How do you know when to intervene with outside activities?

My husband started MCI 2.5 years ago. I have navigated the whole medical side of his journey for a year. Brain scan Cat scans, neuropsychologist test... I felt like I was alone until I found Mayo Clinic connect for caregivers.
What a breath of fresh air. There are many other couples navigating the same "Journey"
I am now an open book about my honey's situation. (48 years coming up this year's anniversary)
Don't be embarrassed. No person with this unfortunate disease asked for this.
Has it been easy with frustration of repetitive conversations. No memory of what was just spoke. YES
Just love them
Speak Kindley
Never say don't you remember
Hug and console them when they are confused
Tell them you appreciate and love them
I hope this helps any caregiver out there
The Serenity prayer helps
I love this community

@nlou Welcome to Mayo Clinic Connect ! Yes, you are at a crossroads with your spouse and the volunteer work he is doing. Tomorrow morning the members of this group will ask you questions and tell you what has worked for them. They are great!
Does his doctor know of his anger issue?

Hello:
I am struggling with the same type of dilemma.
My husband is a Rotarian, and now has frontotemporal dementia. He would sign up to help with some of their club projects then not follow through, forget to show up, leave early from the commitment, just plain unreliable. So, that was when I told a few key folks in the club about his diagnosis.
My husband still enjoys going to the meetings for social reasons, however he doesn't engage with the group like he used to and no longer volunteers.
From a financial standpoint I can't justify continuing to pay his dues, and from a social aspect it's still something he wants to do.
I told those few members that if his behavior or actions seem inappropriate at the meetings, let me know and I'll stop bringing him (I don't attend his meetings, just drop him off since he no longer drives).
It's a tough one!
All the best to you.

How do you know when to let your wife know it is ok to stop going to activities that she wants to attend but dreads going?

Hi @nlou,
I generally tried to compensate for my husband's losses of capabilities as they happened. I stepped in to help, adapted the newly difficult activity, or got someone else to help, as soon as the need was significant. This was so that, as much as possible, he would not feel the impact of the loss: He would get to do what he wanted to do with help appearing as needed with no reference to his need for that help.

I didn't know if my husband would get angry as the symptoms increased, but I definitely feared that he would get depressed. Fortunately, with the approach described above, we avoided much frustration and have staved off most bad moods.

This takes some careful thought. I have found it helpful to be specific about the things that I try to protect for him. High on the list is his Dignity. Another is his Sense of Belonging. Another is his sense of Identity. In the situation that you describe, both Dignity and Belonging are involved and may conflict. For example, telling some sensitive people about his condition may extend his participation in the volunteer activity, building up his Sense of Belonging. But if learning his condition leads some people to exclude him or treat him with less respect, then clearly that is a loss of Dignity that you would want to avoid. Happily there is usually one or more persons who are sensitive and caring who you can trust to be helpful.

I found it important to provide the people I told about my husband's condition with specifics to help them provide appropriate assistance. For example:
- What is difficult for him at this stage,
- Basics of how to communicate with him in a way that is comfortable and effective for him (e.g. don't give him choices to make, don't expect him to remember details -- write them down)
- Best types of tasks to assign to him, and which to avoid
- Level of confidentiality of the information
- Other
This may help with your concern about your husband feeling angry.

You don't sound like someone who is meek, but you may worry about how people may react to being asked to help in this area. Most families have someone who has been through this experience. They are glad to be helpful. Sometimes you run into people who are unfamiliar with the condition or uneasy around it. I find that emphasizing our own comfort, our sense of "Normal, just an expanded version of it!", and our positive outlook helps erode those people's barriers.

I hope that there is something in the above that is helpful to you. All the best to both of you.

@141942
I can really sympathize with you. I faced that situation with my husband multiple times as various activities he enjoyed became too difficult or uncomfortable to him. Maybe the best example is Golf. Prior to the symptoms, he LOVED playing golf. As the Alzheimer's symptoms developed, I noticed that playing started to become increasingly frustrating. The preparations for play were taxing, his skill level started to decline causing shame, the equipment was hard to manage, etc. But it was such a part of his Identity, that he refused to do the "logical" thing: Stop doing something that you no longer find enjoyable.

We tried a simplified activity: Hitting balls at the golf range. That was ok but short lived.

Over time I gently just keep reflecting to him that he did not seem to be getting the satisfaction he used to get from it. I also started to encourage him to do other sports. That combination is what worked. He started bicycling again and really enjoyed it. He started to go swimming with me and that became something that he really loved.

We have gone through this pattern several times as his capabilities have changed. In each case we:
1. Modify the activity to accommodate his capabilities,
2. Make the social part of the activity the focus
3. Start looking for a substitute activity to move into as it becomes clear that the current activity will not be possible much longer.

Golf took a long time to drop. In the case of a singing group, I noticed that he was starting to feel a bit anxious about going to the weekly practice. One week, I said "Let's not go today, I don't think you are feeling it. You can go back next week." Breaking the pattern of regular attendance worked. I think he went back once or twice but then was glad to take any reason of not going. Very soon, NOT going became normal.

In terms of communication about this, I never pointed out the transitions. We focused on the positives about the new activity (or new supported version of the activity). The idea was to make the transitions out of each activity seamless and not generate any regret, or shame about not being able to do the original activity any more.

I hope that your wife is able to find new, more suitable activities. Of course if one or more involve exercise that would be great. I think that exercise has made a huge positive impact on my husband's Alzheimer's experience. Best wishes

Good advice..thank you!

@memoriestomoments thank you for this; I just don't want to see her feelings hurt. This is going to be a journey and it's nice to be able to visit folks that will share their experiences.