When to tell others of diagnosis

Cathymt21

My husband was just diagnosed with Alzheimer’s this past week! It was confirmed with MRI, EEG, and Lumbar puncture. He’s been having symptoms for a couple of years, but it’s been getting worse over the past 6 months. My parents have even noticed the changes, and I’ve talked with them about it. But since the diagnosis, my husband refuses to tell Anyone! And, he has instructed me to keep my mouth “shut”! He doesn’t want me telling Anyone that he has this disease! I already have my own health issues, including anxiety, depression, legally blind, bladder disease, and the list goes on. So now my stress level is through the roof which exacerbates my other problems and increases my pain! I need to tell my family about what’s going on! How do I get this through His head that it’s important that family is notified of his diagnosis? Including our kids! They are going to find out at some point. Any suggestions? Btw, he is super stubborn, ex Navy seal, and German! Not easy to reason with before he got ill.

jfkoc

Navy perhaps says it all.

I do think your husband's wishes need to be respected until it is necessary to share the diagnosis. Telling others is usually not helpful in the least.

Can you just let it go for now as an increasing memory problem?

Iris L.

How are you doing for money? Is he retired and receiving a pension? You will soon need to organize your finances for long term care. I suggest that you start gathering your financial data and making plans for the future. There is quite a lot of preparation to be done.

Iris

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harshedbuzz

@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

SDianeL

so sorry you are going through this. I've been there. My DH, a Vietnam Vet USMC was diagnosed 2 years ago. I told our family without his permission. I told them it was just FYI and not to bring it up to him. You need to do that for your sake. You will need help. He doesn't know he has issues. You have to take control. 1. Go to a CELA attorney and have a CPOA and medical POA now. Don't wait. Within 6 months my DH could no longer read & understand documents or sign his name. I told him it was for both of us in case one of us got sick. Do not mention to him it has anything to do with his diagnosis. I had me as the primary & my daughter as his secondary. I had my daughter as primary and son as secondary. Within a few months I needed the DPOA to sell our RV, rent us a small apartment & trade in our car on a newer one. 2. If he is a disabled veteran, the VA has a Caregiver Support program you may be able to qualify for, if not now, you may soon. I applied online and was approved within a couple months. If you qualify they have respite care and may pay someone to care for him. 3. Get control of finances. My DH never paid bills and didn't use a computer so that wasn't an issue. 4. Ask the Neurologist about driving. My DH took the 3 hour Neuro Psyche eval and they called the next day and told me that he should no longer drive as he had severe visuo-spatial difficulties. I didn't notice it. Scary. She said he could easily rear end someone. Once the diagnosis is in his medical record, if he is in an accident, even if it's not his fault you could be sued and lose everything. I gently told my DH what the "doctor" said and the next day he brought me his keys and never drove again. You will learn to fib to him to get him to comply. It's necessary. You can't reason with him. As someone posted on this forum. His "reasoner" is broken. 5. Keep track of his behaviors and send them to all of his doctors every month. It will help them understand his progression. I send them online using the VA message portal. 6. Learn all you can about this terrifying & heartbreaking disease. Here's a document that helped me understand. It lists behaviors that I use to communicate with his doctors. There are lots of videos on this ALZ.org site as well as Tam Cummings has videos that will help. https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf

BMT2023

https://alzconnected.org/discussion/66974/when-to-tell-others-of-diagnosis

Your situation is EXACTLY like mine. Early onset diagnosis and does not want anyone to know. I am reading the comments and trying to understand what to do next. I see alot of folks are speaking of driving. My spouse still works and drives.

M1

I also favor telling others sooner rather than later, most people will begin to pick up on it anyway and it gets awkward if you don't speak up. My partner never wanted to discuss it, didn't want anyone to "know" but also has anosognosia such that she couldn't and still cannot perceive that there is anything wrong.

As much as you may be in the habit of deferring to your spouse's wishes, you cannot let him drive this train. If you fear that he is going to get aggressive or abusive, Also bring that up with his doctors sooner rather than later.

Cathymt21

https://alzconnected.org/discussion/comment/187767#Comment_187767

Thank you so much for the info! I ended up talking to my DH and he called my parents last night and we told them together! This way, my parents told us exactly what y’all are telling me about an attorney, POA, etc. so we are going to get everything set up and prepared for the future!

Iris L.

BMT2023, if you describe your situation in your own thread, you will get thoughtful, pertinent responses.

Iris

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