How to have DH let family and friends know of his diagnosis

shiawase12

Hi, I"m new here (although did use this site often when helping with my Mom who passed from Alz).
THis time my DH has been diagnosed with demientia - though we haven't narrowed it down to a specific type yet. SO still early on.
MY DH is still in denial or hoping something will "fix" the mild(his perception) issues he's having.
I want our family and close friends to know what is happening, but am not sure how to approach my DH about this. I feel it should be his decision, I am in need of support and also not feeling guilty about sharing any of this with family behind his back.
Am I being selfish? Shall I wait?
I've been watching DH decline for the past 3 years. Although he is still very capable of day to day activities. As long as converstions are light he does okay. One does need to speak directly looking at him and not talk too fast etc.

trottingalong

Such a difficult thing for some of us. My DH would tell his family his memory sucked, but almost in the same breadth would say he was thankful he didn’t have Alzheimer’s. I let it go and didn’t tell his family for years. But this past year I became overwhelmed when massive fires were all around us. Everything fell on me and I was falling apart. He was confused. I happened to be speaking with a woman at the local feed store whose mother had had Alzheimer’s. I told her I felt guilty for not telling his family, who I am very close too, but I didn’t want to betray DH. This wonderful woman looked at me with such kindness and said “it’s time.” That same afternoon I called 3 of his siblings and explained what had been going on and that he enjoyed their phone calls, but rarely initiated calls like he used to. So once a month or so, siblings call and they laugh and remember various childhood things. No one ever told him I called. I felt relief and it helped me open the door to telling some of our close neighbors.

M1

I am an advocate for telling people and never had anyone react with anything but kindness; most had already suspected problems when I told them. You need the support, and your DH doesn't have the judgement to make the decision, honestly. He's not the person he used to be who could have made the decision, and that's a painful reality for you. I understand completely that it's hard to take these things over, but it's necessary.

AnderK

Its laudable to have the attitude that dementia…or any illness, for that matter, is the ill person's story to tell. But even more so, dementia is both of your stories to tell. You are very affected by this, and as you probably have noticed through your study, as well as here, that this disease whittles away at the partnerships that we have with our SO. And finally, it is not whittling, it is hacking with a big damn ax.

We all have had moments where we think our SO has clarity, and seems like things are making sense. But just as soon as those moments come, they disappear into thin air.

Tell those that need to know...need to know for him, and those that need to know for you.

It is not selfish. It is crucial. You need all the support you can get. People will surprise you, both by being there, and by not.

One last thing. Unlike a physical disease that often becomes apparent on its own, dementia doesn't always have that. People can sit for hours and talk with my SO, and see nothing amiss. My point is that you can't count on folks seeing his condition on their own.

All my best.

Kathy

l7pla1w2

When my neighbor asked me whether anything was wrong with DW, I said "Yes". Karen's father had had Alzheimer's and she had picked up on the clues. After that I gradually started telling people that were likely to come into contact with DW. Some of them even said they had noticed something was amiss, but they were afraid to ask about it.

shiawase12

Thank you so much for your insights. I do realize for my sake and his the family and close friends need to be told. I guess for some reason I'm feeling guilty, like I shouldn't be the one telling his story. Also a bit afraid that it will get back to him that I've told others without his consent and then his anger over that will make our relationship worse. I agree - it's an awful desease. Sending love to all of you who are on this journey.

dhr

I'm somewhat in the same boat. Though his family is long dead and he's never been a social animal. So …. our kids (who don't live close enough to help out) know and a couple of my close girlfriends know and that's it. It is so lonely making. Thankfully he can do ADLs right now, but gets things messed up re: appointments, etc. So i oversee everything. It gets tiring and depleting. I try to lie in the bathtub and soak every day.

SSHarkey

It’s both of your stories! You need the freedom to share, to talk, without holding it in. This disease affects both of you, along with the surrounding family. If he doesn’t want others to know, then ask them to be silent with him about it. You have a right to tell your side of it.

mrahope

I, too, have had this problem/worry extending even to now with DH in MC. I was so afraid that he would find out and be even angrier at me than he already was. As a consequence, it's only now that I'm able to tell people without a "need to know". Before this, I only told folks that I couldn't attend or participate in events because of "my husband's health problem". If that works for you, it might be a "tactful" way to communicate why you can't do certain things.

shiawase12

Thank you all again - it's SUCH a relief to get back to this wonderful on-line support.

My DH is still quite capable of most things and even conversations. I don't think most people would think he has any issues.

He had a low score on the initial testing, but of course blames the tester and her manner. "Noone would be able to repeat all the words she rattled off! A ton of them. And she asks you to draw something and then later asks you to draw it from memory! Well, if she had told me the first time that I should remember it I would have made a point to, but ….." So he's still angry and pointing fingers outward on all of it. He references this testing apppointment often and how horrible it was. "Noone would be able to do it!"

Of course I am the one closest who notices everything that others do not. I had an honest conversation with my DH yesterday and asked him if he wanted to tell the family. Was met with "What's the point of that?" He says he feels like I constantly put "dementia" as the reason for everything that happens and he doesn't want to make it the main focus all the time. He wants to live joyfully and enjoy life as much as possible now. He says he's comfortable telling folks in the moment that he can't pull a word out or something "yea, I have some memory issues.", but that's it.

Of course he mentioned that he wants dignity etc. I made the mistake of trying to explain my side and perceptions of what I'm seeing, things he's doing and I immediately regretted it as he did not take it well. "Can you understant how horrible that makes me feel? I'm not stupid! I haven't lost my mind, but that's what your expressions say to me." <sigh>

So, basically I'm left with him not telling anyone the full story and will probably have to just tell the few very close family and friends I've told to please keep their knowledge to themselves for now.

I know there will come a time when it won't matter who I tell or that I'm the one doing the telling because he won't even realize.

Thanks for being here. I so appreciate all of you.