How do you know when to intervene with outside activities?

Posted by nlou @nlou, Jan 17 11:24am

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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Profile picture for memoriestomoments @memoriestomoments

@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

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@memoriestomoments Thank you for sharing. Your response is very helpful!

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Has anyone ever had issues with the use of the computer and phone for their loved one with MCI. He did have a neuropsychologist evaluation and told the evaluator he does not have any issues working with his computer and phone but there are, in reality, constant issues. He claims he never gets texts sent to him, or phone calls sometimes. He can't seem to figure out how to change settings or what the settings should be on, and claims his computer is doing all kinds of weird things that are clearly operator related. I am just concerned about him doing something that will cause us financial chaos. We don't have a lot of money, and he does not have access to some accounts in my name, but others he has access to and could cause havoc. Any advice on what has worked to help with using the devices or keep him safe on them?

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Profile picture for nlou @nlou

Has anyone ever had issues with the use of the computer and phone for their loved one with MCI. He did have a neuropsychologist evaluation and told the evaluator he does not have any issues working with his computer and phone but there are, in reality, constant issues. He claims he never gets texts sent to him, or phone calls sometimes. He can't seem to figure out how to change settings or what the settings should be on, and claims his computer is doing all kinds of weird things that are clearly operator related. I am just concerned about him doing something that will cause us financial chaos. We don't have a lot of money, and he does not have access to some accounts in my name, but others he has access to and could cause havoc. Any advice on what has worked to help with using the devices or keep him safe on them?

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@nlou
I had to get my husband's debit and credit cards away from him due to financial abuse. We surrendered them to our credit union, and I changed the password to our credit union account online so he can't perform transactions. He was not happy about that and to this day asks about getting his cards back and asks for the password. Sadly I just tell him it's to protect our financial security.
When I use our debit and credit cards I make sure to call them our cards, we're spending our money; I am just the one holding 'our' cards.
Good luck to you.

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Profile picture for nlou @nlou

Has anyone ever had issues with the use of the computer and phone for their loved one with MCI. He did have a neuropsychologist evaluation and told the evaluator he does not have any issues working with his computer and phone but there are, in reality, constant issues. He claims he never gets texts sent to him, or phone calls sometimes. He can't seem to figure out how to change settings or what the settings should be on, and claims his computer is doing all kinds of weird things that are clearly operator related. I am just concerned about him doing something that will cause us financial chaos. We don't have a lot of money, and he does not have access to some accounts in my name, but others he has access to and could cause havoc. Any advice on what has worked to help with using the devices or keep him safe on them?

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@nlou As my hubby’s disease has progressed he has lost his ability to use the computer, iPad or his cell phone. He can still select apps on his phone to listen to music or watch videos but that’s about it. You really need, if you don’t already have, a Durable Power of Attorney that you can give copies to your banking institutes. Back in the Summer before I had done that (I had the paperwork, just hadn’t given it to the bank) my hubby got mad at me, drove to the bank, withdrew all the money from our account and opened a new one for himself. It took me a few weeks to get that mess straightened out, but you can bet I got everything important put in right order so that wouldn’t happen again. I never dreamed he would do anything like that. It was a rough Summer and he did a few other out of the normal for him things and I ended up having to take his keys and stop his driving. You not only have to protect your loved one, but you have to protect yourself as well.

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Profile picture for nlou @nlou

Has anyone ever had issues with the use of the computer and phone for their loved one with MCI. He did have a neuropsychologist evaluation and told the evaluator he does not have any issues working with his computer and phone but there are, in reality, constant issues. He claims he never gets texts sent to him, or phone calls sometimes. He can't seem to figure out how to change settings or what the settings should be on, and claims his computer is doing all kinds of weird things that are clearly operator related. I am just concerned about him doing something that will cause us financial chaos. We don't have a lot of money, and he does not have access to some accounts in my name, but others he has access to and could cause havoc. Any advice on what has worked to help with using the devices or keep him safe on them?

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@nlou One of the first clues i had that my husband had cognitive decline was when he fell victim to aa computer scam and surrendered all of our banking information! We had to close all of our accounts and reopen new ones. This is a man who was an executive in a fortune 500 company and in charge of business systems! He now can hardly use his laptop without getting extremely agitated because it keep "losing his messages" deleting his calendar, etc Finally when he asked me how to send an attachment, I knew we had to do something. It is sad for all of us in the family, but for me to watch him struggle with things that were second nature to him a few years ago, he is so changed; I mourn that.

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Profile picture for mtdt757 @mtdt757

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

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@mtdt757 my husband of 52 yrs was diagnosed 3 yrs ago. Your post describes our current state exactly. Fortunately he is very loving and kind, but so sad at what he has lost. I try to keep him busy with puzzles and he will try painting by number soon. Unfortunately he can’t retain information when reading. He’ll watch TV, reruns are new to him!! One of the hardest parts for me is the unknown. Will he progress to full dementia. How do I prepare now or will I be jumping the gun. So stressful. I’m happy I found this site. Thanks for your post.

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Profile picture for nlou @nlou

Has anyone ever had issues with the use of the computer and phone for their loved one with MCI. He did have a neuropsychologist evaluation and told the evaluator he does not have any issues working with his computer and phone but there are, in reality, constant issues. He claims he never gets texts sent to him, or phone calls sometimes. He can't seem to figure out how to change settings or what the settings should be on, and claims his computer is doing all kinds of weird things that are clearly operator related. I am just concerned about him doing something that will cause us financial chaos. We don't have a lot of money, and he does not have access to some accounts in my name, but others he has access to and could cause havoc. Any advice on what has worked to help with using the devices or keep him safe on them?

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@nlou yes, that was my first clue something was wrong three yrs ago. Fortunately he relinquished the control of our finances shortly after. You might look at the checkbook for errors. If found, you can then show him what you found and suggest that you assume that responsibility. Hopefully he’ll see the wisdom in that. All the best!

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Profile picture for nancindancin @nancindancin

@nlou One of the first clues i had that my husband had cognitive decline was when he fell victim to aa computer scam and surrendered all of our banking information! We had to close all of our accounts and reopen new ones. This is a man who was an executive in a fortune 500 company and in charge of business systems! He now can hardly use his laptop without getting extremely agitated because it keep "losing his messages" deleting his calendar, etc Finally when he asked me how to send an attachment, I knew we had to do something. It is sad for all of us in the family, but for me to watch him struggle with things that were second nature to him a few years ago, he is so changed; I mourn that.

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@nancindancin I can definitely relate!

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Profile picture for dsand3 @dsand3

@mtdt757 my husband of 52 yrs was diagnosed 3 yrs ago. Your post describes our current state exactly. Fortunately he is very loving and kind, but so sad at what he has lost. I try to keep him busy with puzzles and he will try painting by number soon. Unfortunately he can’t retain information when reading. He’ll watch TV, reruns are new to him!! One of the hardest parts for me is the unknown. Will he progress to full dementia. How do I prepare now or will I be jumping the gun. So stressful. I’m happy I found this site. Thanks for your post.

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@dsand3 I understand your reluctance to plan ahead for the worst, it’s hard to cross those lines. I also felt that way about moving forward with safety measures for our future. We have been married 52 years, also. My husband has a lot of confusion, but can still fake his way through some things with strangers, and work his phone at a lower success rate. But I approached updating important things by tippy toeing into each thing methodically. It helps that he can be convinced of things easily, sometimes, I have to feel my way into it. Baby steps, but do get finances, powers of atty for finance and medical in place if you haven’t. Just try vague honesty about taking safety measures “just in case” something were to happen to ‘either’ of you so you’re not left in a bad place, because then it would be too late. Mine didn’t love dealing with it all, but just accepted it. It can take some time, we’ve been working through it since early October, but we wanted to change something after the fact, so that stretched it out more.
Good luck. You can handle it.

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@nlou, in addition to the helpful and pragmatic responses you've received from members, you may appreciate the articles in the Mayo expert MCI blog
- Mild Cognitive Impairment (MCI) Blog https://connect.mayoclinic.org/blog/living-with-mild-cognitive-impairment-mci/

Here are a few posts related to your questions:
- Who Else Besides Family Should I Tell About My MCI? https://connect.mayoclinic.org/blog/living-with-mild-cognitive-impairment-mci/newsfeed-post/who-else-besides-family-should-i-tell-about-my-mci/
- Coping with Memory Loss in Social Situations https://connect.mayoclinic.org/blog/living-with-mild-cognitive-impairment-mci/newsfeed-post/coping-with-memory-loss-in-social-situations/

I fmust be tough to deal with the anger. Is this something new for him? How are you doing today?

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