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I'm sure you all have had friends and family who assume you are spending leisurely days at home, with nothing much to do.
Or, they lavish praise on you for being such a patient, caring, angel.
Or they assume you just like nurturing others, so they make requests of you to do for them in your "spare time".
AAAAGGGGHHHH!
I am no angel. I am quite selfish, and impatient. I was thrust into this role unexpectedly and do it only because I love and respect my husband so much, and as challenging as every day is, I still want to spend every day with him that I can.
I am physically and emotionally drained, EVERY DAY! No, I don't want to spend the few minutes I have free to take care of YOUR needs!
As a result, I find myself cutting ties with other people, which is not necessarily a healthy way to manage this. Setting boundaries is important and if anyone should offer to help you in some way - No one in my life ever has - then let them know what your needs are, or the needs of the person you care for. Have them try it for a few hours and give you a break. Hahaha!

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I am uncertain to know what they are saying to you. The response would be according to:
1. What is true for you
2. How much of the truth THEY want to hear from you. Or you want to tell.
3. Who they are and what they say.

I'll give you two situations:
1. Your Church member, in passing, says "I understand you are caregiving your hubby in the home. What an ANGEL you are".
They really are just passing the day and don't really want to hear all about it; that would be a conversation with your Pastor, not with them. So you would respond:
"Thanks, Irma. Yes, I am. And I am quite exhausted with it. Days vary. Sometimes I don't see how I can go on; some days are OK. But no angel wings are involved."

Situation #2.
Your good friend, who you almost cannot bear anymore because her life is one of wonder and travel with her hubby, says "You're so good with George; I don't know HOW you do it".
Correct response is going to be the truth: Maybe this;
"I don't know either, Joy. I am so exhausted. To tell you the truth I look at you and Ed traveling to Italy and I am sick with envy. I feel so alone. I am always tired and I don't really WANT to ask for help, to be a burden. But no one offers it either, and I just know they are afraid to get sucked into it. So they tell themselves its my choice, or they tell themselves "There but for the grace of God". I am sorry. I am losing friends because my own life doesn't match theirs anymore. They're afraid of me now, don't want to hear it, don't want to have to think about it. Still.........

You see what I am saying, right?
Because it ISN'T their life and they DON'T want to think about it and they DON'T want to know it can happen to them, and they don't want to feel responsible. And your life ISN'T like theirs now. They don't share anything in common with you anymore. You need to talk about this and they don't want to hear it and that's the sad truth.

Sadly, as long as you are a caregiver in the home, this is your life. I heard people here say they found a support group but could never even leave home to GET TO IT. What good is that? You are right to feel alone. You ARE alone. And at some point this is why I tell people "This isn't sustainable! You are trying to do what it takes several people each on several shifts daily. You cannot go on in this manner".

I'm so sorry. I know partially you're venting. It overwhelms like a pot on boil, and the lid has to bet lifted so the steam can escape. And briefly you feel a bit better.

Dr Laura always says "Not everything can be fixed". It's true. There's no good answer here. If you ask for help you will feel needy and you will lose people. If you don't you will have to hear (when they HAVE TO talk to you) what an angel you are. And they won't be able to escape you fast enough.

I don't have an answer. I don't think there is an answer except in your own HEAD as to how long you can go on. The heart will tell you forever. But the heart is a big fat liar.
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I’m not big on cutting people out of my life. I think it mostly only leaves me bitter and empty. The only time I’ve done it without looking back was with a truly toxic friend who was really no friend at all. For over 30 years we’ve had a son with a hypoxic brain injury along with many other health challenges from birth. We quickly learned people in our lives, including close family and friends, can only deal with limited information about him. We’ve learned to keep it brief and expect little in return. Should people be better? Absolutely! But they aren’t, and cutting them out accomplishes nothing, for they will understand even less. This doesn’t mean you need to hide the reality or not stand up for yourself and how you’re feeling. We’ve often told people of what we lost with our son we miss reasoning skills the most, for he cannot be reasoned with about anything, yet we still find ourselves beating our heads against that wall too often despite knowing better. It helps others get it a bit. We’ve also said we’re no saints in this, he’s a great blessing and a great challenge/frustration at the same time.
Turn down adding anything to your life you don’t want or have time for, minus any explanation or justification. One of my greatest lessons was “you don’t owe the world an explanation” Defend and protect your feelings as needed, getting run over only leaves you annoyed. Expect nothing from others, it’ll be a great surprise if/when there’s an offer of help, otherwise hire some help to give yourself rest and a break. Mostly, giving yourself the gift of true acceptance is huge, knowing people are flawed, unlikely to change, and mostly not intentionally evil, just ill informed. I wish you rest and peace
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I cared for my Mom for 2 yrs. I have no patience. I also have a touch of anxiety. Until you care for someone 24/ 7 you do not know what others go thru. And we usually do this when we too are Seniors.

When I first came to this forum, a woman had just lost a family member she had been caring for. Its been years back but I think she maybe in her 50s and had cared for a couple of people I think. Anyway, she said her Caregiving days were done. A family member felt since this woman had done such a good job of caregiving, she could now care for an Aunt. She said No and they were shocked.

I have no idea how you would deal with people like this. Other than saying, I am sorry, but I just have no time for anyone other than my husband and when I do get time to myself, I take advantage of it. I need that down time. If you cared for someone, you would know what I mean.
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I wouldn't cut ties with people without first educating them on what caregiving means. Feel free to read them a daily log of your responsibilities. Day in and day out. I myself could never have imagined what it was like until it became a necessity for my special Aunt (who helped raise me). She was a handful because she was still very physically active while having advanced dementia. She passed at 100. My 95 yr old Mom is the same way now.

When my MIL and SFIL started falling apart and I had out-of-state BILs and SBILs to loop into the situation, I decided to send out weekly, then daily email updates so that they could never come back to me and say "I didn't know.... ". I included all types of minutae and how long it took. Not to guilt them but to educate them and also prep them so that when they came to visit they'd be less shocked.

We involved our 3 sons in my in-laws daily care as I saw it as a good education for them. They have a lot more empathy for my Mom now (their Nonna) and will hopefully have a better understanding for when my husband and I start down that path.

For the people who you've explained and still don't get it -- or care -- yes, those are the ones to cut out. May you receive blessings and peace in your heart on your journey with your husband.
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Yes many people will frame you as either a saint or a leech 🙄. I gave up a lot to care for my mother but I never would have began if there were not some sort of mutual benefits, the problems arose after the burden of care had gradually increased to the crisis point (as is so often the case) - the frog in hot water syndrome.
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