Conundrum…Explain my wife's behavior in social situations or not?

Posted by randywhite @randywhite, Dec 16, 2022

I am interested on others perspectives regarding the following conundrum. In the context of our ‘social integration’ building new friendships in our freshly ordained snowbird habitat…
I find myself sometimes in a very awkward spot of having to:
1. either explain my wife’s behavior (discretely to others) as being MCI induced emotional disturbances or
2. on the other hand just ignore it and allow the others exposed to that in a social situation to make their own interpretations of a) her being an unpleasant or angry person or b) us being a disharmonious and incompatible couple.
Either way negative outcomes are likely:
A. The recipient of that exposure or explanation may interpret that they need to steer clear of her or us
B. The recipient may be inspired to exercise interest and engagement as they see an opportunity to exhibit care and grace towards people in need
As I write this my ‘problem solver nature’ emerges with prospective solutions. However I’ll stay silent on those for now, and seek your words of wisdom. All👂‘s
Randy

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

@fwentz

Randy,
You might want to check out this website:
https://www.alzstore.com/please-be-patient-alzheimers-cards-p/0187.htm
My wife had Alzheimer's Disease. She recently passed away. But years ago when we were out, for example in a supermarket, at times she would make some unusual comment or behave in an unusual way. I would hand the person, who was wondering what was going on, a card that said something like, "My companion has Alzheimer's Disease, please be patient with her!"
That had the advantage of not embarrassing my wife with a discussion with others about her condition.

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I have found these cards to be most helpful, particularly when dining out and traveling (both of which are becoming less frequent now!).
Lots of thumbs up, smiles, and thank yous.

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Rather than asking people on this web site your questions, I would suggest asking your wife. If she has MCI, then she knows her condition (and her family's history) and can direct you how she wants you to handle the various situations. It's good to know her wishes now before she progresses. If people don't want to know or in denial, then forget about them and focus on the most important person, your wife.
My wife goes out on "dates" with our son and grandkids (individually) and has frank conversations with them about her condition (she has moved from MCI to dementia) because genetically it's important for them to know. My wife's mother died from Alzheimer's so it is running in the family.

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@randywhite I will bow out of this thread, but not before stating one thing. My personal, firsthand experience is that grief and how one grieves are among the most personal and highly individualized emotions/experiences anyone lives through. I deeply believe there is no mathematical equation for "proper" grieving, nor standard steps as are so often written about. Just as our love for someone is our unique experience, so is our grief when we lose them. Judging someone else's grief can cause unfortunate hurt and, again in my experience, does nothing to help that person with their grief.

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Hi @randywhite, My husband has moderate Alzheimer's Disease. He was diagnosed in 2019, but I knew things were amiss in 2017. The Alzheimer's has made my husband less sociable. He doesn't care to leave our house much so I shop, bank, and run errands alone. When friends come to the house, he's usually standoffish and stays in his room. I've found that coaching him in advance regarding acceptable behaviors sometimes helps him. At other times, he forgets. I try to protect him and only tell others of his condition on a need to know basis. I've told relatives and close friends, a couple of neighbors. For more causual acquaintances, it depends. I disclose if the benefit of their knowing would outweigh the risk of their knowing and would not subject him to ridicule or harm as far as I can know. I also tell people who expect me to be more sociable of his condition to explain why I decline invitations.

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@centre

My husband slowly declined over 8 years with the diagnosis of MCI, has progressed now to the diagnosis of vascular dementia. My best advice is to analyze possible activities and choose those which will be least stressful and over-stimulating, as stress exacerbates emotional outbursts. Eating out with potential friends will be high stress-noise, navigating the menu, making choices, making conversation, waiting. Inviting another couple for take-out at your place or a picnic place will be much lower stress.
I would also recommend choosing a church. Many members of the new “church family” will be kind, there are men’s and women’s groups and joint activities that will help friendships develop. Plus, in the future, the friendly visitors will start. Visitors from our church have followed my husband through hospital and rehab stays, bring him holiday cards made by the Sunday School kids, and come monthly with Communion. He finds great comfort in the familiarity of the church rituals, but in-person attendance is too stressful.
If your new place is in a “resort”-type setting, there will be lots of activities to choose from- Trivia may be out, but Art or Music will work. Keep thinking about the stress level- open-ended chitchat may be hard, but enjoying talking about a favorite subject at a club meeting won’t. My husband loves to talk about home remodeling, but can no longer dress himself or make sense of a menu.
Your new town will have a Senior Center- many full-time caregivers bring their loved one for a morning or two, the staff will be adept at choosing activities and providing appropriate instruction. You will be welcome to join in too.
Finally, your writing style show you to be a highly intelligent and accomplished person. I imagine your wife was too. One of the hardest parts of this journey for the spouse is that: that life is over. The future holds a steady, sometimes precipitous, decline, which will call on every fiber of your being to be calm and patient and loving. None of it is “fair”, but what can you do but carry on and do your best, under what will be very trying circumstances. Anger at fate or clueless relatives gets you nowhere.

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Thank you for your thoughtful, considered sentiments. 🙏🏻. You have observed, and tentatively speculated with insights.
Regarding our approach to this challenge; one colleague when I worked said ‘the enemy of courage is fear’.
There is also a relationship between denial, reaction, and results:
No denial>acceptance>determined action>advancements (for MCI=Pace reduction and impact abatements)
Denial>complacency (surrender)>unabated decline
My goodness, it’s not like we are helpless & MUST surrender. But nor is it like we can Control the situation either. We are like riders on a horse, if we surrender our will, the horses wanders where it wants. If we exercise will via the reigns, the horse goes where we wish. But in spite of what we wish, it cannot fly. Only pigs can fly.🤣
And we are gratified to have flown to great heights, on wings of eagles Isaiah 40:31

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