DH is still very capable, but I am focusing on the diagnosis which frustrates him

shiawase12

My DH and I have been to a few doctor appointments and have been told he has some form of dementia. We're waiting on a couple more tests (hearing & sleep) before a follow-up appointment with the geriatric dementia specialist.

DH says he just wants to live life and enjoy it as best he can. He admits he has memory issues - forgetting words but does not see his issues as anything more than that. He is still capable of taking care of himself. He still does projects around the house and even cooks our dinner most nights.

He's frustrated and gets angry with me because he says that I keep referring to dementia and making that the reason for any little thing that comes up. "Everyone gets old and gets slower and has memory issues with that."

He doesn't see any need or purpose in telling anyone that doctors are saying it's dementia. I of course would feel better if the family and close friends knew exactly what’s going on.

I'm having a hard time "ignoring" all the signs I see and not letting him know I see things or not doing more because of them. He feels I’m controlling and causing him to be frustrated.

Arghhhhh I too am frustrated / angry / sad we're having to face this. Of course, he doesn't even understand where I'm coming from when I say, "We need to both be patient with eachother as we adjust to our new normal and different way of communicating." I guess he just doesn't see a need for it.

At least he's agreeable about taking care of practical matters such as banking and POAs etc. that need to be in place.

Thanks for letting me vent a bit.

rplourde50

It's a part of the process. My DW went through a similar stage. A very delicate balance allowing them to feel "whole" while setting plans for later stages of the disease. My wife has now moved on to coping and is quite open about it whenever it comes up. She asks for help when she thinks she needs it and pulls me into the conversation almost at once if anyone calls her about important matters like finances. "To everything there is a season."

M1

Welcome to the forum. Most of us learn the hard way not to tell our partners/spouses that they have dementia. It is meaningless to them: most have anosognosia, which is a feature of the disease in which they truly cannot perceive that they have deficits: they think they are fine, it's not denial. So you will probably be better off not discussing it with him—and this is also a hard lesson, because of course you're probably used to discussing everything with him. Now, you cannot, and the rules have changed out from under you. Your relationship is going to change out from under you.

I've told the story on myself here many times that when i first told my partner I thought she had dementia (about 2014), she about took my head off. Then i made the other rookie mistake of thinking that if she heard it from our doctor, she would have an "aha" moment, realize the implications of having dementia, and would know from that point forward that she had to defer to me on any number of things. Our doctor literally laughed at me when I discussed this with him. That's just not how it works, and that's what you are in the process of discovering. You have to learn to work around it, and it is very isolating, and very lonely. I'm sorry you're going through it. But yes, it's good if you can get powers of attorney, etc. settled now (remember someone else needs to be named as your executor), and accomplish as much of your bucket list as you can while he is still able. My partner and I took a 25th anniversary trip to the North Rim of the Grand Canyon in 2019 (she was early stage 4 at the time) and I'm very glad we did, it was the last year we traveled (and of course right before covid hit). There will come a time when you will have to tell a wider circle of people, too, but that is more discretionary.

shiawase12

https://alzconnected.org/discussion/comment/208556#Comment_208556

A delicate balance for sure. I too hope that my DH will become quite open about it, but I am learning quickly that I can't count on that happening. Will take this one day at a time while I also make sure practical matters are handled as early as possible. Thank you.

shiawase12

Yes, learning to work around it is the trick here I think. And learning not to feel guilt over discussing the situation with my dear friend and supporter or my daughter. I need to be able to do that for my own sanity.

Appreciate your wise words as you and others here help to guide me on this journey.

Jo C.

I am sorry for what is happening. It is changing the entire future landscape you had thought was the future and is truly a stunning change. While it may be helpful to let some of the key family members know about the diagnosis, there is no reason to let him know you are sharing his private health information. Best to limit that to people/family who need to know and keep it softly quiet and they should NOT bring it up to him until HE is ready to talk about it if he ever does become ready. He may not.

You may find it helpful to see a counselor for yourself by yourself so you have a way to vent your feelings and losses and have positive helpful interaction and to be able to talk about those feelings and the dynamics with someone who understands and can support without being off the rails so to speak.

I will say for our situation, one of the first things I learned was NEVER to use the term, "dementia." It was a trigger for unwanted negative dynamics. I also had to learn to contain myself and not continue to address all and sundry and point out shortcomings or incidents as related to "dementia." That was actually rather insulting to my Loved One.. My LO needed breathing space and a full on press was a significant negative. It was also not always necessary to point out something that had been done or not done caused by the changes in the brain. That approach can be a kindness.

Initially, it is best to be gentle and even polite about the dynamics until things settle in a bit better even though we feel we want to go out and howl at the moon.

Hang on; you will soon have a reliable diagnosis and the "recipe" for his care according to his condition and capabilities as they evolve. Having a dementia specialist as well as the primary MD as part of the care team is key to doing best. Our primary MDs are awesome at so much but they are not on the cutting edge of dementia practice. The specialist will also be able to prescribe accurately for whatever is presenting that needs a bit of help.

It would be a good idea to get all financial and business items addressed while things are in the early stage and his signature valid. I did not do this with the idea of "dementia," but rather related it to the idea that we had not put our personal finances and future needs together and we were not getting any younger. I was able to privately clue in financial and legal professionals and to let them know my LO was capable of understanding, and this helped a lot while maintaining my LOs dignity as we "updated" our paperwork.

I send warmest of thoughts and best of wishes your way as you move forward. Let us know how things are going, we will be thinking of you.

J.

shiawase12

https://alzconnected.org/discussion/comment/208577#Comment_208577

Thank you so much. All very helpful information. So agree with not using the term "dementia" with him any more. Nothing positive to gain there. It's comforting to know that you and others are here who are ahead on this path that I can learn from. ❤️

Iris L.

Do not discuss dementia or Alzheimer's with him. Please familiarize yourself with anosognosia, he is unaware of having dementia. Learn the work-arounds that the members use.

You say he is very capable and is cooking. But there must be issues, or he would not be evaluated for dementia. Due to the anosognosia, PWDs are also unaware of safety issues. Be very cautious of use of the stove, knives and sharp objects, cleaning and other compounds, and safety in general. Driving is a big issue, there are many threads on driving.

Iris

SSHarkey

Lots of good information here. To add to that, he’s probably spinning in his brain, trying to soak in the situation. It’s a huge diagnosis, and he’s emotionally fragile because of it. As time passes, hopefully he will begin to acknowledge the reality of it. His attitude about living fully is good. You both need to do that. Yes, the business matters need to happen. But while you’re doing that, savor the life today. Carpe Diem! While you can!