Boundaries with dementia patient

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.

Hi Scott, yes, it’s so important to take care of ourselves.🤗 I’m started to worry about the fallout from caregiving. Noticing impact on close loved ones. It’s just such a hard disease to navigate 💔

Hi, @gratia and @scottrl I'm Scott (also) and was my wife's caregiver for her 14+ year war. While I have no magic tricks for caregivers, here are a couple of things that helped me.

Regarding the phone, I turned our ringer off and ignored incoming calls at times. It really helped.

As to goals, dream, etc. I had to do a hard, and fast, change. The disease does not listen to any one and the demands of caregiving are ongoing and at times overwhelming. I found, since I was the healthy one, who could think logically, it was up to me to be pragmatic about the future and how it would bear little resemblance to what we had envisioned pre-illness. I adjusted some goals down to simpler ones, discarded some, and delayed all of them while caregiving, since my wife required care more than I needed to try to keep old goals alive.

I did begin a "To-Do List" for the inevitable days when I would suddenly be alone with time for myself. I still keep that list going, promising myself to knock one off a day, and then before bed, add a new one to the bottom of my list.

Strength, Courage, & Peace

Gratia, You first have to know, I believe, what phase of the disease your mother is experiencing prior to setting boundaries. Is she mobile, verbal, fairly conative or barely able to help herself at all. Are you are the sole, or primary caregiver, if so, your only boundary is to insure you are taking care of yourself- - - - - So that you are able to take care of your mother. You know, just as she did when you were an infant. What you ae faced with will probably be the hardest job you will ever face, however, as in my case, you will also find it the most rewarding. Hopefully, you have professional clinicians assisting, that you can call on for advice and some respite periodically. Also, as you know, there will be a lot of good advice coming your way from the many who post on this cite. Best to you and your mother - Please, don't set too many high boundaries, they may come falling down around you.

@gratia I think a boundary is whatever we want it to be on any given day. Seeking out peace for an hour. A walk for 30 minutes to capture that beautiful green door shot you took. Or those sunny yellow daffodils that bring all of us joy. And signing onto Mayo Connect first thing in the morning, to get our sliver of hope before our day starts. Boundaries only apply in certain situations, as in caregiving, there are just things we simply have to do that we don't want to do. So the boundary becomes, for example, if she's unkind and rude on that day, just walk away. Or find something soothing, like music, for her and for you, and then walk away. Let the music fill her soul, and try to keep her calm. The boundary might be foregoing all the extra work in the kitchen, and selecting nutritional convenience food, already prepared, that still gives her a good meal but doesn't wipe away every bit of energy you have left. The boundary might be getting someone else to bathe her. As for your identity, your feelings and the like, they're still there. Workload is exhausting for people. And caregiving is workload. So, the boundary becomes like you did, getting your sister to help. taking that much needed trip like you did, but maybe doing it, once a month and let your sister and some companion care take over. Changing the venue, I believe, keeps you, YOU, and intact, so you can still do some of the beautiful things you used to do, that make you YOU. Find the joy in quiet moments. As for your goals and dreams, that becomes an adjust and adapt for now. Nothing stays the same forever although when we're dealing with it, it feels like an eternity. Chin up, take those beautiful pics, and just continue to share your thoughtful and meaningful posts. It's good to have @gratia on this site.
Best, Karla

Gtatia, Forgot to mention that the Alzheimer's Association can connect you with agencies that offer financial assistance for respite care. Call their help line at 800.272.3900. In NJ they offer $1000 support for use in respite care, it may differ in other locations but is worth a try - Please call them, it may provide you with a little break from the daily routine.

@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. 🌺

@scottrl , u may find that verbal boundaries are simply not remembered. Letting the call go to voicemail and setting up your phone to silence automatically during sleep time works better

@kjc48 Dear Karla, thank you so much for taking the time to write this thoughtful response. The sleep deprivation/exhaustion really does a number on my mind and I start to feel “off”.
I appreciate your understanding and the suggestions you give are all very realistic and manageable. I need to work on “acceptance” some more. It’s the unknowns and the unpredictability that make life very hard on all dementia caregivers.

It makes me feel better knowing that the photos I post can bring a moment of joy. I know that so many are struggling and each situation is unique. I’m grateful to have found this community and all of the kind souls to walk this “wild & wooly” path with! Feels a little less lonely out here 🤗❤️

@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. 🤗❤️