I saw this on here and I have been caregiving mom for 9 years. My husband helps a lot too. We get weary. Can't ever just talk to family about how we are feeling. Get a tongue lashing. but none of them ever help. So now we are just pulling away from everyone as , like I said, we are just weary.

Helpful and easy to read - that is for the care partner. I am a care partner since my wife is in assistance in living. Help is often not around. Our kids are not close so that makes it even more challenging. Understanding is not learned or able to be comprehended in just a short eight hour visit from those out of town.

Many people - especially family - and siblings don't know what to say....And most of the time they are worried that the caregiver is about to ask them to do something like actually "visit their mother" once in a while....Trying to avoid the obvious, they tend to say "stupid" things....Often their remarks make the caregiver feel unappreciated. My mother has been gone for 9 months now.....My brother never thanked me once for the things I did for her while he "sat on his hands". As you can tell, I am still experiencing grief for the loss of my other and resentment for the family members who could not find the time to visit her....

I was warned by my friends not to take care of my old friend - etc etc. I was actually shocked when they gave me that advice. Then I thought about it and it reminded me of how they raised their children and how I raised mine. Their children all are adults now and their mothers' still criticize them. It dawned on me that when they were children their mothers' were always there for them. My conclusion they are selfish people. (1)They are not capable of giving of themselves (2) They are always sure they are right - and of course have no capacity to do anything but criticize. Oh, unless they have the money to just give it and not of themselves. I am happy with the person I am and could not be happy any other way.

I put up a sign where I sit saying The only thing a unpaid caregiver wants to hear is thank you, or you can go home and I'll take your place. Sure cut out a lot of the unwanted advice.

I hate when people tell me, what you got to do is.

It is a good article, yet a key piece missing are suggestions of what to do or say instead. Similar to when someone has lost a loved one and we all feel kind of weird simply saying “I’m so sorry for your loss” or similar lines, I’ve read articles that give ideas about what to say instead.
It is hard for people...even other fellow caregivers, on this very website...to realize what to not say or say it differently.
For example, instead of someone telling me I need to get out more, an idea that could work great for me would be to call me and mention for example that they will go to the supermarket this week and wondered if i needed to go too, and that maybe we could go together and then beforehand or afterwards we could get coffee somewhere. But the thing is, it takes HONEST CARE AND TRUE DESIRE TO HELP YOU GET OUT AND TAKE A BREAK. It takes for someone to really want to help, for someone to really getting that as a caregiver you’ll likely decline an invitation to the movies or to a get-together because you simply don’t have time and have too much to worry about..but if you present it as an action not a suggestion or idea, and one that actually considers that we can do something we need to do anyway like grocery shopping, and also add something nice and fun like stopping for coffee... caregivers can do that, and will likely welcome it!!
To be a friend of a caregiver is different..and a true friend knows it. Help is in the actions, not random silly comments that well intended or not accomplish absolutely nothing.

May this Christmas be a truly blessed one for all caregivers and loved ones being cared for, may we all find a solace of peace in our daily routine and may others find in their heart the appropriate ways to be a loving part of our day to day life.
May God bless us all!!

A Caregiver cannot hold him or herself responsible for the outcome of their loved one, one can only do their best and in my case the medical system was responsible for the death of my brother they had medical error and that is not my fault and I did much for my relative before he ever went to the hospital so I don't hold myself responsible for every thing that occurred.

Hi all. Coming up for air and joining your group. In my 3rd year with two moves and 3 hospitals later. One day at a time -- it is the only way. Moved away from son as husband has focused his frustration angry depression squarely on him and at him. It used to be me. I just won't buy into his outbursts anymore so he had to look for another to spew his degrading remarks too. Sad because husband really really does love son and so proud of him yet when he sees him it is all downhill. Only child and as a Mom tears me apart. Tears son apart too but he has a family to make his priority. He has a special needs son (our grandson) and a fabulous loving wife.
Being 6 hrs away gives them room to breathe and be a family. We have friends here but they knew the old guy not the new guy w the stroke and aphasia who has trouble w conversions and has become soooo opinionated and depressed. I have a great Couselor helping me focus and understand. Doesn't make it easier but makes me feel not alone. Friends really don't understand. Haven't had to face this yet.
All the things y'all are discussing is right on. I take the affection and sweet words when they come as a bright star but they are rare. Feel isolated from him in our home because most discussions end in name calling...so I exit to another part of house. This is the hard part too. God bless y'all.

Thank you Cheryl... Looks like it is this thread that is somehow corrupted (?). It's so good to hear from you and nice that you care... You are so considerate and kind. I hope you're able to relax and breathe better. I'm trying... (hope we can somehow get this tech issue fixed to where we can private message soon, etc.). 🙏

Heart2Heart...just wanted you to know that your profile still does not show up on this question but does on others. My profile is still wrong here also. Had a long day and was at Sloan today with my husband. I can get to your profile by going to mine. Will write to you soon. Hope you are okay.

Well said John... Many of us worked extremely long and hard to finally get to a point (while we were physically and mentally in good shape) to enjoy our 'retirement'... To me 'retirement' meant we could finally reap our rewards and get some happiness out of life by our 'freedom' to explore (whatever we wanted to). I guess this is why there are so few caregivers and why so many family members run as fast as they can... to avoid helping or 'ruining' their lives.

Don't ask, "How do you like retirement?" I never envisioned my life turning out like this.

Thanks again Heart2Heart, posted on your wall. Saw your post and connected to your Wall . Let me know if you got it. Good Night!

Ok Cheryl... (What a mess on AC)... I hope you're ok as well... If I get an more information from AC Tech Support, etc... regarding our issues I'll write here... ugh!

Okay Heart2Heart thanks for letting me know. I am sure that we are not the only ones. Hope you are okay and will keep in touch. Thanks loads!! My name is Cheryl but it does not go to my profile when you click on me above. It goes to another Cheryl....Will keep in touch

PS My 'About Me' box has disappeared also on my profile. (This has happened once before... since they've been working in this site in the past year)

126Cher... I'm glad you responded here, because I attached your message, along with my issues to tech support. Maybe somehow this will help them fix this big problem... I'm as frustrated as you... just what we don't need for sure... We'll see what happens... keep in touch here... (I can't even remember what we were discussing and where we left off... hmmm...). Will try and be in touch when they fix this... I hope...

I got your last message on this page. Thank you Heart2Heart but nothing from on my profile which is also messed up. I do not have a father named Ben. When you click on my profile on this page it goes to another person named Cheryl who is not me. I am have also written to AC support about that issue but have not heard back yet. Hate to think that people are sending me messages that I am not answering because I am not getting them and they are going to someone's else s profile. Not good at all!!!

126Cher... Not sure why my profile is messed up ... I have contacted the AC Support.... Did you get my last message I sent you today?

Heart2Heart tried to send you a private message but when I click on your profile it says it was removed. Do you know about that.

You're welcome 126Cher... I know it's all so difficult... So many things complicate life... I'm sorry you husband is also not well and I wish the very best for all of you. Maybe, your daughter is also scared (without even knowing it) and, can't handle it... maybe, it hurts her... who knows... Imknow my youngest brother (who was 7 when our father passed), never wants to get involved with anything with my mother's caregiving... He just turned 54.... (I don't think he wants to get too close to anyone, except his wife... they have chosen to not have a family). Don't forget you though... Take care of yourself and give yourself breaks... Blessings...

Thank you Heart2Heart! I understand what you are saying. I will let it go because she already knows that I was up-set. Guess I expected a little more from someone her age. Also knowing that my husband/her DAD is also sick. Thanks for the answer. I will not press it.

126cher... I believe it's because of your daughter's age... Some mature older than others. I think (like all of us) we learn as we grow older (about life... hopefully). And, then... everyone has different personalities, etc... Perhaps, she'll realize this one day... I wouldn't press her though... just my two cents...

For me the comment of at least you don't have to go to work everyday. As if caregiving isn't work

Number 9 set me off with my own 29 year old daughter who told me she did not want to hear about her 92 year old Grand-Mother because she did not want to speak of anything unpleasant. My Mom was always there for her and now in a dementia unit. I could not believe she said that and was so hurt by her reaction!

Maybe I don't understand this (and that's probably because I never did it, and also because I am very good at putting my foot in my mouth), but it seems to me that many of these comments seem to come from a good place ( I know... sometimes good intentions can be the worst) and that people say these things because they care about the caregiver.
The first time I took Mom out of the nursing home to have lunch with my in-laws, she went straight to my MIL and said "my kids put me in prison!" (I was not part of the conversation, but I was in the room). My MIL basically replied: "Oh, I know, they really do not take good care of people in nursing homes, do they? When I visited my mother's friends there, they usually did not make it past a couple of weeks".
Well, Mom passed away a couple of weeks ago, and I agree that she might well have lived longer if she had had in-home care, so I guess I should not care... but I do.

A response to the article; I've heard all of these 11 things said, and more than once, I found one response that works every time. Simply say; I didn't know you had caregiving experience? That shuts them up immediately, tongue tied, at worst you maybe hear a oh, my mom was in a nursing facility for five years and I'd go and visit her on Sunday.

If you have never been a caregiver it does not give you any right at all to tell me what I should do or how I should feel. I was amazed to find out that a 'counselor' for caregivers had never even been a caregiver! Until you have been in this place, no one else has the right to tell you that you are too controlling, or that a decision that you had to make was not correct.

I think that Carmen P said it very well. Even when we do "get away for a day", we don't really enjoy ourselves because our parent or partner or person is always on our minds. I have learned to take a day off from visiting every other day. On my "off days" I try to do some things for myself like cook, clean, do errands or maybe go to a movie. There really is no one to talk to about this because only other caregivers really understand the toll it takes on the life of the caregiver. When I visit my mother I do not leave her until she falls asleep because I don't want her to feel alone or like I just left her. Caregiving interfères with everything else you do in your life - both short term and long term plans. Although you are an adult, your life is not your own. An old friend once told me to "just put it out of your mind". That was the last time I spoke to her. I don't think that people intend to be mean or insensitive. They simply do not understand the situation of the caregiver. My mother has a son and 3 grand children. None of them bother to visit because "it makes them uncomfortable". For the most part I think that caregivers learn to bear a lot. After dozens of visits to hospitals, and hundreds of hours of keeping company at the nursing home, we become desensitized to the things that used to bring tears and anguish. And we learn how to not react to some of the awful things that people who mean well say to us.