Who Do I Tell?

LauraCD

Actually I want to tell everyone. I want to because it explains a lot. I want to because I don't want to feel alone. I want to so those that care will understand that NOW is important. I want to tell some strangers he deals with so they'll have more patience. But there is a stigma about it isn't there? I've already experienced it. I had to tell some people that are part of an organization I volunteer for as I had to withdraw from some commitments because of DH's diagnosis. And it was interesting seeing the different reactions -- some compassionate and caring while others were obviously uncomfortable and couldn't wait to end the conversation.

I so want to maintain my DH's dignity but at the same time I want to explain my own "distraction." No one knows what I am dealing with and there is a part of me that wants to scream "Have you any idea what I do in my personal life? How much I'm responsible for? What I have to do now completely on my own? Do you know what I've lost already?"

We told our adult children (two are 38, one is 40) soon after the official diagnosis. I carefully explained what I now know about Alzheimer's and how much is unknown. I stressed that each individual's experience is different so we do not know what the future holds even with an explanation of what has been happening for the past 3 years. Although the kids really haven't seen what has been happening the last years as they have their own lives and children and jobs, etc. to deal with, they didn't notice anything until this past year. Now, they understand some of what the forgetfulness, repeating and agitation behaviors are from.

And each of them is reacting so differently. One daughter is really stepping up and that is a surprise as she had had the most "issues" with her father prior to this. Our son seems uncomfortable with talking further about it. When my DH and he talk it's about baseball and not much more. Maybe it's a "guy" thing? And the other daughter is, the one who has always been considered the most compassionate (she's actually a therapist), the most empathetic is reacting in a completely unexpected and frankly disappointing way. She is minimizing it and telling me I am "catastrophizing" the situation.

He has three "best friends," two from high school and one who "grew up" in the corporate world with him from the time he was in is early 20's. One high school friend calls him just about every day, the other high school friend didn't call when he found out in the beginning because "I'm just not good at that kind of thing" and then (he's only been in touch twice now) it's usually to complain about his own medical situations. And the third friend, the corporate pal is planning on a visit to him soon, So there too, as I expect with any situation like this, reactions and responses will be different. That I can handle and it's actually fascinating when I have time to explore it.

But, I'm still left with who else do I tell and when. That is very complicated isn't it.

Thanks for listening again.

Ed1937

Laura, we "get it". When my wife was diagnosed, I called our children together, and I explained what was happening, and I told them it was a fatal disease. I told them everything I knew about it.

Word got around pretty fast, and some people I didn't think knew about it would ask me how she was doing. But just about everybody was compassionate. I never held back on telling people when I thought they should know, but I didn't exactly put big signs in our yard explaining our situation.

We had eight living children, and one of our boys didn't want to talk too much about it. He wasn't in denial. He simply couldn't handle the bad news.

Having said all that, this is one more case that falls under the "personal choice" category for all of us. Just do what you feel is best for both of you.

Quilting brings calm

I suspect the empathetic daughter is having the most trouble dealing because of her nature. Let her come to an understanding in her own time. I suggest pointing each of your offspring to this forum. If they prefer Facebook, there are several private groups there, but not true anonymity. Purchase a copy of the book ‘the 36 hour day’ for each. Also there’s links on the forum here to a free document ‘ Understanding the Dementia Experience’. Those resources will give them needed info without going through you to get it.

In terms of telling anyone else, first get your legal documents in order / that’s easier to do without public knowledge of the diagnosis. Then take the POA to your bank, and financial institutions to get things into your name.

Then let all his medical, dental and eye doctors etc know.

Ed1937

Here's the link Quilting mentioned https://www.smashwords.com/extreader/read/210580/1/understanding-the-dementia-experience#hlangandcommun  

RickM

My wife, myself, and the rest of my family had been dealing with the dementia of my parents since 2017. By 2021 I had an official diagnosis for my wife. I've been up front about her cognitive challenges from even before her diagnosis. For me it has been mostly positive as friends and family have been understanding and, even, somewhat supportive in a way that they can. Some people will have a hard time dealing with your husband's diagnosis. It's scary! Personally, I think it's important to share your experiences with others, but, as you are doing, try to get a handle on how much they can handle. I'm always worried that I talk to much about it. I don't want to make conversations with my family and friends all about how much I suffer. Yikes!

So far it is working. My relationship with her family is now closer than ever. My family is devastated to hear that our time in dementia land is going to continue and continues to support one another. Our son has been supportive from the time he started to notice her decline. Lastly, and this is the most remarkable to me, given the experiences of so many here, is that my wife seems to understand what is going on and presents no behavioral issues or unusual difficulties.

So, as Ed said, it comes down to "personal choice". I'm in the "tell everyone" camp since it has worked for me. But whatever choice you make, make it one that works for you. I have a rule of thumb when it comes to decisions in Dementia Land: No matter what you do it's gonna suck. So my goal is try to make it suck a little less.

Best wishes,

Rick

Denise1847

I get what you are going through. Some people are great with asking and they are kind. Others don't know how to handle it. We have had friends call and say they were going to visit and never had. I have shared the diagnosis with everyone so that they will at least get the difference in behaviors and not be asking questions etc. Also, neighbors should know so that he is starts wandering, they will be able to help.

GothicGremlin

Laura -

You're so right about NOW being important. When my sister was first diagnosed, two of the best pieces of advice I got were - 1. whatever it is you want/need to do, do it now. Want to spend time with friends? Do it now. Go on a trip? Do it now. Discussions with friends/family? Have the discussions now. Do not wait. 2. Today is the best day your loved one will have. I've always kept that in mind when I make decisions regarding my sister. So yeah, telling people now so that they can process it all is generally a good thing, I think.

There's a stigma, to be sure. I've seen it too. I always told people on a need to know basis, whether I'm talking to a friend or an acquaintance, or a stranger. My decision mode is close to @RickM - things are going to suck no matter what. But maybe I can make things suck a little less.

You never know who's going to step up and who won't. I suspect @Quilting brings calm is right about your daughter. It can take a long while to really process this type of diagnosis. In my case, my brother has mostly been MIA, and most of our family have not visited Peggy in memory care. But, Peggy's two best friends, one from kindergarten and one from college, have been steadfast. They've been amazing through all of this.

harshedbuzz

@LauraCD

This is hard stuff. Telling/not telling is certainly a personal choice and there is no one-size-fits-all strategy.

IME, you can tell people, but most folks who haven't lived this have a preconceived notion that dementia is limited to memory loss only and can't appreciate how it impacts things like moods or executive function so the patience you're seeking may not be forthcoming even with a reveal. Also, many people don't realize that you've been given a terminal diagnosis and that you are currently processing that information along with the caregiving. Telling can also lead to people asking stupid questions like "does he still know who you are?" or minimizing the impact because their experience with dementia was a grandparent from whom they were shielded because of age or distance.

There's also the reality of a PWD who showtimes like it's his job when visitors appear leading his audience to judge you for whining about how difficult this all is because he seemed really with-it when they saw him.

You can't dictate how others react or don't to this information. Dad's friends abandoned him; some before the diagnosis for unfiltered behavior and some after with dementia as an explanation for that same behavior. TBH, I don't blame them. He wasn't easy to be around.

Your "kids" will come around or they won't. TBH, it sounds like you have 2 out of 3 supporting you which is pretty good. Your son's carrying on as "normal" about sports may be just what he and dad need from each other-- it's early days. And it sounds like your one daughter is pragmatic and has your back. Perhaps your other daughter will come around. I hope so for both your sakes.

HB

CorrieG

I tend to 'overshare' and you're right, I just want to feel less alone. Just the general announcement- "my husband has dementia," I told our family and close friends and the next door neighbors in case he shows up in their yard. I want people to be prepared when they seem him and also to visit now, while he knows who they are. A few people became condescending or avoided us but I figure we probably don't want to deal with those folks, anyway right now.

I only truly confided about our day to day struggles with my sister, mom, and my DH's sister and mom. I wished I hadn't confided in my mother in law but otherwise, these people have provided me with the love and support I truly need.

Except our daughter, who I just posted about. Her complete 'non-reaction' concerns me but I would never have made the decision not to tell her whatever her reaction was. I appreciate everyone's comments to you about your children.

Otherwise, I agree with the 'need to know basis,' but it's amazing how many people 'need to know.' I made up cards to give out that say he has dementia so when he's causing a hold up with our waiter or cashier, they will be more patient and understanding. So far, all of those people were great about it!

Lgb35

My DH has a diagnosis of MCI at this point. He just turned 60. He is still working and has made me swear to secrecy. He feels like if people know they will treat him like he is stupid. He is already forgetting people in our lives that we don’t see often including brother in law’s. I have told our adult sons. Both our moms and one of both our sisters. People I trust to not let him know I said anything. I just don’t feel right keeping it from his mom. We are so new to this process and it is terrifying not knowing how this is going to go.

LauraCD

Yes, it is so hard. And I find it hard not to be able to tell some people because I want them to understand and make room for what he is going through. Everything about this is so very heartbreaking. Somehow I'm (and you as well - all of us) are trying to make the unimaginable manageable. I understand what you are experiencing.

toolbeltexpert

Laura do I get it. I tell lots of folks sometimes even a stranger, I have found so many folks who have had someone they know or they are going thru this themselves.

I learned something when I did some training for disaster response. Being the first team in after a natural disaster besides the logistics is the folks who just went thru this trama, losing everything in the blink of an eye sometimes, In the training we were taught that even though the primary goal was to be hands and feet, we needed to be the ears to hear that story,it's part of healing.

You have been and are going thru a trama, you need to tell it often its healing for you, it validates your trama.

We all do. Hugs to everyone.

LauraCD

Thank you for that. It really helps.