When to tell others of diagnosis

@Cathymt21

Hi and welcome. I am sorry for your need to be here but pleased you found this place.

I am sorry to say that you situation does have more moving parts than many others here. It sounds as though your DH isn't going to mellow into a PWD who submits to the limitations imposed around his independence easily and adjusts to being prompted around his ADLs. It also sounds like given your own health situation, you are dealing with the loss of the person who would be there for you in a caregiving and supporting role in addition to the stress worsening your own mental and physical health.

As others have said, Alzheimer's is about so much more than memory loss. You can expect to see mood and personality changes, a lack of empathy, poor executive functioning and reasoning skills fairly early on. Anosognosia is real. Early on my dad had a sense that his memory was unreliable, but he was oblivious to how these other critical skills were missing.

You will need to address the driving. With an Alzheimer's diagnosis, he may no longer be covered under his current policy and risks everything you have together if he continues driving. Call you agent today about this.

You'll need to get the paperwork in order. You'll need POAs with you as his primary agent and someone else as yours which will need to be handled discretely. A CELA is best for this. I also suggest making sure you know about everything financial in your world. I would lock down your credit with the 3 major bureaus to prevent surprise purchases. This is critical. My mom dithered on letting dad have internet access and control of their investments and he lost $360K day-trading. You don't get a do over-- that money which would have been useful for buying care is gone forever.

I would also suggest considering a move to a CCRC if you can. This can help with driving and errands and care as needed down the line. There's another poster here with some significant mobility issues @ElaineD who lives in such a place, and it has worked really well for her. You can search for some of her posts as her husband sounds a bit like yours (and my dad). I moved my parents to a very walkable 55+ community after I moved them north near me. Dad was already late stage by then and not driving and mom's losing her vision (AMD and blind in one eye) so being able to walk 0.25 miles to shopping has kept her somewhat independent but a CCRC would have made things more social for her and less work for me. Her community is gated and many of the Ubers she calls bail when confronted with the instructions at the visitors gate making this an unreliable means of getting to appointments.

As for telling people. It's not a black and white question. There's an old saying in the autism community I frequent that goes if you don't provide a diagnosis for your challenging kid, one will be provided for you-- probably a**hole. My dad went undiagnosed for almost a decade. During that time when he had dementia but didn't know it, he managed to burn through my parents' social circles in 3 states with his unfiltered behavior. He was so unpleasant that his brother, mom's sisters and their grandchildren basically ditched them. I was the only one who checked on them a couple times a year for a weekend.

My one niece and dad's brother were able to extend him some grace once they understood he had dementia. The niece, in particular was very hands-on helpful to me when I moved them back to PA-- she arranged for movers for the house in MD and went to FL with me to get the personal belongings out of their house in FL before we sold it "turn-key". Later, she gave me an entire weekend where we set up the new house so dad didn't have to be around as we packed up the temporary apartment and set up the new place. If you will need the help of others, I feel you own it to them to inform them now. My parents waited for a crisis which took over my life-- it didn't have to be that way.

Whether you do or don't share, it would be helpful if you get a therapist to work with around this. One of the first things I did when I moved my mom north was line her up with a terrific psychiatrist and talk-therapist. The therapist wasn't an idea fit, but mom did find an IRL support group that was amazing for her. I also got dad in to see a geriatric psychiatrist for medication management-- this doctor was the most important person on our team. I highly recommend especially if your DH is the sort of man who will react to depression and anxiety that present with irritability and agitation that can feel aggressive at times.

HB