Boundaries with dementia patient

Posted by Gratia @gratia, Sep 13 8:22pm

Hello friends,
I’m curious whether you struggle with boundaries.

While caring for a loved one with dementia, everything revolves around them. They only focus on themselves, having forgotten and not realizing what you’ve given up to care for them.

How do you protect your identity, your goals and your dreams?
Just asking for a friend. ❤️🤗

Interested in more discussions like this? Go to the Caregivers: Mild Cognitive Impairment (MCI) & Dementia Support Group.

Profile picture for Scott R L @scottrl

Good question.

I have a friend whose dementia is getting worse.

She calls several times a week, and doesn't remember the conversations.

I understand that she's facing tough and scary times. But I'm disabled myself; I sleep very poorly and an in constant pain.

I feel bad about ignoring her, but I know a drowning person will kill you to save himself.

I hope there are some good suggestions here.

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@scottrl Answer when you feel like answering. Say goodbye with little white lies. Oops have to go. Don't totally ignore her.

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Profile picture for Gratia @gratia

@judimahoney Hi Judy,
Absolutely you’re right- I usually just ‘go with it’, but I do have my weak moments where I wonder how did this all happen and where did my life go. You seem to have a great balance and I love your flexibility and the way you are so compassionate and understanding. I’m trying to do better but some days I just feel defeated. But it’s just a passing mood. The tiredness makes it really hard. Thank you for your positive energy and your voice of reason. It means a lot to me. 🤗❤️

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@gratia
Thank you. I need to hold on to your positive words as a form of meditation. My therapist recommended meditation, and I've tried, but can't keep the monkey brain at bay and my thoughts wander (usually worrying about, planning or deciding something rules my thoughts). I have no patience for traditional meditation that requires quiet time alone (not happening typically), and focusing on quieting my mind seems an unrealistic task.
So repeating your words of support and encouragement, and all those that others on this site offer me, truly are what keeps me semi-sane these days.
When I am screaming and ranting and having a hard time controlling my reactions, I do try hard to:
-stop
-breathe (e.g. square breathing I think it's called)
-leave the room (if I'm sure my husband won't escape, and that he's safe)
-do something just for me
I am finding it a challenge to even carve out the time for self-care some days, but I will always try.
All the best to you. 🌻

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Profile picture for Gratia @gratia

@mydaniels I agree and we are keeping our mom at her home and we have a routine and do everything to keep her comfortable. It can quickly be draining and exhausting because she needs 24/7 supervision. But she seems to be doing well. I worry more about my sister and I because lately we are burning out. We are working our schedule to make it more manageable. It’s a sad disease for all. 🤗❤️

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I hear you. Sometimes the one we careing for can out live us. Take care of yourself physicallyand mentally. Set aside sometime to meditate on the clouds and birds cherping of necessary. I do! Youtube is a good teacher. Instead of turning to sweets eat something healthy you enjoy ,but Always remember as you take care of your mom remember to do for yourself as well.😉@gratia

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Profile picture for mydaniels @mydaniels

I hear you. Sometimes the one we careing for can out live us. Take care of yourself physicallyand mentally. Set aside sometime to meditate on the clouds and birds cherping of necessary. I do! Youtube is a good teacher. Instead of turning to sweets eat something healthy you enjoy ,but Always remember as you take care of your mom remember to do for yourself as well.😉@gratia

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@mydaniels thank you for the positive reminders🤗✨❤️I do get out for a walk when possible and focusing on nature is so helpful- fortunately there are a lot of trees and birds in the area.

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Profile picture for judimahoney @judimahoney

@gratia
Thank you. I need to hold on to your positive words as a form of meditation. My therapist recommended meditation, and I've tried, but can't keep the monkey brain at bay and my thoughts wander (usually worrying about, planning or deciding something rules my thoughts). I have no patience for traditional meditation that requires quiet time alone (not happening typically), and focusing on quieting my mind seems an unrealistic task.
So repeating your words of support and encouragement, and all those that others on this site offer me, truly are what keeps me semi-sane these days.
When I am screaming and ranting and having a hard time controlling my reactions, I do try hard to:
-stop
-breathe (e.g. square breathing I think it's called)
-leave the room (if I'm sure my husband won't escape, and that he's safe)
-do something just for me
I am finding it a challenge to even carve out the time for self-care some days, but I will always try.
All the best to you. 🌻

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@judimahoney Yes Box Breathing, deep breath for 4 seconds, hold for 4 seconds, exhale and hold or 4 seconds. We learned that in our caregiver glass.
Best, Karla

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Profile picture for judimahoney @judimahoney

@gratia
Thank you. I need to hold on to your positive words as a form of meditation. My therapist recommended meditation, and I've tried, but can't keep the monkey brain at bay and my thoughts wander (usually worrying about, planning or deciding something rules my thoughts). I have no patience for traditional meditation that requires quiet time alone (not happening typically), and focusing on quieting my mind seems an unrealistic task.
So repeating your words of support and encouragement, and all those that others on this site offer me, truly are what keeps me semi-sane these days.
When I am screaming and ranting and having a hard time controlling my reactions, I do try hard to:
-stop
-breathe (e.g. square breathing I think it's called)
-leave the room (if I'm sure my husband won't escape, and that he's safe)
-do something just for me
I am finding it a challenge to even carve out the time for self-care some days, but I will always try.
All the best to you. 🌻

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@judimahoney
I try to have a routine of doing a meditation each morning for 20mins or so to start the day in the calmest frame of mind possible. “Monkey brain” is a problem for me also. I have tried many types of meditation through the years and there are a lot of guided meditations which I find work really well as all I have to do is listen to the words and calming music. My favorites these days are by Tony Stockwell and Jeffrey Allen some of which you can find on YouTube. Also there are a lot of apps available for meditations. Some evenings before bed when I am exhausted from answering the same questions over and over and general frustrations of being “cruise director” and just trying to manage the day, I go to meditations that help release the accumulated energy and stress. Some work better than others on various days so it good to try a few. This has become my good-to method of keeping as much on an even keel as possible, shedding the tension and releasing the energy of the day. Hope this helps and you find something that works for you! Best-

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Profile picture for judimahoney @judimahoney

@gratia
I have had to set firm boundaries. My normally docile husband doesn't usually give push back when I name a boundary, but when he literally pushed me back (when he wasn't getting his way), I contacted his Doc and he's now on an anti-anxiety med.
When my husband wasn't as far along I would not always go along with his requests, but I do try my best now to go along so he doesn't get agitated.
Just one small example: my husband walks multiple times daily on our property. My life and routines then kick back in with my 10 minutes of reprieve while he walks the loop. When he returns I'm usually listening to the radio (can't stand a quiet house). He then announces he's going to play guitar or watch TV, so I turn off my music and just let him do him. I used to say things like, "I always do what you want and you always get your way, you'll have to wait" or something like that. Now I just turn off my music and go along; it's just easier. With that example there is no boundary anymore, but when he wants to walk outdoors and it's too hot, then the boundary becomes firm and I tell him for his safety he'll need to wait till it cools a bit.
If you have kids then you know you have to choose your battles.
My boundaries have changed as my husband has changed, but it's all about keeping him safe.
My role now no longer resembles wife, now I'm like his Mommy. It made me uncomfortable when he began asking permission to do this or that, now I just go for it.
All the best to you. 🌺

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@judimahoney
Sometimes I feel like Mommy too and he acts like a petulant child. Very sad.

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Profile picture for rising @rising

@judimahoney
I try to have a routine of doing a meditation each morning for 20mins or so to start the day in the calmest frame of mind possible. “Monkey brain” is a problem for me also. I have tried many types of meditation through the years and there are a lot of guided meditations which I find work really well as all I have to do is listen to the words and calming music. My favorites these days are by Tony Stockwell and Jeffrey Allen some of which you can find on YouTube. Also there are a lot of apps available for meditations. Some evenings before bed when I am exhausted from answering the same questions over and over and general frustrations of being “cruise director” and just trying to manage the day, I go to meditations that help release the accumulated energy and stress. Some work better than others on various days so it good to try a few. This has become my good-to method of keeping as much on an even keel as possible, shedding the tension and releasing the energy of the day. Hope this helps and you find something that works for you! Best-

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@rising
Thanks, fellow cruise director! 🚢

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Profile picture for judimahoney @judimahoney

@rising
Thanks, fellow cruise director! 🚢

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@judimahoney
lol… yes life is full of adventures isn’t it? - we never know from one day to the next which direction we are going to be sailing in. We will hang in there and be kind to ourselves - we can only do our best. Take care!

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