How do caregivers deal with the worry, negativity and defiance from the loved ones they're caring for?

We stepped back, got mom to assisted living and let them take the heat.

Thank you Pamstegma. I apparently forgot to add that the folks insist on staying in their own home.

You ask a question that probably many of us have asked ourselves. And, perhaps like me, we're still battling with those issues.

I wish there were some good answers. I think a lot depends on individual situations, but there certainly are commonalities. However, I don't think there are perfect or sometimes even good solutions for a lot of situations.

Learning to modify expectations is a major part of caregiving. Accommodation w/o sacrificing standards is another challenge.

From what I've read here and experienced in a few personal situations of others providing care, so much depends on how the individual feels about caregiving in the first place. And a lot of that depends on how much, if any, support the caregiver has.

I've met a few people who really feel this is a privilege that they can perform for their loved one. These are the really, really religious people. I'm obviously not one of those. I see benefits to caring for someone, b/c they're family, they need and appreciate the help. But I don't include martyrdom in those benefits.

I think you have to find outlets and plan on respite time which might be needed at a moment's notice. My mood and coping capability increases markedly after watching PBS marathons of classical and operatic music. (Luciano, thank you for being such an extraordinary tenor!) I actually look forward to their fundraising marathons because there are so many good programs resurrected to solicit donations.

For me, it's something so engrossing that it redirects my thoughts.

ALzh, what did you used to do before caregiving? What activities were favorites? What so completely engrossed you that you could do it and forget about time passing? Those are the activities to which you might turn.

As to specific safety, health and well-being issues, that's a broad list, with equally broad manifestations and countermeasures.

What I've tried to do for the first two is imagine worst case scenarios and plan for them. But I've met with resistance on some, and those plague me with nightmares. Resistance frustrates and sometimes irritates me (and unlike with the Borg, it's not futile - it's effective in raising my anxiety level).

Well-being is a bit easier; I've planned trips to free outdoor concerts (when it was easier to travel short distances), drives to the local park after it's closed to view the fall scenery and watch the geese, ducks, swans and boaters (it's very, very peaceful). Sometimes we drive down back roads, kind of a "Memory Lane" trip.

Music from pre, post and the WWII eras also are Memory Lane trips, and they're soothing.

Dairy Queen visits used to be the culmination of medical visit days, but they're off limits now b/c of dietary restrictions.

For me, I read, a lot. I design gardens which I'll probably never have the time or strength to create. I design quilts which I'll probably never make unless I live to be 90. Still, I dream, and that refocuses anxiety and frustration. And it's soothing, plus it's creative and stimulates my brain to think positively rather on a reactionary level.

I also try to configure caregiving into a project I might have done while working; that puts some distance between the issues and me, if I can successfully do that (and it's not easy).

All of these are soothing and relaxing.

And yet, still, when I'm totally frustrated, I hit the chocolate. Not a good solution at all, but it's a temporary pacifier.


Adding....same issue with staying in the family home, although that's given me leverage in getting tasks done, safety installations made, etc.

Alzh101, my parents, especially my Mom, had refused to downsize into something more senior accessible.

You are so right about the possible doom and gloom, and all the constant worrying. I bet you rarely get a good night sleep. I know I didn't. I wasn't a happy camper for many years during this journey with my parents. Thank goodness they lived in their house, and I lived in mine.

One needs to set boundaries. I didn't realize that, and found out I was enabling my parents to continue to live in their house. I was the one who did all the running around for appointments, groceries, taking Dad to Home Depot, etc. I just couldn't say "no" to my parents.... so I had to change my lifestyle so that they could continue theirs.

You will have to do what many of us were or are doing, wait for a medical crises to happen. Then and only then will your parents realize they can't remain in their home unless they hire caregivers. My Mom refused outside help, no way no how.

One crises came and went, and no change. The second one did it, my Mom seriously fell and found herself living in long-term-care as she could no longer care for herself. Poor Dad felt so lost without Mom at home, he did hire caregivers, and eventually after Mom passed, he sold his house after moving to senior living.

Even if they are in Independent Living, or in Assisted Living, or in a Nursing Home, you still panic when the telephone rings. And you feel the guilt because in many cases the parent isn't happy in their new home. Sigh.

Thank you all. I do attempt to do the things that brought me peace/ joy before. It just seems like even while doing things that used to calm me, I can't shake the nasty comments that replay in my mind like a broken record along with the recording of "take care of me". Apparently my siblings are taking care of themselves, but that's easy for them since I'm the one who gets all the calls when things go wrong after the part time caregiver leaves. I guess I'm just beyond burned out and now have to deal with my own health issues that have popped up due to chronic stress. I do appreciate the feedback. I know in my head I have to physically remove myself from this role and stop enabling the folks along with my brother who has POA.

Sounds similar to what I went thru. When Dad's partner went to hospice, I kept him in his home for two months with a frantic schedule of care-givers & mostly myself there, when I actually live 35 minutes away. Then I said no more... packed him up & brought him to my house, where he stayed for 6 months before a hospital stay, then rehab, & now Memory Care. To get him out of his house, I told him the truth: I couldn't provide 24-hour care nor be on call when others didn't show or I couldn't arrange someone, the POA doc made me responsible for his well-being, & that a well-meaning neighbor would end up calling adult protective services, & then all options would be out of my hands. So, reluctantly he came home with me.

"non-compliance and defiance"

I almost fell into this with my father but thankfully stepped back and asked myself, how is this any different than when I was young and he was telling me what to do?

I started letting him make his own decisions and explained that I do it differently. I told him, do it your way and if it doesn't work, WE will find another way.

I had no problems with him after that and he lived another 4-5 years.

These comments are pure gold. I could just cry with joy I found this community! ❤️❤️

What GardenArtist said - the distraction for me is video games. I know, it's adolescent, but some of the first-person role players are pretty engrossing. Luckily my husband shares this interest as well.

Another idea might be a couple of days away. Where I live there are state parks with reasonably priced seasonal lodges with foliage, water views, etc. It really helps me to just leave town, even if it's only a day or two.

SUCH a hard thing to deal with, that parents either don't realize or frankly don't care what we do to provide for them... you both lose the support system you've had all your life and are placed into the role of providing everything instead. I am so thankful for my spouse, and cousins.

Alzh101 - post here if you need specific feedback on learning to stop enabling.  It is HARD.  They want what they want to make their own lives easier, we can relate. In my own case I started setting specific boundaries as to how long I was willing to listen to problems and negativity on the phone (my mother has FIVE sisters in their 80s, another in her 70s, and there's always a long laundry list of what's wrong.  Also, four of my cousins or their spouses have cancer.  I know, it sounds unreal.)

 At first I got the old "you don't care about your family" nonsense, but I stuck to it and now Mom knows better than to try to call and whine to me for hours.  If someone is in the hospital, that's one thing, but if we're just talking about difficulties with someone's meal service or something - I'll be glad to talk about specific options and what we're going to do to fix the problem, but I will no longer make space mentally for how awful it all is or how terrible it is that X person is having the issue.  We are where we are.  It certainly isn't MY fault that most of these women didn't save for old age or that all of us get old and feeble.  If I get "you don't care," usually coupled with "you don't know how it feels to be old and sick," I counter with something like "you don't know what's like to care for SEVEN old people" (her siblings cared for her own parents, dad's siblings cared for his parents, she did zilch for her grandparents... lived in another state and did what she wanted.  Must've been nice.)

For me I did several things to cope with the negativity. One he couldn't even move to my city until he agreed to be on antidepressants and anti anxiety agent. That helped lots. But still he goes into spins of things are awful, etc etc. so when my mental health was suffering, I de died that I would no longer answer the phone from dinnertime on. That was my and my husband's time. The calls were always a complaint that could wait till the next day and if not he left a voicemail and I'd listen and decide if it needed action. Mostly he forgot he ever called me by the next day.
Then, when I was at a breaking point from stress due to his appendectomy at age 95 and increased issued from anesthesia, I sought the service of a counselor. What a relief to unburden and not have to talk about it to a friend or sister. She let me spill it all and was kind, carin, non judgmental and helpful. I also try to do nice things I enjoy doing and set aside "me time." I also "triage" the needs and decide what's important and in what order. For instance I haven't seen him in 3 weeks because my husband just had 5 medical procedures in the last 4 weeks. That coupled with my PT appointments and dad's dental appointments for new dentures caused me to have a meltdown one day. I couldn't take anymore. So dad went on the back burner. He's in AL, and so let them handle things...that's why he pays the big bucks.
I will admit I've even disconnected on my phone when he was being mean and yelling things at me and accusing me of things. I've learned I have a right to be me, have a life and providing care for him shouldn't kill me. Don't know if any of this is helpful. But decide what you will and will not tolerate and don't enable!! Best to you on this journey.

"worry/negativity/non-compliance and defiance"? That describes my aged mother precisely, and I went through a very dark period trying to help her. However you do it, your close involvement with your relative(s) to the extent it affects your health and well-being just has to stop. They/she/he don't or doesn't want to go to an assisted living? Sorry, but that was THE answer, and I think the only answer, for me. She went and she's about 60 miles away, so I visit once a week. That works for me, because she is just too toxic to be around any more than that, and, after seven months there, she's getting used to it. That was the only solution for both of us to survive. It might be yours, too.

Ive been the biggest enabler ever !!

Today... I'm drinking Coronas, soaking up sun in a baby pool, lidtening to high school music from my time ( 36 yrs ago) !
By myself, having a blast!!!!!


Kicking my caregiving role in the butt

at least for today 😝

Thank you all again for feedback. I've decided I'm moving out of state which will force something to happen that the folks my not like. I'm not the POA but have been doing everything for both parents. You are all correct. My health comes first. It is a huge undertaking to care for people with dementia as many of you know. Moving far away is the only way my other family members will realize what it is like to be on call and relied on by people in adult bodies with the capabilities of young children and defiance of toddlers.

so jealous of you... being able to leave with someone else to step up... I would do the same in your position like a shot...

Lots of good comments and insights here. I was particularly struck by Hellebore's comment that "you both lose the support system you've had all your life and are placed into the role of providing everything instead".

That's something I've thought of often, along with the fact that the dynamics of interaction with people from times when I was working to today are much different.

This is a bit off topic, but I think the loss of a support system is critical to understanding the isolation and sometimes desperation felt by caregivers. I used to never worry about driving in the evening or at night because family or friends would help if I had car trouble, just as I would help them.

That support is now gone; unless it's an emergency, I try to avoid driving at night b/c if the car breaks down, there's no one other I can call other than AAA to haul the car and me back home. Knowing that there's no one to rely one changes one's perspective on evening activities. And its isolating.

The rest of Hellebore's comment about doing everything ourselves is another reason for feeling overwhelmed, burdened and often isolated. There's no team, no family, no friends to help. Just us.

So instead of being part of a group, or network, suddenly we are the entire group ourselves, facing challenges we likely have never faced before. It's an incredibly overwhelming feeling of obligations.

Hellebore, although I am physically removing myself from the constant stress of caring for both terminally mentally ill parents, it is nothing to be jealous of. I'm leaving because my own health has deteriorated and someone else (family, POA or even an outsider) will have to step in. Every person dealing with caregiving has to look out for his or her self first. ( I learned this the hard way) It is true, that when a plane is in trouble and air masks drop, in order to be able to help anyone, you have to put YOUR mask on first or you will be of no use to anyone, including yourself.

Thank you GSP. I forgot to mention that memory care places in Calif charge close to $6k a month per person. So for both folks going, it's a good $10-12k a month. That's a huge issue for us ( as I'm sure it is for many other families) in an effort to spread what limited funds the folks had, I thought I could be their caregiver for as long as possible. Although I "enabled" the folks to stay home, I also inadvertently enabled the rest of my small family to allow ALL of the caregiving to fall on me. I cannot do it anymore and according to people in my support groups, I just have to remove myself from the situation,( tough love) in order to make something else happen.