Young diagnosis of early onset ALZwgat to do first?

Hi @bntconley. Welcome to the best place on the 'net for these questions. Sad, lost, and angry is par for the course. Realizing you need a path is a win.

The first priority is to get paperwork in order. It's good to see a certified elder attorney, if there are any in your area. Even though you are not elders, these are the folks that know about laws surrounding Alzheimer's. You need a Durable (not springing) Power of Attorney (DPOA), a POA for healthcare. Some people find it's best for the healthy partner to meet with the attorney first.

Alzheimer's is fabulously expensive, and more so when you are young, so the cost of an attorney, while perhaps not something you would normally spring for, is a bargain in the scheme of things. Many elder resources are not available to folks under 60, and your retirement savings may be quite young as well.

Do you have children? Depending on their ages, keep them in the loop in an age-appropriate way.

Learn what you can. On line Tam Cumming and Teepa Snow are good and 36 hour day book is good, get your legal stuff done, but don't only learn, enjoy what you can. There are hard time ahead so prepare but don't forget to enjoy the current times. They will be "the good old days" latter.

Welcome; so very sorry about your DH( Dear Husband). As noted above, definitely start process for his Social Security disability. Try to breathe through and take things one day at a time. (((Hugs)))

Welcome. You have been given great advice. I will just add a few resources that might be helpful. This is a lot.

This is the staging tool most commonly used on this site.

I agree that you need to see a lawyer, but this might give you enough information on Medicaid so you can go in with some good questions and a basic understanding (it’s complicated).
https://www.medicaidplanningassistance.org/medicaid-eligibility-income-chart/

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

In addition to all the above, have a discussion with your LO about living with a terminal disease, which AL is. I only suggest that as it may help ease your guilt when you start having to making hard decisions like which medical interventions to use or not use. My DH told me very clearly that he did not want his life extended if he had dementia. He now is in the dementia stage and I may be facing decisions such as shall he go on cardiac meds. I already know what he wanted when his brain was still functioning well. I hope that will help with whatever guilt I may have.

In addition to all the legal and financial things above, get a good neurologist if you don't have one. There are two new drugs out that slow the disease progression: Leqembi and Kisunla. The neurologists also often have good access to other support services you might need. For instance ours has social workers on staff, support group, clinical trials, and enrichment programs. And, as everyone else emphasizes, take good care of yourself!