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How do you know when to intervene with outside activities?
I am just plain pragmatic, partly because of the way I am and partly because of life experience, but I do work hard to take care of myself and keep active, and help others through volunteering. My husband with MCI also volunteers and is involved with outside activities, however, I have to pick up a lot of the the "mental work" for him (making sure he "shows up" or helping him at home with tasks he has agreed to do). How do I know when it's time to share his diagnosis and get assistance from others? How do I approach that delicate situation? He is always angry, so I'm sure there will be that to deal with, but it might be worth much worse if others don't handle it well.
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JMHO…my mom, sister, and brother all had/have what appeared to be at first MCI and evolved into dementia for all 3. Family and closest friends need to know sooner not later.
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3 Reactions@141942, such a good question and I love the helpful reply from @memoriestomoments.
@141942, is it the anticipation of going to the activity that she dreads, but enjoys it once she's there? Or does she both dread going and no longer enjoys the activity?
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1 ReactionThis seems to be a good topic for me this week as the caregiver with a husband who has MCI. We took a trip 1 1/2 hour from where we live to see a grandson who flew in from Canada, play ice hockey. well, there was drama. Driving was a big issue. He struggled, and when I took the wheel, he was so anxious, that we had more drama. It was obvious he didn't want to be uprooted from home even though we had been planning the trip. It's all so overwhelming. We had to stop to do the grandson's laundry - that's another story - but he just stood in the front of the laundrymat, not sure what he was supposed to do or wanted to do. Th en something happened to his phone, a daily, up and down, as he hits things on the phone, and then something happens for me to figur eout. When I asked him or help, at the laundry mat he struggled. I found with MCI, he's almost child-like, not sure what to do, when or how to do things. Yet, he's still independent, unless something happens, and it triggers anxiety, somewhat angry and/or defensive, and just uncomfortable in "confusing" settings. I think the biggest challenge or hurdle for me - and I'm sure any caregiver - is just trying to figure everything out on our own. He's on lequembe but I'm not sure if after the 9th infusion, I'm noticing any change. Does anyone out there on leguembe, see any progress. Thanks.
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3 Reactions@colleenyoung
Mostly the dread of going, feeling self conscious. Afterward she is fine and enjoyed going.
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1 Reaction@kjc48
Hi, my husband was diagnosed with MCI in 2024, and was put on meds. His condition worsened with the first and the second med we tried. The meds do not work for everyone.
So, now his diagnosis was changed to Frontotemporal dementia and he still is off meds.
We may have missed our window of effectiveness.
Hope you get a med that works well and helps keep him from getting worse (even though it won't make him better).
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3 Reactions@judimahoney Thanks for your reply this morning. I'm sorry the meds didn't work for your husband. Window of effectiveness, who knows with all of this. It's so bewildering and confusing. I worry about these lequembe treatments but he's moving into his 9th infusion. Thanks for checking in and replying. Caregiver's replies really matter on this web site in helping all of us navigate through the uncertain.
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4 ReactionsI'm just getting into all of this and the abbreviations for different stages or kinds of dementia are confusing. Is there a resource or Cliff Notes that would help me?
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1 Reaction@141942 Many of us have the same problem. Figuring out what initials stand for. If you come to a discussion that is important to you, you can put in the initials or name of what you don’t understand, into the search box and the name will come up. I’ve been a nurse for 30 years and I have to do this frequently!
It does take a while before you are completely comfortable with these anacronyms and names of specific things. And I don’t think there is a Cliff Notes to help you.
I just checked out Mayo Clinic’s information web site to see if it had some information—it does! Go to the bottom of this page into the blue area. Scroll thru the column on the left until you come to Mayo Clinic Connect under the symbol for Mayo Clinic. Then click on the small letters for MayoClinic.org. This will take you to a page with an alphabet and you can look up words and initials. I put in MCTS because you will see it frequently. You can either tap the search button or go to the
M in the circle and tap on that. They should bring up the appropriate page for you. Either @colleenyoung or @johnbishop will probably explain it much better! I hope this will help you!