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!
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.
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.
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
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.
@AlvaDeer, thank you for describing the loneliness-dilemma so perfectly in only three sentences. This matches exactly my 5-year-experience with friends, siblings and random people while I cared for my (now deceased) parents.
@CaringWifeAZ
I really feel for what you're going through. In retrospect I see that most people treated me as if I had a contagious disease while being a caregiver, as if I carried the odor of sickness and looming death with me wherever I went. They did not want (or could not) grasp the reality I was forced to live in, and I was not able to really welcome theirs, though I tried very hard because I did not want to lose all of my former social life. Although I knew it was not meant personally but rather not to face their own fear and weakness it really drove a wedge between us, sometimes lasting until today. They expect me to "be normal" again and "get over it", but it is hard to unsee or unfeel things one has gone through.
Now some of these people are confronted with the problem of caregiving too, and I observe the same mechanisms at play that haunted me back then: the family member who was singled out to be the main caregiver while the other siblings watch from afar gets a lot of criticism, eye-rolling and is sometimes even pathologized behind their back - as a way for the others to keep up a flattering self-image and their own guilty feelings at bay. It is painful to watch, and it does not help to restore my old relationship with these people.
OR - as in your case - the caregiver is idealized as an angelic figure, a super-hero etc., but it is just the other side of the same coin: we are dehumanized in both ways, to make sure that the "normal crowd" can safely distance themselves from unwanted fears, pain and discomfort regarding looming death.
I wish I had some comfort for you, but me too am still trying to find the upside of this experience and integrate it. It definitely made me grow up and granted me an inside into our all mortality, something fervently denied by society nowadays. Maybe I am more "complete" than before, but I am definitely more lonely, too.
Maybe it just takes more time.
Big hugs to you, even though I could not help.
Now that mom has been gone for 9 months I can see that I was equally unhelpful to others who were caregiving in the past, because I had no idea what they were going through.
I have attended my church, where I was very active for 30+ years, exactly once since she died. People asked, where have you been? And at least one asked how is your mom? Even though she and I were on the prayer list for the 7 months she was in hospice, and it was announced and printed in the bulletin that she died. It hurt.
I don’t have any answers. Maybe you will reconnect with people at some point in the future. Maybe not. You will certainly have a clearer picture of who your true friends are when this is over. I have a dear few, who even though they couldn’t help with the hands on caregiving, supported me throughout and helped with the aftermath.
I hope it is some comfort to know that people here DO understand and our hearts go out to you. My prayers are with all caregivers, especially during the difficult holiday season 🙏❤️
Every person has, at some point in their lives, a hardship that has to be endured; often alone without much "understanding" from others in their lives.
No one knows what it's like to have cancer (or another potential life-threatening illness) until go through it themselves.
No one knows what it's like to have anxiety, depression, or some such other mental illness until they go through it themselves.
No one knows what it's like to raise children until they go through it themselves.
No one knows what it's like to have a terrible job (bad working conditions, bad pay, bad boss, bad co-workers, etc.) until they go through it themselves.
No one knows what it's like to have financial burdens until they go through it themselves. And on and on.
We, as caregivers, should not feel like we have "cornered the market" on unsympathetic people in our lives.
My sister once told one of her co-workers "I don't expect you to know what my life is like; but I DO expect you to acknowledge that our lives are very different, and as such have different problems and expectations".
I have always felt that there are people in my life who fit into 2 categories: friends and friendly acquaintances. Both are important to me, for different reasons. Friends also include some (not all) family members: the people who will lift you up when you are down, who will be there, either in person or in spirit when you need them, who will cry with you during your troubled times and laugh with you during your happy times. These people are few and far between, and that's ok. We can't possibly be all things to all people; and for our own sakes, we have to draw the line somewhere in how much of ourselves we give, lest we lose everything that we are. The acquaintances are people in my life that have meaning, but not so much that my life changes significantly around their comings and goings (and I have family members who fit into this category as well).
I try very hard not to expect things from people that I know they are unable to give, be it physical, emotional, supportive, financial, etc. And I try to be very fair and reasonable about my expectations; just because I might be having a hard time, doesn't mean others in my life aren't also having just as hard a time, if not worse, than I am.
Another I feel bad about hopefully it mends it's self some how, but who knows. He was my walking partner, and I like to walk early, he kept pushing are walking time a little later. I was feeling manipulated, and have little patients with being manipulated. Also, being that his wife is one of the alcoholic friends, it's probably best anyways, but I miss are walks. Just not enough to walk at 3 in the afternoon.
Notgodenough, I like what you said. To add to that, we as people are also different, because of that difference we also can't know what someone has gone through. So when someone can't understand what the caregiver is going through, they also haven't lived there life. Walk a mile in my shoes, as the saying goes
Never complain, never explain.
Good thing we have this forum to vent!