Since the start of the year I have stepped back a bit, then a bit more, then many many steps back. Now withdrawn mostly all hands-on help. (Now just arranging appointments etc via phone/email, assisting with organisation type things).
I felt bad stepping back from my sister but her needs are like a bottomless pit, and the more I helped the more dependent she became on me.
Now I just feel angry at even the slightest small request made of me, or watching her make requests of our 76 yo Dad.
(She has disabilities X3: mild intellectual disability, severe mental illness & stroke. Poor diet, poor mobility & incontinent).
I must seem so uncaring... I just seem to be all used up...
what you are experiencing is totally normal.
A part of hands on 24/7 caregiving is that you tend to ignore yourself, your needs, and anything that is about you. This is why we see CG's dying before the person for whom they are caring.
Dh has had multiple health issues for the past 13 years+. Some incredibly awful, some minor, but still requiring me to stop what I was doing and take care of him.
The non-stop stress has gotten to me. He doesn't think it's a big deal--in fact has criticized me in front of the kids (and drs and nurses, for that matter) for NOT being there for him 24/7 for every ache and pain. In truth, I did the very best I could. If that wasn't good enough, I don't know what to say.
Now, in a reversal of roles, I was just dxed with cancer. I told him and he just....couldn't deal with it. I was pretty upset, and asked him to please tell the kids for me and he refused. Said it was my 'battle', which it is, but I think he could have done this one thing for me.
I should have put him in a cardiac rehab facility last year when he had 2 heart attacks, but he made the decision to come home where 'my wife will care for me'. I DID NOT want him home. He was so depressed and so horrible to me--I have just now (9 months later) begun to emotionally feel something towards him besides anger. My compassion bucket was empty.
We have to sometimes be our own caregivers and not expect a single thing from others. I have 5 kids, I hope they give me 1/10th of the worry and care they have given their dad over the past years. I've always had to be the tough one.
Slowly the ability to care for someone comes back. In my experience, it will take between 3-18 months, depending on the relationship going into the 'trauma' and the patient's personality and yours.
Taking care of yourself is hard. I have a really hard time doing it. And now I am facing 3-6 months of needing care myself. Don't know how that will play out.
Truthfully, if we don't take care of ourselves - have compassion for ourselves, be kind to ourselves - no one else will. Compassion fatigue is a warning, and I urge you to heed it and correct course so that you don't get sick.
That right there validates my feelings & backs up my need to step back. Preventative is better!
Thank you
I lost my compassion to a point too. I think its a survival mode.
Why do some folk get so needy like that? I wonder if they were always like that, or their needs increasing shapes them or what.
I am like you, stepped away from caregiving altogether. For me it was my dad. I was his 24/7 caregiver in my home for 2 1/2 years. His outside caregiver for 2 years prior to that while he was in facilities, as well as one for his wife for that time until her death. I have four children at home. My dad sucked everything from me...compassion, motivation, self-security. He was very lazy and entitled...he had a moderate physical disability due to stroke. But he acted as tho he couldn't do anything for himself. So I did everything on top of trying to still raise kids, keep a marriage together, sometimes try to work and/or go to school. I finally stepped away altogether. The first step was care facility after he had more strokes. Then after his Medicaid was approved. Finally when my phone broke and he couldn't call me anymore.
I felt extreme guilt at first. So much so that I started seeing a counselor to deal with it. My dad lashed out big time when he found out he couldn't return to living at my house. After a while, my counselor helped me see I was suffering from extreme caregiver burnout. I started recognizing the abuse he heaped on me, and the enabling I was doing to "keep the peace." He started doing for himself once I left the picture. Even got himself placed in a different facility when the first one was unacceptable to him. When I had to bring some of his personal things to the new facility two weeks ago, he latched onto me again wanting me to do things for him that I know very well he can do himself. So the cycle has begun again, and it's agreed between many of us that I shouldn't enter the picture again for a long time.
Your sister will be cared for, it just doesn't have to be by you. You should not sacrifice your wellbeing. I can personally tell you that my mental health dived considerably during the time I cared for my dad, and it's taking forever to get back to typical. He's been out of my home and care for 6 months...thought I'd be happy and celebrating and getting my life together again already. Instead I'm still dealing with fallout. But hey...I'm on my way! And you are too!!
I'm glad a councellor was of help to you. I also took that path at the start of the year.
I am also glad your Dad has been able to do more for himself - good for him. (Totally feel for you & how hurt & used you could feel).
I love that you are "on your way now". Me too.
Unfortunately my sister, and yours (?) didn't get that memo & have a narrower view. Maybe it's a survival thing (the self-centeredness).
I hadn't thought about a *priority list/much left over* like that before. But makes sense. Thanks.
My sis comes AFTER my kids, husband, Dad & Mum when I think about it. Her needs are huge so her reality is she will need to have assistance from other sources (as does your sis).
My decision to step back feels validated, more practical & necessary for my own health (instead of just feelings of guilt).
In fact, now with a bit of space, I can see that all the things I was doing were just enabling sis to keep her pretend independance up. Now we shall see what holes appear & if they can be patched over with the string of carers that come & go (3 x 1 hr visits per weekday, 1 x hr weekend).
Ten years she has lived out of our parents home. Ten long years that Mum & Dad have set this up & enabled this situation to continue. We have at least transistioned to paid carers now for a lot, but I have set some new boundaries & (nervously) wait for them to be tested.
I shall endeavor to be kind to myself & allow time for compassion bucket to heal & refil.
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