Young onset early Alzheimer’s

Dawn333

My DH was diagnosed last year with early onset Alzheimer’s. He is 58yrs old . Retired police officer the last 5 years . He was working as a school security police officer after retirement .He was told to quit work on go on disability . Well , 14 months later denied disability twice and a court hearing coming up December 10th .
This has been emotionally, physically, mentally, and financially a devastating experience.
We have 3 children 2 in college , one son working .
I have been holding down working and running the house . My husband still functions pretty well but judgement poor , apathy , forgetfulness. I’m very scared of how bad this is going to get . He is on mematine 10mg and it has helped but I’m so scared of when it stops working .
My stress level is starting to work on me now . I cannot afford to get sick .
I have looked for early Alzheimer’s support groups and they just don’t exist ! I feel so alone and tired . I still have kids that need me .
I am still in shock that our future has changed forever .
I try to take this day by day but it’s not easy .
I was informed young onset progresses faster . So far the mematine has been pretty good . But he is really starting to make me crazy when his judgement is poor and he just isn’t grasping certain realities . I don’t know if it’s the disease or him .
Please if anyone can relate to this I’d love to hear from you . I feel so alone . No one I know can relate to this because it’s not common at this age .
I would love to hear from anyone living through this .
I know there are many of you living through this . It’s unfair to our spouses , our kids and us . Life sure has a way of surprising us and not always in a good way .
I have faith and God carries me through but I could sure use some friends .
Can you be my friend ? Maybe we can help each other .
Thank you for reading my long post .

BPS

I have been told the early onset progresses faster but my wife was 62 and it has been over 10 years since she was diagnosed. She is in MC and on hospice but she has also had a stroke which sped up her decline. I agree that you getting sick would add extra stress so be sure and take care of yourself first.

Goodlife2025

@Dawn333 Welcome to the club nobody wants to join. There are a few of us on this site dealing with a LO with early on set. Keep coming back here and you will find amazing supports even as we are each in our own weird existence. My DW is only 50 and is late stage 5 so we have been dealing with this terrible disease for several years now. A few things I have learned a long the way.

*It is okay that you are freaked out and not certain which direction to head. It's all overwhelming and right now you have had the legs kicked out from under you. Let yourself take a breath, keep coming back here and you will be able to tackle the "to do" list in due time.

*Yes, statistically, early on set does often progress faster than a more traditional dementia BUT my reality is when looking back, DW actually showed signs as early as age 38. So that would put us in year 12. You can read anywhere from 8 - 20 years and either way that is a long time to be a caregiver and especially true when you weren't done building your life or retirement plans. I have found the DBAT very useful in determining where we are on the journey and it gives me general idea of what's next. Link here.

https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf

*Not sure where you live but many of us on here are living in rural areas without in person groups available. I am in western Colorado and the closest person to us with true early on set is over 200 miles away. At first I was quite caught up on finding "our" people but in the scope of this disease we are the reluctant pioneers and there are very few resources geared toward early on-set. However, You may find more supports with those exploring the infusion injections as some of these participants are also early on-set.

Hang in there, come here often, it is a lifeline for each of us.

Timmyd

ALZ diagnosis should fast track social security disability application. It sounds very curious that his was denied. If you are not already doing so, I would suggest you retain an attorney to help you navigate the SSDI approval process. The application for my DW as ignored/denied multiple times. I then retained an attorney and the exact same application was approved.

blacksparky

I agree with Timmyd regarding SSDI. I applied for SSDI for my wife about 6 months before the actual diagnosis. We finally went to Mayo Clinic and got the official diagnoses. I then made an appointment with our local social security office and presented the Dr’s diagnoses of Alzheimer’s. In less than a week, she was approved and we got a check covering the time since she couldn’t work anymore and then her monthly checks. Try that first maybe and if that doesn’t work definitely retain a lawyer. Unfortunately even my wife was approved, she had to wait 24 months for Medicare to kick in. Hang in there and keep coming back to this forum. DM me anytime if you just want to talk or have questions.

Maru

I hope that you don't mind if I say " oh, you poor thing," which is what I would say if we met in person. You are very loaded down with worries and responsibilities. I don't have any words of wisdom. I just wanted you to know that my heart goes out to you. May God give you the strength and wisdom to carry this burden with love.

H1235

Welcome. If you haven’t seen a lawyer for for DPOA, will and living will, I would try to do that soon. Keep in mind that some investment companies (for a 401k or IRA) may have specific paperwork they want filled out vs just accepting the DPOA. I believe social security is the same way. Getting these in order now may save you a headache down the road. I would talk with your doctor about all the stress you are under. Stress can snowball into other health issues. I absolutely hated the idea of taking anxiety medication, but I’m glad I finally accepted that it was necessary. I will attach a few resources I wish I had seen in the beginning. So sorry you and your family are going through this?

understanding-the-dementia-experience.pdf

DBAT.pdf

Anosognosia and Dementia - AgingCare.com.pdf

https://iona.org/therapeutic-fibs-ok/

https://www.helpinghandshomecare.co.uk/care-advice/what-is-show-timing-in-dementia-patients/

https://www.medicalnewstoday.com/articles/confabulation-dementia

sandwichone123

My spouse was diagnosed at about that age, and went into memory care just after his 60th birthday. He died at 63. I will second the suggestions above about seeing an attorney about DPOA, healthcare POA, SSDI application, and planning for Medicaid.

I recognize that seeing an attorney is expensive, but with Alzheimer's, as you have seen, money is on a whole different scale. Seeing an attorney can save you tens of thousands of dollars, improving income with SSDI and decreasing costs with DPOA (which can prevent him making some poor decisions) and Medicaid. If you need to continue working, you may need to place him in a facility that accepts Medicaid at some point.

One thing I always point out when there are children involved, even college-age kids, is that they deserve a safe place to call home. There is only one trajectory with Alzheimer's, but the kids deserve a home base to return to when they need to. You should also be aware that often someone with Alzheimer's will target one of the kids, so be on the alert for that as well.

I don't mean to be a downer, but younger onset is fraught, and being prepared gives you a better chance for better outcomes.

AlekoW

Those SSDI attys are gold. We were stunned how fast we were approved. Here’s to you getting that ASAP. It’s a hard road you (we) are on.

Jgirl57

Welcome and so very sorry you had to find this forum. Keep fighting for the disability claim. It is very hard when our health care system relies mostly on insurance from your job and then you can’t work and can’t pay your premiums. There are several members here that are caring for loved ones under 65. So very sorry . My husband was already drawing Social Security and on Medicare when diagnosed so that has been helpful with medical bills. Keep reading and posting . (((Hugs)))