What to say

AzCrazy Diamond

first, thx to all for your help and experience.

My spouse is totally isolating, won’t go out and wants no visitors. I think I need to get out more, volunteering, church, etc. but what do I tell to so many people who want to see her, go to dinner, come over to watch TV? “She’s not feeling well” or “doesn’t want to leave the dogs alone” , they’re not really buying it anymore but are politely not pushing it. But clearly they are concerned.

how long do I keep making excuses for her? I’m not gonna just say “she’s mentally going off the deep end”.

Chris20cm

how about, "She's having some memory issues and is a bit embarrassed to be in social situations."

Quilting brings calm

You say this to most of them: She’s not up to having visitors. It makes her too anxious. I will tell her you asked about her.

You tell the rest of them the truth. She has a condition that will worsen over time and is not ready for visitors. Certain people do need to know in case she makes inappropriate decisions or exhibits odd behaviors around them. For example- suppose she wanders out of the house to a neighbors and tells them some confabulated story about you or others.

M5M

Also remember YOU have needs and options in this equation. You are loving and wise to work mostly within her wishes of isolation, but as the caregiver, you have not only responsibility but also rights. Allow yourself the pleasure of inviting a friend/neighbor/etc over for coffee and a visit. Shortly before the person arrives, mention offhandedly to DW that is coming by for a brief visit. If DW chooses to go to her room, she may, and you should enjoy the visit with your friend. You might also consider starting the often tedious journey of finding someone to help you on a long term basis…..have that person come for short visits to YOU….with the idea that eventually your spouse might relax around that person and you will be able to leave at least for some brief times. You already know you need some time away, begin to implement a good strategy. Best wishes!

Michele P

https://alzconnected.org/discussion/75536/what-to-say

I have read your post and the great suggestions you have been given. The first thought I had was speaking to her neurologist about medication for anxiety and depression. Maybe that would help. You have got to have social interaction to stay sane. Do whatever you need to do to make that happen.

Timmyd

We were assigned a social worker after DW's ALZ diagnosis. One thing she spoke about was her goal of eliminating the stigma or taboo associated with dementia. That sounded to me like a very ambitious goal. I have since decided I will do my small part to contribute. I speak clearly and honestly when describing DW's condition to friends/family/acquaintances etc. I keep my head up, look them in the eye and speak the truth without hesitation.

What other medical conditions would your spouse have for which you might make excuses for her absence from social situations? For some people, any serious terminal disease might be kept secret from all but the closest of family and friends. The nature and duration of dementia is such that it really hard to keep secret regardless of what information the caregiver does or does not share.

debriesea

When my DH was officially diagnosed I told all our family & friends. The support, from caring to being there, has been amazing, with almost all of them having a family member/friend with Dementia. I also explained about his anosognosia.

AzCrazy Diamond

I will pursue doing volunteer work again. It feeds my spirit and improves my mental health. For better or worse if I tell anyone in the family anything about her health it’ll be coast-to-coast by morning. No regard for privacy. She does not yet exhibit obvious outward dementia symptoms that would be clear to all or warrant a diagnosis, but there is undeniably and clearly depression. I like the “not up to having visitors right now”. It leaves it vague enough. They’ll push for more so they can feed the grapevine. Perhaps “not my place to say”.

Victoriaredux

A few things occurred to me- taking care of you is important for the both of you but who will watch her when you are doing volunteer work?

Dementia is more than loss of memory -judgement, empathy etc . so you never know when something out of the ordinary can happen that is dangerous . Leaving water running, stove on , doors open , opening to strangers , giving out personal info over the phone etc .

I'm glad you are talking to an attorney [I assume] to draft DPOA s , etc to take care of the future since it sounds like family won't be of help.

"She does not yet exhibit obvious outward dementia symptoms that would be clear to all or warrant a diagnosis, but there is undeniably and clearly depression."

Some diseases mimic dementia and getting them ruled out would be of benefit. Can you tell her that the government is requiring a doctor visit ? The Dr can then evaluate her for meds that may make both your lifes easier.

On the TV , hmm….are you sure she has the skills to reprogram the set - maybe the "war" caused her stations to go off air. The "news" seems to trigger her and separates you into two rooms so I'd try something. Drop those channel options on her set etc .