Life after diagnosis

lost1

I’d be interested to hear how you’re dealing with life after dx- like your personality has changed. I feel super sensitive and just different.

lfaust58

In my case, the personality changes happened BEFORE dx. My then-girlfriend oberved that I became less communicative & expressive, and more withdrawn & moody (she used the word "obilvious". My performance at work was affected & I went through several "lay-offs". It did and still does negatively affect our relationship.

After the dx, we did some research & discovered that AD symptoms can appear several years before dx.. I still experience the obliviousness & hopelessness at times, I've noticed changes in my handwriting. Planning & problem solving is getting increasingly more difficult. The strrengh & tone of my voice has changed. I am easily overwhelmed by things I used to understand clearly

Watson1

changes understanding the changes is part of the challenge and getting used to the changes with out putting to much focus on them is important. change is continuous but not generally rapid. make notes of your perceived changes so you can revaluate later. dementia has its own caotic rhythm. my alzheimers is teaching me a new dance…………..

GEH

Hello lost1,

I definitely felt differently after I was diagnosed. My first reaction was, Yes!!, I am not crazy and haven't been making this all up. It had been a three year slog of "There's nothing wrong with you. Maybe you should go see a therapist.". But that did not last long before the two by four of the diagnosis hit me hard. I think I became a little numb with the shock of reality. I cried. Felt alone and sorry for myself. So I allow myself a bit of a pity party. I don't remember how long I allowed that to go on. Maybe a month or two. But I did come out of it. My life continues, day to day. I read everything I possibly can regarding Alzheimer's, seek out drug trials and new therapies. I try to be gentle and kind to myself. I do volunteer work. Keep in contact with my close circle of friends.... Just my two cents. 😊

oaklandgiver

information on finding an experienced therapist for my wife( her request) to discuss her feelings on her early MCI diagnosis?

IngridS

I'd always had a lousy memory, but I started noticing dropped words when I was still teaching, before I was eligible to retire, but it was minimal. When I retired in 2020, at 59, I talked with my primary care doctor about my concerns. I got a baseline evaluation back in 2021. Then another in 2022 where there showed considerable decline. In the last two years, I've had another evaluation, several MRIs, a sleep test, a zillion blood tests and finally CSF results showed that it was not Parkinson's, MS, or my imagination, but the tell-tale marker for AD. I'm struggling right now with this confirmation in Sept. I live in a small town of 25,000 with no AD support groups closer than 1.5 hours away, I live with my husband who has consistently pooh-poohed my memory problems and initially denied the diagnosis. I'm still doing ok for the most part, but I worry that our marriage, which has been mediocre for years, will not withstand the difficulties. Just yesterday he snapped at me for having to repeat something we had talked about several times. He has said for years that "there is no such thing as empathy" and argues that no one does anything selflessly. I feel like I can't trust that he won't eventually walk away. In a recent argument, he said "I don't know why I'm even here anymore". I'm scared. I have no relatives anywhere close (I'm in Idaho— my family is in California, Colorado, Texas, Minnesota, and DC).

IngridS

It really depends on where you live. If you are in a big city, you can probably ask your neurologist for references; possible if you are in an ALZ support group someone would be able to refer someone. If, like me, you live in a small town in a rural state, resources are scarce. I'm still just looking for a support group, and this forum is the only thing I've found.

Dorse

https://alzconnected.org/discussion/comment/257077#Comment_257077

Very sad that your husband isn't more understanding. I was diagnosed 4 months ago with Alz, and my family have been great support. I am waiting on a 2nd opinion Dec. 2, still holding out hope for better diagnosis…🙏

IngridS

https://alzconnected.org/discussion/comment/257153#Comment_257153

Thank you, Dorse. Good luck on your second opinion. I'm exploring the option of infusions with Leqembi, but have yet to get answers about finances (my insurance doesn't cover it). So I'm in limbo for now. I didn't get my diagnosis until this fall, but I've been pursuing one since initially bringing up my memory issues with my primary care doctor in 2021. Every appointment with various specialists and testing takes a 3-9 month waiting period, so it's been very slow and expensive. I hope you have answers sooner than I have had!

IngridS

I just realized your name is Ella and not Dorse!

EllisA

I was diagnosed with MCI in 2020 MY wife laughed and said I HAD ALWAYS BEEN THIS WAY. That really hurt! now 2025 My wife passed this spring and I am living alone doing ok I have two grown children and their families in town for support and a great Church family. My executive function planning stuff is terrible i know it my memory recall is poor, i do not recognize many i should and have yo ask them to refresh my memory is really embarrassing as i have lived worked and been active in this community for over 30 years, I live in a large city in Montana and can't find any support. it is a shame Bob 5r

IngridS

Considering that aging baby boomers are setting records for Alzheimer’s numbers, why there is so little community support, I don’t understand. I’m glad to hear you have family nearby. I have a lot going on right now, as I’m staying busy with contract work, but now my husband will have to get kidney surgery to remove some suspicious lumps. I don’t know what’s coming from day to day. If it’s cancer, that’s just too much.

EllisA

My prayers are with both of you. He knows the future and will walk right with both of you please keep me up to date on the progress so I can focus my prayers EllisA bob5r

IngridS

https://alzconnected.org/discussion/comment/257452#Comment_257452

Thank you. I’m overwhelmed with how much needs to be done before I go downhill too far. I’m a collector of vintage and antique items, of moderate value. It gives me great pleasure to be surrounded by beautiful things, books, and a sense of history in my old house. I would like to give away or reserve things for my sons and stepsons, my siblings, other family and friends. My husband may or may not outlast me; he’s 10 years older and has health issues of his own. I’ve made several spreadsheets with photos of these items. Everyone lives out of state, so I don’t know how to deal with all of our “stuff”. We currently live in a house built in 1898, with 2 full stories and an unfinished basement. Any ideas on how to start? I’ve decluttered some over the last few years, but I’m not sure how to handle “the better stuff”. None of it is super valuable, but it could be resold.