New to this disease

You have come to the right place for a feeling of community! This site is a godsend for us because we all can understand what you’re going through. The advice and moral support here is invaluable. My DH passed away 3 months ago and I recently looked at my first post and was surprised to see it was almost 3 years ago. In those 3 years I learned so much - some from books but mostly from the good people that take the time to read and respond here. You’ll get through this and we’re here to help!

Welcome. There are many of us on this site in the same situation. We were thrown into deep water with no life raft. I am going to share with you what I learned and have done in this situation. Taking action to keep us both safe and secure gave me peace.

To this immediately:

Keep all information in one notebook including symptoms you see as the disease progresses. Share these symptoms with his doctors privately. Contact an elder law attorney and get your financials in order while he can still sign legal documents. Get HIPPA forms signed by your husband giving you access to doctors and medical records. If your husband is on social security, contact them and become his designated payee.
You will have to take over all finances. Get accounts, account numbers, log in and passwords for all accounts, banking, brokerage accounts, computer, phone. Most insurance companies will not cover an accident if your husband is in one- even if he was not at fault because he should not have been driving. You can get sued for everything you own. The neurologist should be able to tell you if he can still drive. There are companies that offer a three hour extensive driving test to determine if someone is capable of driving.
You will need a plan b in place in the event you can no longer care for your husband. This will involve touring assisted living/memory care facilities and placing him on a waitlist with a refundable deposit. If there is an Oasis Senior Services in your area, they offer free assistance with in home care and out of home placement. Call in home care agencies and find one or two you like. Call your local Council on Aging and ask what services are available including adult day care. Don’t wait until you need these services. By then, your stress level will be too high to deal with all of this. Have your plan in place to execute to take the stress of of you. You can’t do this alone. You are going to need help in the home and later outside the home.
Put TILE gps trackers on wallets, phones, keys. These track the item and person through the Life 360 app. You will also need to put a wearable gps tracker on him as the disease progresses. Your local police or sheriff’s department has a program called Project Lifesaver that offers gps tracking watches. They will place your husband’s picture and information in a central database to allow him to be tracked anywhere in the country if lost. 100 percent recovery rate.
Read The 36 Hour Day. It will help you prepare for what will come.
Do not argue with your husband. His brain is broken and he won’t understand that he is wrong. Accept the blame and apologize for what you never did! Try and live in his world and understand that his reality is not yours and never will be again. Structure and routine will keep him calmer.
Travel and live everyday to its fullest after this list is completed. You might have years before you cannot travel anymore.
Come back here for help and support. The people here are extremely helpful and knowledgeable.

I also am new and I am overwhelmed. He just got out of the hospital after 4 days to rule out stroke. Turns out to be moderate to severe dementia. He gets very delusional in the evenings. Short term memory gone. He also has ataxia and is a high fall risk. I am basically alone without much support except for a wonderful daughter but she has 2 small children and is busy. Like many I have to all chores now. My husband is 82, I am 73 and have hip and back issues. I go in my closet and cry a lot. I am so depressed as it seems his symptoms got worse fast. Nobody understands what we are going through unless they are going through it. Thank God for sites like this. 🙏