He wants to see my list

crsandy

I've been concerned about my DH moving into dementia for 5 years. It's been slow but seems to have speeded up. I keep a journal of behavior changes I've noticed. So, yesterday we had The Talk. I handled it very badly although I'm not sure what a good way would be. (We've talked about the possibility before but he doesn't remember me ever broaching the subject. He doesn't remember refusing to take a periodic cognitive test.) Now, he's very angry and feels exposed and abused, like he's under a microscope. He wants to see my "list". I indeed have a list, based on the ALZ warning signs, which I've carefully edited in an effort to not hurt his feelings. But I can't quite see the productiveness of giving it to him. He will argue each and every point. He will misconstrue my intentions. We will fight. He will fume. But I'm not convinced he can read with an open mind and consider the possibility. Should I give it to him?

ProfT

I would not. What purpose would it serve in the short or long term?

Dio

I think you've answered the question already. Just reread your last few sentences. What's the point of showing him if there's no benefit?

sherryandwilliam

https://alzconnected.org/discussion/70785/he-wants-to-see-my-list

Make a fake list saying nice things about him and give him that

Jgirl57

I agree with the fake list with the more gentle observations

easy23

I agree with the fake list saying nice things about him.

Quilting brings calm

just tell him you lost the list.

jfkoc

I never ever discussed in any way my husband's dementia with him. I always thought it would be a lose/lose conversation.

harshedbuzz

Rule one of dementia fight club is not trying to reason with a person who has a broken reasoner.

In almost all situations, it's best not to discuss the changes you are seeing with him or in front of him. If you need to communicate with his doctors, use the patient portal to send a message or write a list of concerns to be discretely given to the doc to read ahead of the visit.

HB

makking

https://alzconnected.org/discussion/comment/224183#Comment_224183

…and double-check with the nurse that the physician has, in fact, at least scanned the notes before the appointment. We are less than a year into my DH’s Dx, and I spend a fair amount of time following up with providers to be sure they have additional necessary information besides my sweet guy’s bright smile and “I’m fine!” response to every single question. I believe I have never had to advocate so adamantly and so regularly for anything as I do in this season of our lives, for him.

Karen711

I feel like I’ve made more than my share of mistakes with LOs with AD. First my father and now my DW. I kept track of my DWs symptoms for years . I had never heard of anosognosia and assumed after I talked with DW finally about this , that it was a degree of denial I was encountering . I thought if I shared my concerns and provided examples with her it would help my DW understand we should get an evaluation to see if there were any “actionable” causes. All I accomplished was upsetting and angering her (this is an understatement). You’d think I’d learn the first time, but after a few years I actually brought it up again! 😵‍💫 This is not denial, it’s anosognosia.

Understanding the difference between denial and anosognosia is critical to compassionate communication and caring. IMHO, drop the list idea with him, and if he brings it up just say something like you’ve given up on any idea of a list and that there is no list. Eventually, if he hasn’t already, he will forget about any such list.
That said, I agree with others that knowing his symptoms and sharing them with his doctors is very important. Also, it’s now very important that you go in with him when he sees his doctors. If he won’t allow that you need to set up a DPOA if you haven’t already and communicate electronically with his doctors. You’ll need the DPOA in any case.
This has been a very thin dicey road to navigate between me and my DW and many others on this site. I’m sorry you’ve had to find your way to this site and for what you’re going through! This is a wonderful and indispensable group though and you’ll get a lot of support and sage information here.
Best Wishes!

Karen

SDianeL

As others posted, do not give him the list. Keep the list to share with his doctors at least monthly or if a new concerning behavior surfaces like agitation which can be treated with medications. I would not have talked about the list or had "the talk" with him either but you had no way to know how he would react. That's what this forum is for. For info & support. Learn all you can about the disease. Communicate with his doctor to get him tested. Don't say the words memory loss, dementia or Alzheimer's. Tell the doctor to say it's just part of his annual physical & another test his insurance company wants or something like that. Fibs are your friend. To get the DPOA, make the appointment with an attorney and tell him you are BOTH getting them in case something happens to either one of you and get both done. Don't name him of course but let the attorney know you want to discuss yours in private. Have the attorney say he needs to talk to you in private before you sign yours. When you get the referrals, don't talk about their specialty, just say his doctor wants these tests. Talk to the specialists about talking in front of him. They should know that but sometimes they don't. My husband's Neurologist talked about brain white matter and kept her voice neutral so my husband never understood. When the doctors prescribed new medications, I told my husband they were pills to help his brain like vitamins which he was already taking. Many of us have been where you are.

Iris L.

Read about anosognosia. If you confront him with reality, he will become upset. So don't confront him with reality. It's time for work-arounds (a fake list, for example).

Iris

M1

hi crsandy. I don’t know if you were trying to convince your DH that he has dementia, or explain/justify the move to memory care- but sadly, both are futile. You don’t do either. When it comes to the move to MC, you just do it with no discussion ahead of time. That seems brutal to those of us with working brains, but it’s what works best for most families.

The good news here is that he will likely forget that you ever had this discussion so hopefully he will forget about any “list.”

You have come to a good place for advice and support. There’s lots of threads about both issues (whether to discuss dementia with your loved one, and making the move to MC) so if you read a bunch you can dig deeper. Keep us posted how it goes.

MN Chickadee

Save the list for his physician for when it comes time to get diagnosed. I would never speak of dementia with him again. A person with dementia has a brain that is not working, will not recover, and can't process the logic, so what good does it do to try to convince them other than make them distrustful of you? Most of us instead pivot to therapeutic fibs, working behind the scenes, and communicating with the doctors on the down low. Use whatever fib gets out of the list conversation. You lost it or you thought hard on it and were wrong and tore it up. Redirect to talking about how you will always be there for him and something positive. He may have anosognosia, which happens in people with dementia and other brain injuries/illnesses. The brain becomes compromised enough that it's unable to understand its own deficits. It's different than denial because they simply will never understand, no amount of logic or reasoning will ever get through. The most compassionate thing is to say whatever brings comfort in the moment and find workarounds in the background.

trottingalong

https://alzconnected.org/discussion/70785/he-wants-to-see-my-list

We have never “had the talk” nor will we. Dementia, changing behaviors, memory loss or anything else is taboo. My DH will bring up concerns about his memory, and I ALWAYS choose to make him feel better by letting him talk to me about how he feels. We often have the need to explain or justify something to a person who is no longer able to recognize their own failings. You got some great advice from everyone here. Good luck.

H1235

Don’t beat yourself up. This is tough! No one gets through this making all the right decisions and saying all the right things. It takes a while to accept that you can’t reason with your LO and even then you may still try out of habit(I’m speaking from experience). Just when you think you have figured out this new normal, another new obstacle you don’t know how to handle pops up. Good luck.

Jean loves wildlife

https://alzconnected.org/discussion/70785/he-wants-to-see-my-list

I think you've answered your own question. It's not his fault, but you can't argue with a PWD and he won't be able to follow your train of thought. He will react as you have described. It is so frustrating not to be able to explain to him. I keep fighting the urge to explain to DH but I know it is futile.

I'm not sure what is gained by "The Talk." My DH has had that talk a few times when his doctor has brought it up but he doesn't remember and is totally in denial (anasognosia - what a cruel condition in a cruel disease). I don't bring it up beause if I even use the word he gets very angry which doesn't accomplish anything. )