBoo, I had similar issues six years ago when my partner first started having significant symptoms.  She has two younger sisters, and they were getting angry with her over various things when she would give contradictory information over the phone (neither sister is local).  I had to tell both of them that she was developing dementia--and they were both in complete denial for quite a while.  "No she's not, she just never listens"--things like that.  It took repeated conversations and discussions--and my giving them specific examples--for them to realize that I was right.  It mattered, because some family financial matters were being discussed.  Now six years later, one of the sisters died recently, but they both were ultimately grateful that I had clued them in to what was going on.  And were grateful that I was here to be the primary caregiver.

So yes, in some ways, I do think you should tell them; but I think it's worth considering the context:  what is their reason for needing to know?  Is it so they will know that accusations of infidelity or financial wrongdoing are not valid?  Is it for general context?  I would think carefully about it before you tell them, and also think about HOW you tell them:  I did it in writing, first, which gave both sisters time to consider what I was saying before they had to respond.  I also never asked for any specific help from either one of them, except to back me up in a general way when they talked to her.

Hope that helps.

Quilting brings calm

I would notify them.  You don’t know how much longer she will recognize them, you don't know how much longer before her paranoia turns toward them.  They might like a chance to visit or zoom while she still can.  They probably already know something is wrong.  You noted that she USED to talk to them every week, which implies she hadn’t for a while.  You can always tell them the truth about her not wanting them to know.  If one of them is someone you particularly trust, arrange for them to see the patient summary that you should be getting in writing or email from the doctors office.  That will have her diagnosis in it in case they don’t believe you.

Ed1937

My wife is an only child. No parents alive, or other close family. We had 8 kids who I thought should know, so I called a family meeting, and told them what was going on, and what it meant. I asked them not to say anything to her because she didn't hear the diagnosis when it was given, and does not know that she has dementia. It's been just about 3 years since I told them, and she still does not know. Your situation is different, but if you do tell them, you could ask for them to keep it confidential. It worked very well for us.

HusbandHasEO

I think you should tell them.  Ed's approach was perfect in my opinion.  Explain to them why it is important to keep it confidential, but that they should know what is going on.

CStrope

My DH does not have any family to tell, but he does have quite a few long long long time friends.  I did reach out to them and let them know what was going on.  I could tell that he was struggling while having phone conversations with them, and since that is the only interaction he has with his friends because of COVID, I wanted them to understand why things were different.  I also noticed DH cutting short most of his phone conversations, usually when finding the correct words became a problem.  For that reason I wanted his friends to know he was not ignoring them when shortening their talks.

Both my DH and myself need the support and understanding of friends and family.  I did not want to risk any relationships by NOT telling them.

caberr

I think they should be told and ask them to keep it confidential.  They may already have an idea something is up.

Marie58

You've gotten some good advice. One thing I'd like to add is that I got a lot of support once friends and family knew. Even long distance phone calls, texts, etc are encouraging to us caregivers.

1962ART

Dear BooBoo2:  I agree with all the suggestions others have had for you.  I would just add that you need to be prepared for the possible eventuality that the family does not believe you.  This happened when I told my family about DH.  I have never talked with DH's brother because the two talk so infrequently, it is really not an issue.  My sisters and their husbands all told me I was mistaken and my DH is "just fine."  After feeling abandoned, I just stopped any attempt at "convincing" them.  I am not responsible for their reaction.  DH is very high functioning and very verbal.   Pre-Covid family gatherings were exhausting for him because it was so hard to keep up the facade.

Luckily we live with our daughter so she can report what she sees to our son.  DH verbalizes disbelief at his diagnosis, but now he can just throw off a "I always forget" and move on.  I guess I need to adopt this attitude as well.

I do share what the neurologist's current diagnosis as it changes to kind of nudge my family into understanding that this is really going on. Have you thought of consulting a specialist?  Your neurologist may have some ideas about dealing with your DW's family.  The family may interpret your information as more "sneaking around her back." 

Think through clearly what you plan to do and who you need to tell.  In many cases, people don't need to know.  My best to you at this difficult time.

Gig Harbor

Let them know and ask them to just randomly call her. Ask them to talk about old times before you knew your wife and just reminisce. Those are the times she will remember most clearly. Ask them not to correct or disagree with her because it doesn’t help anything. You could see if FaceTime might make it even better. Let them know to let her also control the length of the call and to never ever mention her dementia.

HSW

Hi, I also went through many years of my DH confabulations. He never believed anything was wrong with him. Trying to get his family to help convince him to see a doctor ...response, I thought you guys were a couple. Not one of them helped or believed me. I ended up sending them the info from the doctor, and after diagnosis was confirmed from spinal fluid, I was done with them. Told them they didn't live with us and I wouldn't tolerate any more drama from them.

Their Mom was diagnosed shortly afterwards with Alzheimer's.  This raised their awareness. She died DEC 2019

 I provide updates every now and then. I still have to field ridiculousness. One sister sent me something which supposedly improves memory in healthy people. I proceeded to tell her how many steps there are in emptying the trash can.

Jo C.

When my LO developed dementia and it was pretty much evident, I could not discuss that with her; she would go ballistic.  That remained throughtout the dementia.  My LO had rigid false beliefs (delusions) so it was best to let all that go.

It came time to inform my brother and mother's sisters.   Instead of them hearing, they were incensed and denied, my brother most of all.  After the fact, I wish I had done that informaing by mail rather than by phone.  I kept my input calm and non-inflammatory, but boy; did I ever get a huge response of denial.

What I had to end up doing, was to wait a bit and  then rather than phone, write a missive outlining the diagnosis and all that entailed, AND I also included a copy of the brain scan interpretation which showed the dementia quite clearly as well as sending a copy of the Neurologist's report.  Still encountered some rather strange denial as time went by until things went far over the cliff; then they questioned other things in regard to treatment.

I also learned in the long haul not to give out  routine update information which they would chew up or get angry about no matter how nicely presented.  Even my out of area brother was in that camp . . . just could not be, she sounds good on the phone most of the time attitude.  What worked best in our case, if one of my LOs five siblings or my brother asked how things were, I would simply say, "Everything is the same, no change . . ."  And then I would quickly change the subject and refocus the conversation.  Saved SO much angst.

Later, as time went on, no one could deny any longer.  Brother visted and during the visit, without warning, Mom went off the deep end shouting and waving her arms declaring a false belief; brother took me outside and said, "What the hell was THAT?"  My response, "Welcome to my world."  Then had to explain dementia, delusions, behaviors all over again. This time, he became a believer. 

Geeze; and I am an RN with Masters Degree; but on this one thing, it seemed to much for the siblings and son to handle.  Tincture of time and choose your information carefully. If you have backup reports from scans or whatever, that can be helpful.

This of course is just one person's experience.

J.