Caregivers: Early Onset Alzheimer's, diagnosis age 19 to 65

I was asked to start a feed specific to Early Onset Alzheimer's.
https://connect.mayoclinic.org/discussion/caregivers-early-onset-alzheimers-diagnosis-age-19-to-65/

Hi, How did it go with Mayo? I have no idea why it took me so long to see this message. We are 4 years into the disease process and beginning the severe stage. It's been a cruel and heartbreaking journey. We saw Dr. Graff-Radford and in a nutshell, he said, there was nothing he could do and to go live for today.
Getting the correct diagnosis is often difficult and drawn out. I hope you have some answers by now.

Hi Milomiles, Lorenzo's House and Alzheimer's Association are supposed to have some good virtual groups for us. My greatest resource has been a private Facebook group for females only with spouses/partners who suffer from early onset, "Early-onset/Young Alzheimers Female Spouses Caregiver Support Group" Because it is private, I can not link you. You have to find it and go through the vetting process to get in. There is a lot of wisdom there. The administrators stay on there toes to make sure only female partner caregivers get in - no men, no family members. It is a very specific point of view.

My husband fell 2 times within 12 months. In the hospital he was drugged with the wrong drugs, end result was dementia. At an early age he was an invalid. He could no longer walk or feed himself. Medicare: he was too young for. Nursing homes and caregiver agencies were only interested in money.
I hate to say how much I went thru only to have him die. I feel blessed I was able to write those checks. I still feel responsible because I told him he needs to be checked out. Some neurologist from Egypt tells me he’s only vitamin deficient, which was a bunch of crap.
That community hospital is out of business, and another one in its place.

Hi Milomiles,
Sorry I somehow missed your response.
If you would still care to chat privately, as we seem to have things in common, I would like to know how you are doing.

Husband diagnosed at 57. We’ve been married 38 years this March. He was just diagnosed with mild dementia with more testing to confirm early onset Alzheimer’s. We adopted our granddaughter at birth (now 4 1/2), another little girl (now 3 1/2), and her brother ( just turned 2). Our 30 year old daughter ( 1 year drugs free ) just moved in.
I am a teacher (29 years now). What is God’s plan? I can’t even begin to wrap my thoughts around any of this.

Dear @brn2tch

You two clearly have big hearts. That is a fabulous start.

Let me paint the picture of how I see your life unfold gracefully. I'll omit the obvious obstacles at first.

Love will carry you through. I have been on his early onset journey with my husband for about 16 years. I had heard that EOA progressed faster than others, but I can honestly say that these have been wonderful years of our life together and for me.

While there are no guarantees, if your husband is a kind man, then he is likely to be a kind person going forward even as he becomes more dependent.

Your three generation household will be a source of support, distraction, and joy.

It is early, and you have time to learn and make the adjustments you will need to make. In just the six lines of your post, we can already see that you are a very, very capable and realistic person. Recognize that you have the skills to make your way through this. You do not need to make sense of all of it now.

There are other posts on this site that are similar to yours-- people getting the first diagnosis and needing help in getting their bearings. Part of a response I gave to one of them included this:

"There is an infinite number of things to know. Aside from some very practical matters, most of them are not urgent. What is essential is to start finding a way forward that is full of more life and joy than it is struggle.
There are many paths to that. I don't presume to know which of them are right for you: But I can assure you that more than one exists. That is the key thing that I want to offer you in this little post: The deep certainty that these medical findings are not a sentence, they are signposts that tell you that you are on a different journey that is full of possibilities for growth and fulfillment. "

Now let's talk about the big issues:

You are already a scarce resource and over time your key partner in shouldering the loads you have assumed is going to become a source of need as well. This is not an exercise in "How am I going to do all of this?" You should not try. You are too important to risk having a major health incident of to sink into a dull or dark mood through over the top overwork. Start a list of categories of sources of support. Think way outside the box. Yes, friends and family, but also city and county services and non-profits and paid caregivers and other families with persons with dementia, support groups, AI agents, robotic pets... Once you identify those categories you will automatically tune in to them and can add to those lists. Start using friends early. Bring them into your circle -- this will make sure that they are comfortable with your husband all along the journey. It will also make them aware of the needs and therefore more able to be proactive.

I'm going to leave it at that for the moment. I am very sorry that life has presented you with so many unanticipated turns. We are here for you.

@gail60 my husband just had the biopsies. They say it takes 6 Weeks to get results.?

We are new to this group, and I did post once, but didn’t get a connection, which is what I’m looking for. The “hugs” don’t help, pardon my bluntness.

Today is our 38th anniversary. We’re 57 years old and have 3 YOUNG children under the age of 5. He was diagnosed 10 days ago with dementia…more tests coming including MRI this Friday. Neurologist is leaning toward frontotemporal dementia and concerned about how fast it’s taking over.

I am a full time teacher. I have absolutely no idea how I’m going to face this challenge alone.

@brn2tch I read your note about "hugs" don't help, pardon my bluntness. When I first started on this site, I received the same thing, but many of those people, started posting value-add information. Just give it time. You're young/ 3 young children, I'm sorry you are having to deal with this at such a young age. the world as you know it, will change, you know that, because you'll be just like every other caregiver. on this site. In your case, you will need onsite support, maybe sooner than later, depending on how far into the dementia he's in. As for your teaching job, only time will tell what happens and how quickly it happens. I'm sure you have good insurance. So start looking into the financial and medical aspects of things, so you know what's he's eligible for, and how that can help you navigate through this. I was so much fear in the beginning with my husband's diagosis (MCI) but I'm finding getting more educated on resources, what's available, etc. makes me feel better. Hope this helps in some small way.