Spouse

shoticey42

My husband was diagnosed with dementia yesterday and I’m not sure how to feel about this. I am 43 and he is 65

NYCalz

Dear shoticey42,

I came on to search the discussions before starting my own thread. Instead, I read your post and was compelled to reply. I am so sorry that you and your husband have been dealt this awful, unfair, and dishearting diagnosis. My husband is almost 67 and I am 53. Our journey began in 2022 and the ups and downs of it have been surreal.

This platform is a great place to come to for information and support. My suggestions to you are these:

1. Learn and dig for information. This disease throws you into “on the job training” and none of us were prepared or knew how to handle the innumberable changes in our loved one, or how to handle challenges, and logistics.
2. Each person is different (both the person w/dementia and the caregiver). Never compare yourself to others or how your loved one is doing.
3. Be in the here and now. Some days are going to be good, some ok, some bad, and some will just crush your heart and soul. Keep staying right here and now.
4. Reach out here or social media groups and profiles of others in our position. It’s helpful to pick up tips and to remind you that you are not alone in this; time and time again, I read about others’ experiences and it just blows my mind to see the similarities to what I’ve experienced.

I send you a hug to give you comfort and strength.

H1235

Welcome. Sorry about your news. One of the most important things todo in the beginning is see a lawyer. Don’t wait. Learning all you can may will help. I will attach a few resources.

DBAT.pdf

understanding-the-dementia-experience.pdf

Anosognosia and Dementia - AgingCare.com.pdf

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

Michele P

https://alzconnected.org/discussion/76573/spouse

Welcome. I am so sorry you are here with your husband’s diagnosis. I am giving you what we were told to do:

Get a consultation with an Elder Law attorney immediately while your husband can still sign legal documents. Get Hippa forms signed for all of his doctors. Make sure that there is a geriatric psychiatrist on your husband’s medical team to prescribe medication as needed.
You will have to take over all finances. Make a list of all accounts with log in and passwords. Do the same for any bank or brokerage accounts, phone, computer.
Keep a notebook with notes of all doctor’s visits, information you find out after the calls you will make to local agencies, new symptoms you are seeing as the disease progresses to help determine the stage he is in and what needs to be shared with his doctors.
Call in home care agencies and find out the services they provide and rates. Eventually, you will need help in your home caring for him. Get a plan b in place in the event you can no longer care for him. This involves touring assisted living/memory care facilities and putting him on a waitlist with a refundable deposit. Call your local Council for the Aging and ask what services are available including adult day care. This is extremely important at your age if you are working and can’t leave him alone at home.
With this diagnosis, he should not be driving. Most insurance companies will not cover an accident, and you can get sued for everything you own.
Buy TILE GPS trackers and place on phone, wallet, keys. It tracks the items and person through an app. Buy the book The 36 Hour Day. It will explain the disease and how to prepare for what is coming next.
if there is a Mayo Clinic near you, ask for a referral to The Habit Program. It is an excellent program that helps the patient and caregiver. They will train both of you on the online brain game program Brain HQ. It helps build new neurons in the undamaged part of his brain.
Don’t argue points with him. His brain is broken, and his reality will never be yours again. You have to live in his world. Don’t assume that what he tells you is true. Verify everything!
if he is a veteran, let us know. People here will tell you what to do.
Travel and make a lifetime of memories now.
Come back here for help and support. The people here are extremely knowledgeable and supportive. We will help you. ♥️

AlekoW

Buy TILE GPS trackers and place on phone, wallet, keys. It tracks the items and person through an app. 

Want to echo this in particular. Our adult kids bought their mom an Apple Watch (Series 11, I think) to track her health data, any falls, loss of consciousness, etc. (We've had some non-focal events that kicked off when I found her unconscious and presented as a stroke—ruled out, thankfully). I can leave her at home when I need to run out and do things. I wouldn't dare before. Essentially, all her health data is shared with me and our DD (she's in health care & studying to become a P.A.). We put a medi-alert tag on the wristband with her name and contact name & number. If she falls and doesn't move for more than a minute, it puts an alert on the screen, then, if the doesn't respond it calls 911, me, & our DD immediately/simultaneously. We checked with our local paramedics (who recommended the whole thingy).

Anyway, the thing that may be more applicable to the proactive acquisition/use of TILE & tracking devices is the AppleWatch (& her phone) allow us to track her should later stages bring along the wandering issue. She has an AirTag in her bag & another on both her housekeys & in her wallet (she no longer drives; car keys are sequestered just in case). FWIW, TILE has a skinny version thinner than an AirTag—our DD has one in her wallet because she's notorious for "misplacing" it. The likes the thin size.

It's peace-of-mind for me & for our kids right now.