I never thought about this !!!!

charley0419 · October 9

first let me say I love this site. But after feeling sorry for myself I thought of how lucky I am to have found this group. That being said I was thinking about how many lives do you think have been destroyed by this illness to the very young. And what I mean is at 40-55 to be married and not realize what’s wrong or even realize anything is wrong has to be hard on a relationship. Yes we know now our short comings but I bet many get divorced or have terrible marriages do to fact they have no idea it’s ALZ. My point this must be very very hard on the young that develops this. I think about how do you make that young no working some young children so sad . I find myself lucky I guess to have realized at 74 my wife has. Guess there is a good part of this mess , Such a sad illness.

trottingalong · October 9

https://alzconnected.org/discussion/70868/i-never-thought-about-this

As I see more cases posted about early onset, those same thoughts have crossed my mind. To rely on two incomes (possibly) and to have children, puts an entirely different burden on the healthy spouse.

Biggles · October 9

I love this site too. It is really my daily life saving therapy. My DH has been suffering with FTD for a long time and I was so so sad, crying constantly not knowing who to turn to for help. I had a number of sessions with a physiologist but the understanding of FTD was just not there. This site is wonderful I can vent my frustration, acknowledge my love for my DH openly ask questions and see what is before me. I no longer cry everyday and I can now have a normal conversation with a friend who doesn’t understand what we are going through. I too feel like this wonderful site is full of caring family. The fears, the sadness, the crying doesn’t go away but so many others are going through it too I no longer feel alone. Thankyou my DH and I have been so lucky to have had a wonderful 53 years, and yes I feel for those in a much younger situation on this journey.

beachbum · October 10

My DH is 57 with EOAD. I began noticing memory issues about 7-8 yrs ago and cognitive about 4. He has had to quit work and driving. We have 2 kids in college ( were jr. high and high school) when changes started. I had to do all the travel ball the last few years and divorce was mentioned several times. I realize now it was the disease. The younger onset brings so many more problems to the table. I just turned 54 and am in no position to quit work. I have always had the higher income and carry insurance. Staying home to be full time caregiver is not an option and I work in surgery so work from home not an option either. He was approved for SSDI but that would not begin to cover bills without my work. Aside from the AD he has no comorbidities, he can row for 1 1/2 hrs straight, to bad his cardiovascular health will not prolong his mental. It’s not just the financial burden, our kids are young and he knows he will not see them get married/ have grandchildren. This is also very hard on our children. I just keep one foot in front of the other and figure somewhere down the line I will grieve, honestly I don’t have the time right now because my to do list is overwhelming. Both children have moved closer to home and one has moved in temporarily to help and spend as much time as possible with their dad. I am trying to prepare the house and get a plan for when he moves out. In the meantime I am trying to work as much as possible and stockpile funds. This truly is the worst disease

PlentyQuiet · October 10

I had to stop work at 49 to be a full time caregiver for DH (60) back in 2021. I'm trying to balance college tuition and daycare expenses. Using minimal daycare (as a sanity break for myself) is still expensive.

Programs that are near us and more affordable can be off limits because DH is 63 and they are licensed for ages 65 and above.

The spousal impoverishment rules for medicaid assistance do not take into account that I have had to let my licensure go (not able to do continuing ed or minimum practice hours) and may have 30 years of life left to finance once DH is gone.

So, either we do it all at home or I risk endangering my personal future needs. If the stress of taking care of a high energy EOAD spouse doesn't get me the inability to financially take care of myself later will. His EOAD will take us both down.

Hmm, I seem to be having a grumpy, mopey day

JoseyWales · October 10

My husband started showing signs when our son was in elementary school. DH was in his 40s.

To say it ruined our lives is an understatement.

ppfrmo · October 10

I guess even though I think my DH may have started as early onset, we have survived those years and have been retired for many more. I have to say it makes me realize how fortunate that I am to still be able to have him in our home and to still have some freedom. Thank you all for your uplifting support!!

mzwolcott · October 11

DH finally diagnosed EOA at 60 years old in 2019. 2021 found elder lawyer to create trust and get him qualified for Medicaid in WA state without getting divorced, $11,000. Applied for Medicaid January 2024, got it July 2024. Cashed in both our IRAs to pay off house. Well spouse allowed any income but only $63,000 in assets. DH allowed $2,00 in assets and all his income goes to pay fir care, Medicaid picks up the difference. I am down to $25,000 due to "life happens" home ownership surprises. Not a comforting feeling.

blacksparky · October 14

https://alzconnected.org/discussion/comment/225160#Comment_225160

As a spouse, are you able to keep your house?

charley0419 · October 22

https://alzconnected.org/discussion/comment/225069#Comment_225069

https://alzconnected.org/discussion/70868/i-never-thought-about-this

perfectly said

https://alzconnected.org/discussion/70868/i-never-thought-about-this

after hearing a lot of these stories of those do young to get this nitmare I guess in away lucky this hit us at age where we were retired and life alittle simpler, can there be a bright side to this nitemare???

I never thought about this !!!!

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