New Diagnosis Support

GNGR

Hello, My husband was diagnosed with MCI two years ago and within the last year we have had diagnostic testing for diagnosis of Ealry Alzheimers. He is doing well and on medications, but my question is about sharing diagnosis information with family. I have kept this private for the first year and then finally shared with my children and family. I have only one or two friends that know. Im not sure why I feel the need to be so private in this journey, I just want to protect him and not have people misjudge. I think when you say someone has dementia or Alzheimer's we all jump to conclusions of what that looks like to us. The reality is it is a daily stuggle that might be just little things contantly, which is where we are at, but for me the lack of having someone to vent to or share my fears and concerns with is overwhelming at times. I don;t know where to turn for a listening ear or to hear others feelings and thoughts on how they handled their loved one's diagnosis. ..and when they felt it was ok toe share with others. Thank you.

G

blacksparky

Welvome, you’ve come to the right place. You will get good advice here. My DW was diagnosed with EOAD a little over 2 years ago. While she was still able to make some decisions, she decided not to hide in the disease and she told family friends and later neighbors and people at her favorite stores. I’m glad she did this as everyone knows now as her disease has advanced to late stage 5. Did we lose some friends? Of course we did but looking back were they really our friends. Even some family stopped coming by as often as they used to. Get all the help and appreciate those but in the long story, you and your LO are on your own. Always write here to get the support from those that are or have been in your shoes. ❤️🙏

Carl46

Hello, GNGR. Welcome to the group.

This is a good place to share experiences with people who understand the challenges of living with dementia. We discuss anything and everything. Your local Alzheimer's Association branch may have in-person support groups as well, and I found that to be helpful when my wife was where your husband is now.

As for telling others, at some point you will need to do that so they understand what's going on and don't judge him harshly. Some people carry cards that say "The person with me has dementia. Thank you for understanding." The card can be shown to strangers who may be alarmed or affronted by behavior.

Joyful Heart

My DH tries so hard to participate in everything that I'm doing which includes my phone calls and my dealings with people like when I sell something on Craigslist. His involvement can make things confusing so I often find I need to say something so the other person/(s) understand. But it always comes out of my mouth in a way that makes me cringe because it, to me, makes it sound like you can't trust a thing that comes out of my husband's mouth which is not the case (at least not all the time). And it feels disrespectful when I say this in his hearing. I love the idea of handing someone a card that says it all as Carl46 is doing. It saves my husband the heartache of hearing it, me the heartache of having to say it and the person we're dealing with the embarrassment of being in the middle of something so painful.

We've been telling family and friends about his condition but it hasn't changed anything for us at all. We're still on our own with no offers of help from any corner. I made sure I gave my husband's kids updates that should have told them they're running out of quality time to spend with their Dad. They've made no efforts which has broken our hearts.

Vitruvius

Early in my DW’s dementia journey, before her diagnosis, she lost some friends and I think it was because she was having trouble participating in activities and conversations. I think those “friends” might have been more tolerant if they had known of her oncoming dementia. But neither she nor I even fully recognized it at the time. Even some family admitted to me after being told of her dementia that they had been puzzled by her slightly strange behavior, like non sequiturs in conversations and seeming disinterest in their stories. I let some of her distant friends know when she stopped cards and letters so they wouldn’t think it was because she didn’t care about them anymore. Everyone was more than kind, her distant friends continued to write and send cards to her even though she could no longer reciprocate.

During the pandemic, nurses and aides did not want to let me join her in appointments but then I held up a card behind my DW’s back that just said “DEMENTIA”, and suddenly their attitude changed to one of greater cooperation. I occasionally did this at shops or restaurants when it became necessary to help her and the clerk or server started to act as if I was being manipulative perhaps.

GNGR

https://alzconnected.org/discussion/comment/249083#Comment_249083

https://alzconnected.org/discussion/comment/249084#Comment_249084

https://alzconnected.org/discussion/comment/249088#Comment_249088

Thank you so much. This is my first post . I appreciate your reply.

GNGR

Thank you Carl.

https://alzconnected.org/discussion/comment/249092#Comment_249092

I hope I am replying in tthe right place. The card you carry is a good idea. I am looking for local support groups in my area.

GNGR

I told my husbands grown kids before I told mine. They didn't really want to believe the diagnosis, heck I don't either, but they have the information. When things are difficult and I say something like…oh today wasn't a good brain day….they often make excuses and just say…oh I forget things too..or Dad was prrobably thinking this or that. My DH is doing very well and if you saw him or spoke to him you may not know anything was wrong..but I can definitldefinitely see the decline as he does. He doesn't speak openly to them about it…..he doesn't want anyone to feel sorry for him. The kids are very involved and do see us all the time, so that's a blessing. Thanks for your reply.

trottingalong

I didn’t tell anyone about my husband for the first few years. No one noticed any difference in him at the time. I felt guilty like I was going behind his back if I said anything. I eventually told our daughters and my siblings, but no one else. He knows he’s like his mom (had dementia) but still wants to believe he doesn’t have Alz. I never use the word dementia around him. I finally told his siblings and some people in our tiny neighborhood so if he was out walking they would look out for him. If you don’t live with the person and only see or speak with them for short periods, you won’t necessarily notice anything. People are also uncomfortable with the thought of dementia and don’t know exactly what to say. I have a very close friend who was recently diagnosed with Alz. She’s well aware of her diagnosis and has known for a couple of years about my husband. Her and I are both comfortable speaking about it with each other. I understand her tears and sadness for what she’s losing. She isn’t comfortable speaking with others because she gets the “oh I do that too” comments. I can talk to her about my husband in an informative, yet upbeat manner that makes her feel better and gives me perspectives I may not have had.

Arrowhead

We told family and friends very early after diagnosis. That was nine years ago, and not even one has ever turned away from us. All of them have been supportive and have offered what help they could offer. They often ask how she is doing, and then how I am doing. There have been times when they have been a great help and comfort to us. I was surprised by how many have had dealings with dementia in one way or another, to one degree or another. You may too.

GNGR

https://alzconnected.org/discussion/comment/249096#Comment_249096

So much of what you said rings true for me. The kids know, and one or two friends, but that's it. Until he is showing outward signs where others may think….something's off, I want to protect him and his dignity if that's the right word. He is aware of his diagnosis and often jokes with me saying Im losing …but for the most part we are handling life day to day. It has been 2 years since first dianosis if MCI…and EOA, but learning how to deal with it for me as his partner has been helpful. I don't argue with him or say I just TOLD you that like we did in the begining. ….its quite a journey> I use the words "that's correct"often, when he asks me repeateldy the same thing. It can be exhausting and I have to pray for patience. Thank you for your reply.

SDianeL

welcome to the place for info and support. I told all family and friends right away but asked them not to repeat it and to not to bring it up to my DH. My husband’s mother had dementia when she passed away and my husband was terrified of it. So I never said those words to him. The reason I told family and friends was so that they would understand why he was behaving the way he did as the disease progressed. Because they knew, I had people I could talk to when I needed support. I used the cards to tell people we encountered at doctor offices, restaurants or other businesses. If you haven’t done so, read the book “The 36 Hour Day” which really helped me after my husband’s diagnosis.

JulietteBee

My PWD is my mom, officially diagnosed in December. She has told NO ONE of her diagnosis. I've asked her multiple times to tell her siblings. She has repeatedly insisted there is no need to.

I did deceivingly tell her siblings and 3 of my friends, behind her back. However, I am plagued with guilt now that I've told them. If she knew, I believe she would feel like I violated her trust & I know how near impossible it is to rebuild trust once it is broken.💔

Truthfully, telling her siblings was absolutely pointless. They know I am dealing with my own life threatening, genetic condition, and literally running a race against the clock. While I am glad they never told mom that they knew, I thought they would offer me a listening ear and a little emotional support. Instead, I am left to tend to both our healthcare needs, manage mom's entire life, and deal with a lot of personal loneliness & anticipatory grief as an only child.😢

Like you, I feel highly protective of mom and do not want others to treat her differently or unkindly.🫂

Apparently my mom has excelled at "showtiming" (never knew that word before) so if I shared her diagnosis with others, they may not even believe me. Her showtiming does leave me questioning my own sanity, as when she is at church or on the phone with her friends, she sounds amazingly appropriate. When she gets off the phone, or gets in the car to leave church, I see that my recently "lucid mother" has once again disappeared, leaving behind, her "loopy" counterpart. 👀

You will know when is the right time to tell others. I trust we will feel it in our gut.🙏🏽