How do I explain stress from caregiving to friends?

My dad is in memory care with advanced dementia. He poops on himself, in his bed, on his furniture, every day and sometimes smears it around. He is skinny as a rail and is limited in his ability to communicate. He has to be showered, fed, wears a diaper. He's been there for 2 years and I am the party to handle all of the logistics and to receive the phone calls that there has been a fall, he needs supplies, he's in the hospital, or some type of decision about his well being needs to be made. Most people just tell me "well, you are lucky to still have him" like it's just a normal aging parent situation.

We as caregivers have pretty much surrendered our lives to the people we care for. Not too many care or help. I think we have to accept this and think about it. We are giving so much . I hope it’s worh it

In the particular case that you are describing I’d say that the person you were talking to has a great difficulty with empathy.

I haven’t read the other answers yet, but I’m sure you have heard-and experienced- that our life as caregivers tends to be very lonely, and that is because people either,
1- Don’t understand -as in don’t have a clue- about what our life is. Or,
2- They pretend not to understand, because understanding may imply actually being expected to help. Or,
3- They really, truly don’t care.

But like I said, in this particular case and specially because she seems to be aware of the situation (Alzheimer’s, etc), she is lacking the empathy factor...and I have to wonder, completely lacking empathy can someone actually be a good friend to you?

Think about that a little. If there is a benefit caregiving brings with it is that it helps us see things, people and situations and value them for what or who they really are and their significance, including “friends”. I’m not saying anything against her, maybe she is a good friend to you in other situations, but it is very hard for me to understand how someone can not have the intellectual and emotional intelligence to realize why you were/are stressed out, when the reasons are obvious, at least should be for a friend.

As to your general question of how do you get people to understand your life, specially as a caregiver, I would say you don’t. There will be some people that love you and care about you and will naturally be able to empathize with what you go through, but those sadly will be a minority. Most people fall under one of the three buckets I mentioned, until one day it is them who happen to become caregivers, and even then, some will never get it.

Keep your expectations low, and try to surround yourself with those few that not only can, but want to understand and even help along the way.

A hug to you, and be sure that here we ALL understand you!

The friends that speak like you say are NOT true friends. It is best not to get involved with these unkind thinking people as much as possible. Real friends are concerned about how we as care people are feeling and help if possible with kind words and deeds. I have found it helpful to go to a Carers meeting and meet others in similar situation. It is mentally very stressfull visiting a relative with the illness you mention as they change from visit to visit. Its like a bereavement that has not actually occured.. I think no one can really understand unless they unfortunately have to go through it themselves.

Op I am sorry you are going through this. I have come to believe that unless this touches someone personally, they. Don't. Get. It.

Most likely it will if their parents, direct relatives are still living. I know this sounds awful, I do. I have come to envy my contemporaries who are orphans. Whose parents are deceased and never experienced any of this.

Those who say you are so lucky to,have x or y still with you.

Am I now? You want to scream at them, come spend a week in my shoes.

In the meantime, you have this fabulous group of people. Who will listen, offer constructive advice, and know well, very well, from whence you come.

This board IS the port in the storm.

They just don't get it because they have not yet to carry the candle that sees the light in these situations. I totally understand how you feel.

I am not sure I agree that people really don't care. I would give them the benefit of the doubt and say they truly do not, and cannot understand. They are fortunate in that this whole experience is as foreign to them as walking on the moon. One poster here said it well, it's like trying to explain parallel parking to a cranberry.

You would not resent a blind person for not appreciating the Mona Lisa or the Sistine Chapel. You would not blame a deaf person for ignoring the Boston Pops playing Mozart. Trying to explain your concern for your parents to this person and then being angry because they don't get it is an exercise in futility. This person can still be a friend, if you want them to be, and if they have other qualities you value. But you may have to accept the fact that if you want to visit the Sistine Chapel, you need to choose a companion that can actually see it.

Welp. I'll just say it. I may have been one of those people. My cousin took care of my Mom's twin sister for years. She made it seem so easy. So, no, I didn't get it. I thought I was understanding, etc. But, until this happened with my Mom? I realized how clueless I was. This is a difficult struggle. Doesn't always mean people don't care. But maybe they just don't really realize what this involves. No, not maybe. They just don't get it like we do. But, doesn't mean they don't care. Just they don't understand. Doesn't make them bad people, just, well, again, dont' get it.'.

The very same thing was said to me a few years ago when my wife was in the nursing home for along time..I was very annoyed at the time...Now I truly believe such folks don't have a clue about how enervating it is to have a loved one in the nursing home...There is no easy answer...Gratefully there were few folks who were so uniformed that they asked such dumb questions.

Take deep breaths and count to ten, maybe....

Grace + peace,

Bob

Oh gosh, you CAN'T. You just can't. Even people who are fairly close to you, even people as close as a fiance! Unless they live it, spend a DAY doing it, they just can't, don't, and won't "get" it. Even the most well-meaning people can be really clueless about what you're going through, try not to take their "cluelessness" personally. I am still learning how to blow off insensitive comments and the boatloads of unsolicited (and often laughably wrong) advice that usually accompany any kind of conversation you try to have about what you're going through. I've learned which people are good sounding boards, and which are not; which are going to get annoyed with you for what they perceive as your not following their wrong, unsolicited advice. I have 'someone' very close to me that never had the pleasure of dealing with dementia himself, that has this charming habit of also criticizing the way I "handle" situations with my dad ("Don't say that. Don't do this, Don't "whatever"). And then he will proceed to do or say to Dad the EXACT thing that he just criticized me for. Yeah. That's fun.

You will find no better support than the good folks here that are living this right along with you. I don't know what I would've done without this lifeline. Even before I made a couple of posts here, just reading about all these things I've come up against, and how others have handled it, (and just knowing you all are there) has helped me so much. I don't feel so isolated, and I know beyond the shadow of a doubt that SOMEONE gets it, even if it's not the people in my immediate contact that I wish did get it.

So vent away here, we get it, we're giving you hugs.