New(ish) Diagnosis and EOAD

Jolie

Hello, I am a 48 year old wife whose 58 year old husband has recently been diagnosed with dementia. We are awaiting PET scan and more testing (always more testing) for a "type" of dementia. We have 2 children (21 and 18) that are in college. I started noticing symptoms a year ago, and then in February of this year he had some health issues that seemed to exacerbate the memory loss. I have pretty much been in denial that it is Alzheimer's until I saw him through clinical eyes at the last neurology appointment.

My heart is broken - I am a speech language pathologist, and spent many years focusing on dementia management. Now I live it. I am exhausted, and have realized it is because I never get to be "off." I work in a school all day doing speech, then I go home and do "therapy" until we go to bed. He has been unable to work for a year now, and we are still waiting on the disability process.

If I were clinically rating him, I would put him in a level 3 with traits of level 4 beginning.

I have so many questions, but I am afraid to ask a lot of them, because I think I know what the answers will be, and I don't like them.

How are we supposed to do it all, and keep going with full-time jobs and families?

Why did this happen to us? I always try to find the good in things, but I can't find anything positive about this situation at all.

Thanks for reading. I just needed to vent.

KathyF1

Jolie, I remember the shock I felt too in the beginning. And disbelief, my husband was about 66 when it was apparent he had Alzheimer’s. He’s 70 now. I’m 62. We’ve been married just 13 years. My first marriage, not what I expected for my future. So our stories are different but I know still how you’re feeling. It’s incredibly scary. You asked how to find the “ good” in this, there isn’t anything good about the disease but I’ve been surprised how it’s brought my family together. My mom and sister have stepped up to the plate and we are actually moving to be near them so I can have help. For me I came to a place of acceptance that I must do my best to care for him and that is the “future” that God wants for me now. I find myself looking to God for my strength much more than I ever have. And one day at a time, it’s impossible to plan out everything. I’ll keep you in my prayers Jolie!

M1

Welcome to the forum Jolie, i am sorry you are facing this at such a young age. Good that you have the disability process started for him. Have you met with a certified elder law attorney regarding powers of attorney and financial planning? He is likely to need memory care at some point, and you need to be able to keep working for your own financial and retirement security (and your mental health). Which may mean placing him in care or finding home help sooner rather than later.

I am a physician and know the feeling of continuing to work when you come home. However, it's a tendency i would resist if you can; you are not his therapist but his loving and devastated wife, and I would want to maximize any good time you have together while you still can. Would probably help you emotionally at least if you can step out of the therapist mode when you get home. May help him, too-if i had to bet, id bet he doesn't want you to be the therapist in this context. What that will look like from a practical standpoint is up to you i guess.

I wish you well, it is a long road. The sooner you get your legal and financial ducks in a row the better you'll feel. Think hard about bucket list plans-my partner and I took a couple of wonderful trips in 2019 when she was stage 3/4, and those are precious memories to me now.

tlecroy

Jolie,

I am new to this too! It is definitely overwhelming at times. Being a full time caregiver and working full time is alot. But work is one of my happy places and my grandkids are another happy place.

Last night is the first time I vented on here and it felt good. A lot of good information from comments.

LJCHR

You and your DH are so young. We are retired and the demands of a caretaker are so demanding. I can’t imagine if I still had to hold down a job. I guess you can do what you have to do.

This is a wonderful place for support from hands on experienced people.

I’m sorry you had to come here but glad you found it. Prayers for you and DH.

FTDCaregiver1

Hi Jolle- Sorry to welcome you to our FTD under 60 crowd, been caring for my DW for over 6 years now, she's 60 and I'm 58. Been through a lot these past years, getting benefits (final appeal won), estate planning, diagnosis w/multiple MH placements and failures and Memory Care Placements failures, on and on, enrollment in our local PACE program (godsend!!! for financial help). Watch alot of YouTube girl! lots there on FTD, currently I'm holding strong and caring for wife at home with help from my local PACE program. Have a solid plan with help and working it.

qgc

I wrote a very similar post a few weeks ago (with the exception that my kids are younger and still at home -- I am 48, husband is 52). I don't know how we are supposed to do any of this. It seems impossible. There are some places out there for help and resources, but I've found that you have to be persistent (and of course it only goes so far). Try https://www.wearehfc.org/ or https://lorenzoshouse.org/ and don't forget about your local Alz association, you can call them and do a big gut dump and they will be kind and caring and helpful (so I've heard, haha).

Brokenhearted in Illinois

Married five years, DH was diagnosed 2 years ago. At the age of 71. I was 63. Finally had to quit my job To care full time as he has had a very rapid decline. I did not have an understanding boss which caused so much more stress. I would love to return to work but have not figured out a way. We do not have children Make sure to take care of yourself as this disease takes its toll on you more than you realize.