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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 Now withdrawn mostly all hands-on help.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...

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It takes time. I think my mom was in the NH at least six months before I felt I could breath again, it was at least a year before I really began to regain any tender feelings for her. She died in Oct and I'm only now beginning to look beyond her final years and remember her as the woman she was before.
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JoAnn29 May 26, 2019
This is true. I think u kind of harden urself so you can deal with the changes. You become the mother, LO the child. With me, it was something I had to do and really didn't want to and didn't know how long I was going to have to. I went from babysitting an infant 5x a week or 18 months right into caring for my Mom 24/7.
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Beatty-
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.
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JoAnn29 May 26, 2019
So sorry to hear about your diagnosis. Tell your kids you will need help. DH too. Haveca Dr. explain things to him. My Dad was like ur husband. Always thought his wife could do it. She did.
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I got my compassion back by having compassion for myself. After countless sleepless nights, countless times waking up at 3 am with my inlaws on my mind and unable to fall back asleep, and countless stressful conversations with my inlaws and/or husband about his parents, I got sick and it took me a year to recover my health. Mid said it best: "My compassion bucket was empty"!

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.
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Beatty May 27, 2019
"Compassion fatigue is a warning..."

That right there validates my feelings & backs up my need to step back. Preventative is better!

Thank you
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No, not uncaring, its just we can't be everything to one person. I believe we do a person no good if we don't make them do for themselves what they can do. I have a friend who volunteered to visit the elderly who were shut ins. She lives in Terra Haute Indiana. The woman assigned her lived clear across town. The woman was fairly independent. What was suppose to be a visit ended up can u do this can u help me with that. To the point the woman started calling her at home asking if she could do something for her. My good hearted friend did these things until she noticed the woman was doing less and less for herself. The woman was relying on her too much and losing her independence. Like u, my friend started backing off and eventually asked to have someone else assigned to the lady. I have been there and others too. People find someone who is willing to do and latch on.

I lost my compassion to a point too. I think its a survival mode.
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Beatty May 27, 2019
"Survival mode" makes sence. So much good advice here.

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.
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Everyone's right. You're not uncaring. You're burned out. You needed to take some steps back. You recognized that and you did it so you can take care of yourself. Taking care of ourselves is not a luxury, it's a necessity. That's not some new-age, self-help concept. It's essential. We don't have endless reserves of compassion, giving, caring. It is possible to use all of those up and the only way to get back on track is to remove ourselves from whatever situation is causing us to lose ourselves and regain our emotional and mental strength. We can't do that if we remain in the draining emotional onslaught day after day.
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Beatty,

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!!
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Beatty May 27, 2019
Miranova, wow you have really been through the ringer (as we say here) & must have an amazing heart. Thank you for sharing such a personal & hard journey. Stroke is so hard, there is the physical deficits but also how can you tell what's happened mentally as well.

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.
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I can so relate to you. My sister can not move from the waist down. She wouldn’t try to help herself. Wouldn’t follow Drs orders and now has made her children upset to the extent that they don’t come to see her often and I have my 90 year old mother with dementia to take care of, she wouldn’t help me with mother when she could and she lives next door. She now is upset because I don’t visit her but she lets her husband treat me like a leper. He won’t speak to me at all. I do what I can for her but my first priority is my husband , my mom and myself. There isn’t much left over.
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Beatty May 29, 2019
Sometimes a disability brings out strength, greater independance & inspires people to have greater empathy for others. A widened view of humanity.

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).
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Thank you all - experience is worth its weight in gold.

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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Hi Beatty, Don't be so hard on yourself,. It sounds like you have a lot on your plate. What you are doing by stepping back is self preservation. You can't help anyone else if you are burned out. Are you taking care of yourself? I don't know your situation but can you take a day off once and awhile and do something you enjoy? - go to a park, go for a walk. I recently started walking and it is great for dealing with stress. I was in a support group when I took care of my Mom (she lived with us). Once a week I would make sure I got everything done and take a day off. I would tell my Mom about this in advance. Sometimes I would get myself a cup of coffee and go to a local park or I would sit in my car and read - anything to give myself a break. It made a world of difference. It is like the old adage about being on an airplane with your child and the plane loses altitude: when the oxygen masks come down the mother puts her mask on before her child. You really do have to take care of yourself before you can give to anyone else and don't feel guilty about it. I was raised to put everyone's needs before my own. I am finally learning to take better care of myself. I said no this week to a situation that was not good for me. At first I felt guilty, now I am fine with it.
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What you are going through all seems normal and natural. Just don’t be hard on yourself.
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