Telling family members?

Anna2022

Hello all. As we move toward a diagnosis for DH, it's time for me to think about telling his two kids about what's going on. I'm guessing that DH would not want me to tell anyone - but his anosognosia would be driving that. Both kids are adults, living in other states and both have not talked to their father much in the last few years. I think the distance between them is caused by DH's cognitive issues, but who really knows.

I want to tell them what's happening but make it clear that I don't need/want anything from them but I do want to let them know that now is the time to talk, before it's too late. I thought I'd also tell DH's ex-wife (25 years divorced but on good terms and still connected). Does anyone have experience with this? Any suggestions of what to do or what not to do? Thank you in advance.

SDianeL

I've been where you are except my DH's daughter and he were on good terms. First thing get a DPOA by an Elder Law Attorney. Don't wait. Do it now while he can still understand and sign. Within just a few months after getting the DPOA, my DH could no longer understand documents or sign his name. So glad I got the DPOA early on. Also a POA for health care. My DH is in Stage 4-5 Dementia. He has a daughter in another state. I think honesty and directness are the best policy. Call them immediately and be honest with them. Just what you said in your post. Be sure to explain the anosognosia because if they mention it to him he will deny it. Then it's up to them. Don't expect anything from them. Let it go if they don't reach out. As far as the ex-wife I don't see why she should be told unless I'm missing something. I called my DH daughter before we had the diagnosis and told her that he was having tests. I explained his behavior and why he needed to be tested. Then when we got the diagnosis I called her back and gave her the sad news. I think by calling her early during the testing it softened the blow and allowed her to process it. Hint: make a list of his behaviors from now on because they change and you may need to give the doctors and family updates. I found that when I talked to them every few weeks, I would forget a new behavior. My husband was diagnosed 2 years ago and now doesn't remember grandchildren's names or relationships. He calls his grandson his daughter's brother instead of her son. He's having problems with finding words and so his language is affected. They need to know this. Also get the book "The 36 Hour Day" it was recommended by a nurse and it has helped me understand and gives tips for caregivers. And this forum will help you so much.

GG06

@Anna2022 It sounds like we are in similar situations. I have two older stepsons. One lives on the opposite coast and the other is about 3 hours from us. In recent years they have both pulled away from my husband - I think because of his odd behaviors. This past February when I realized there was something seriously wrong, I conference-called them and shared my concerns. Afterwards I called their mom who I have a good relationship with. The boys been incredibly supportive as we've navigated the diagnostic process (FTD) - helping when I ask, but not overstepping. I felt a huge relief once I told them. The burden of carrying the knowledge alone was awful. I couldn't sleep or eat. The grief was suffocating. My husband also has anasognosia. I'm so thankful he lacks the awareness, but as you know, it's painful to grieve alone.

Given my experience, I would encourage you to reach out to your husband's kids and ex-wife. As for what to do or not do, I would tell them what you've observed, why you're concerned, what the doctors have said, and what your plan moving forward is (even if you are unsure what that is). Then I'd listen to them. Good luck and let us know how it goes if you decide to tell them.

Anna2022

SDianeL - Thank you for your comments! DH is a bit behind your husband in the disease progression and I appreciate your lived experience! FWIW, I've seen a lawyer and gotten all the legal paperwork in place. I've got a copy of the book, 36 Hour Day. It's been very helpful. And I've been reading all the posts here since I got concerned about DH behaviors in 2021.

GGO6 - Thank you for your comments! We are indeed in similar situations. I hadn't thought to do a conference call - that is a good idea. I think I will wait to call the kids until we get the results of his upcoming MRI. That way, I'll have a bit more definitive information to share. Thank you again for your insight and lived experiences.

Iris L.

It's not exactly the same thing, but I appreciated being told by my stepson that my ex-husband was in a coma. That way, I wasn't completely shocked when he passed a few days later. We had been on good terms.

Iris

ButterflyWings

I shared the Ghent-Fuller, "Understanding Dementia" article with my steps and in-laws, since it is online and a shorter read than the 36-Hour Day, though that is an excellent resource book.

Periodically I would send them links to short pieces found here, that I thought could help them stay abreast of the stages and how the progression might manifest with DH. However, they have really not been reading it, and at this point operate as it they are in complete denial despite this being the 3rd or 4th family member to succumb to dementia.

So, in our case, you can lead a horse to water, but you can't make them drink. I have tried hard to keep them informed and to ensure they knew best practices on how best to communicate with a PWD, etc. It has all fallen on deaf ears unfortunately. They're largely awol, but problematic when they do interact with DH. At least my conscience is clear. Hopefully your experience will be better in that regard.

Anna2022

https://alzconnected.org/discussion/comment/179679#Comment_179679

Good idea to share information, especially if they are interested. Thank you.

Ed1937

Anna, I would share the news with the kids and the ex. It sounds as if there is a good relationship, regardless of divorce. We have that in our family, and the ex is still considered part of the family.