Patience

Posted by wctdoc1943 @wctdoc1943, 3 days ago

My wife is somewhere on the (advanced???) MCI spectrum (not advanced dementia) and spends a lot of time scrolling through her phone and iPad emails, texts and phone calls. Today she was trying to delete a long list of "recent" (and not so recent) phone calls on her iPad, which can be done either in bulk (she is clueless how to do this) or by swiping individual ones. In trying to swipe she was "tapping" the call and it initiate a "call back" each time. So she came to me and I tried to explain how to swipe without initiating a call, and/or offered to bulk delete them for her. She then got agitated that I might delete something she wanted to keep (why, why, why???). It frustrates me to no end and I end up making her more agitated, and then I'm mad at myself for having no patience. It is so difficult to realize that she is not capable of understanding what I'm showing her, yet she still wants to do it herself. So we both end up upset. I understand this is all on me because she can't help herself, but damn it's hard. Thanks for listening.

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

Profile picture for wctdoc1943 @wctdoc1943

@kjc48 Thank you for your comments. My wife has a masters in education and taught 40 years. Before me she was a widow who easily managed her own affairs and amassed thousands in savings on a teacher's salary. Fortunately I've set almost everything on auto billpay and she shows no interest in bills, except she panics when our dentist sends a "balance due" email after insurance pays their part. She would never be able to get into an online account and the last time she tried to write a check, she needed my help to complete it. So I'm lucky there. My wife is on no medications for dementia since there is so little evidence for significant benefit, but I understand the desire desire and reason for trying the limited "treatments" available.

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@wctdoc1943 We're mostly on bill pay too, so I don't know why my husband is going into the accounts - and going into the bank statement, and paying it again. Yes, the payment goes to principal, but it's a double pay on $ we don't have.
He has this system or so he thinks, that he checks off in his folder, everything that has been made by month. It gives him something to do, as long as he doesn't resend payments. I'll have to figure this one out, as I hate to change the passwords again where he has no access. I just have to have a better way of what I say to him so he doesn't think I'm taking the bills away from him. It's got more to do with letting him okay, still go through his checking process BUT anything outside of auto pay, I pay vs. him.
Thanks for responding.....Karla

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Profile picture for labrown @labrown

They say patience is a virtue🙄
My husband use to enjoy his phone, especially the you tube videos. It certainly helped to keep him occupied. He was always interrupting me to help him with it. At that time it seemed to be an annoyance to me. Today he can’t use his phone any longer, nor can he turn on the TV or change the programs. His world is becoming smaller and it’s harder to find things to occupy his time. Help your wife to be able to enjoy things all you can while she still can.

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@labrown Thank you. It is sad and difficult to see their world shrink. My wife does crossword puzzles all day, thinking they keep her mind "sharp". I'm sure it helps a little in some way, but she has to cheat by looking at the answers and starting with the first letter of each response filled in. But I cannot get her to go for walks with me, which might be more beneficial. Such a cruel disease.

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Profile picture for moea @moea

@wctdoc1943 Thank you for your post. It resonates with me as well. Patience is very thin at our house. Add in a dose of anger, frustration and loneliness and that describes my issues. My spouse is still labeled mild AD, but I do see some negative changes in behavior lately. He is losing his ability to use his phone for texts or calls, and he never checks his emails. We had a "dust up" the other night about the temperature of the hot water from his shower. That scared me enough to think he didn't know how to regulate the temperature any longer. I have called a plumber to lower the temperature, and am suggesting my husband move his showers to the morning. Although he didn't remember the exact issue of the argument we had, it bothered him that we went to bed angry, and he apologized today. He was always the sweetest guy and this reminds me he still is that person. It can be heartbreaking to witness these changes. I vow that I will walk away the next time he shows behavior close to anger. Arguing or challenging a dementia patient is not a good idea. I know it is up to me as a care partner to change the dynamic. This is so hard and we are only human. I am much better at this when I take time for myself. My spouse does better when he spends time with other people, and exercises daily. We try to eat a very clean diet and avoid alcohol too.

@kjc48 Currently my spouse is on a maintenance dose of Lecanemab as his CT scan showed a huge decline in his amyloid plaques. I do believe based on the results that the drug keeps progression down. We do not have any data re Tau levels currently though.

Take care of yourself and thanks for listening to me...

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@moea Thank you for responding. All those emotions are prominent with me too. I miss having normal conversations about meaningful things. Our interactions are often confrontational or turn into confrontations. It's tricky to navigate. I have learned that walking away or at least not engaging in confrontation is the best thing for me (us???). Most of the time she quickly forgets what it was about. She threatens to move into the guest bedroom all the time and an hour later she doesn't remember why her pillow and gown are in another room (I'm not telling-LOL).

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Profile picture for judimahoney @judimahoney

@moea
Maybe we should start a music group, and call it Anger, Frustration and Loneliness, and we can all wail about these feelings and have a way to vent our strong emotions.
Tra la-la. 🎶 🎵

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@judimahoney Ha! I like your idea. Don't know if you're old enough to remember tha old TV show Hee-Haw, but they used to do a skit, accompanied by a sone that went something like, "Gloom, despair, and agony on me....if it weren't for bad news, I'd have no news at all....(gloom, despair and agony on me). Some days are like that (a lot of days, and nights, too). But we're here, so we aren't alone.

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Profile picture for judimahoney @judimahoney

@moea
Maybe we should start a music group, and call it Anger, Frustration and Loneliness, and we can all wail about these feelings and have a way to vent our strong emotions.
Tra la-la. 🎶 🎵

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@judimahoney Great idea! I call drums!!!! I wanna bang on sh*t until I'm exhausted!!!!! No one wants to hear me sing, though.

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Profile picture for wctdoc1943 @wctdoc1943

@judimahoney Ha! I like your idea. Don't know if you're old enough to remember tha old TV show Hee-Haw, but they used to do a skit, accompanied by a sone that went something like, "Gloom, despair, and agony on me....if it weren't for bad news, I'd have no news at all....(gloom, despair and agony on me). Some days are like that (a lot of days, and nights, too). But we're here, so we aren't alone.

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@wctdoc1943
I do remember that song! 😆

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Profile picture for cyds @cyds

@judimahoney Great idea! I call drums!!!! I wanna bang on sh*t until I'm exhausted!!!!! No one wants to hear me sing, though.

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@cyds
You're in!

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Profile picture for cyds @cyds

@judimahoney Great idea! I call drums!!!! I wanna bang on sh*t until I'm exhausted!!!!! No one wants to hear me sing, though.

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@cyds I wanted the drums…you beat me to them😉

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Profile picture for labrown @labrown

@cyds I wanted the drums…you beat me to them😉

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@labrown maybe congas or bongos….?

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I'm so sorry that your wife is having these problems understanding her phone etc. It must be very hard for her to have problems with something she probably used to do normally. It's good that you realize that you need to have more patience with her. However, sometimes that is very hard to do. Ask God for help and guidance. He will be there for you and your wife. Also remember there may come a time when you may not have that time with your wife. Enjoy every day and moment with her. Tell her how much you love her while you still can. My husband died of lung cancer in 2024. We told each other often how much we loved one another. I'm glad to have those memories because now at age 80 that is all I have.
I'll say a prayer for both you and your wife.
I wish you the best.
PML

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