How do I explain stress from caregiving to friends?

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.

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

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.'.

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.

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.

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.

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.

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!

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

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.

It's like explaining alternate side of the street parking to a cranberry.

It almost sounds like a "friend" who is just hearing about your situation, and/or maybe she has never "entered into" this type of issue in her own life yet, so she's really is just, ignorant of the experiences a "care giver" has...which you still are, to some degree, even though they do not live with you. You have that mental, and emotional bond with them, and feel responsible for their welfare. Your situation could be her first introduction to it all, so try not to jump out of your skin at her. Consider her ignorance as opportunities for "teaching moments" in her life. She'll have to (more than likely) deal with it to some degree, at some point, and she'll draw from what you had shared. Sometimes, just sharing with this type of person, can even be therapeutic. They learn while you can vent. - Candylee57

I have similar challenges. My 92 year old mom is in assisted living, and I do everything for her. Pay bills, buy groceries, take her to doctor's appointments and church, shopping. I have a brother who lives nearby but he is not interested in caregiving. So I'm on my own. It's a heavy burden. Many of my friends haven't been a caregiver. The truth is, they cannot fully sympathize with me until they have to go through it themselves. I know that's not very comforting, but what I have experienced is a newfound empathy with others who I see taking care of their parents. When my eyes meet theirs, we feel a connection. I smile, they understand. It might help to try to make friends with some people who are either caregivers or who have been in the past. It helps to hear others feel the same way. That's what I enjoy about the Aging Care blog.

Oh, I identify with your stress! I went to see my dad everyday in the nursing home. It is not easy to watch your parents decline. It tears at your heartstrings! I think it is the feeling of being helpless to do anything that really describes our sadness. The one thing we can do is ask God to help them in whatever way they need help, and then we lay our burden in His hands. We don’t bear it by ourselves.

please take care, and we share your burden!

Caregiversister

I so feel your pain! I am in virtually the exact same position the only difference is that my father is in the nursing facility and Mom is at home. To make matters worse, I have a twin brother that, other than coming for a visit now and then, does absolutely nothing to help. But it doesn't stop there.

My parents ran into some financial difficulties a number of years ago. They refinanced the house. So now there is a mortgage. The nursing home is taking all of Dad's SSI money and this does not leave enough to pay the house payments. We went from recieving around $1100 per month down to $135.50 per month. Now, we don't have enough money to buy gas to put in the car.

I truly believe that the money problems alone can exacerbate the stress one hundred fold.

Els1esL: You're welcome.

This is the best site, excellent advice because we are all at a different stage or have different problems plus all the support. You can complain all you want and we’ve got each other’s back. That’s what friends do.... no questions or doubts. I pray for all caregivers/caretakers everyday for wisdom, compassion and strength. Love to each of you...

Everything I was going to say has already been said. It just can’t be explained unless you have been there or done that. I would say this person or anyone else that would be that careless with their words is not a true friend. Even my friends that have not been through what all I have (sitting in a hospital room with my 96 yr old father as I type this) but most have at least lost a parent, would never ever say that! I wouldn’t have them in my life if they did. I don’t need anymore stress! Let’s see how she feels when she needs help with something or someone and she gets no sympathy. Boy, I would hate to be the one she’s left behind in a nursing home for “others” to take care of. Good luck and God Bless

They do not understand. They have not got to that stage in life .
I am sure if they had they would not say it.
i understand , I get it ! it’s hard and your strong !
not everyone will get “it” !
keep in touch that is why there is
thank s web site.
Big hugs

Many people are under the illusion that having a parent in a nursing home means you’re hands off and you’re free as a bird. WRONG. Besides the need to visit your parent “just because”, if you don’t go the staff learns that and in many situations your parent automatically takes a back burner to their care.

If you haven’t walked in these shoes, you just can’t get it.

Your friend doesn't have a dam clue! I had my mom in a nursing home for 3 months for rehab due to a fall but she is of very sound mind. To make it short I almost had a nervous breakdown. Two sisters living in the same town. One about 1 mile from the nursing home. It was pure stress and hell with the running & meetings. At first we all started out with sitting there for 6 hr shifts, then 4, then 3. When mom came home it was another circus. One day 6 times I had to drive into town to her house because of the chaos. So believe me I know your stress but I also know I did my part & I can walk with my head high. She is still with us, still on her own & the stress will continue. Best to you..Blessings

It is a shame of the lack of caring for us as caregivers. It really is a sacrificial job with the only reward is knowing you are doing right by your parents. I learned early in this journey that the thankfulness come from the people you are taking care of and not from siblings or friends. Keep going doing the right thing and in the end you will have the PEACE knowing you did what was right by taking care of your parents. I have a friend who helped me take care of my mother while she was alive while family lied and criticized me, so there was no direct communication with them because I did not need the stress. These are the decisions you have to make while you are being a caregiver. People who do not understand or cause you stress is not what is needed. Empathy and understanding is what is needed as you see and witness your parents age. So I suggest you evaluate those relationships and choose social gatherings from people who can help you and not cause you more stress. You do not need that as a caregiver. This job is stressful enough!! God Bless you for caring!!

She really has No earthly clue does she? I am a caregiver, I understand ☺

Most everyone here is right, imho.
This is a very difficult part of life emotionally, mentally, and spiritually - as ONLY those who have gone through it can attest, appreciate, understand, comprehend, and empathize.
Friends who have been supportive and helpful at other times/events in life may not be able to relate to this situation unless they've gone through it - and often not unless they've gone through your particular situation (how much you are involved and what duties you are doing).
I actually found only 1 person that I knew in my life had gone through something similar to me - I took care of (was the 24/7 nurse) my mother for the last 3 yrs of her life which included bathing, food and drink by hand, changing her diaper and managing her catheter, and moving from hospital bed to wheelchair for change of environment and fresh outdoor air.
The only other people I found that actually related were people in communities such as this online one (and others) who did something similar.

*Know* that there are others who have gone through what you are, and will continue to do so. Bless you for whatever you can do, and try not to become discouraged at the fact it's hard to find others we naturally know that have done the same. At the very least I'd recommend reading stories or posts by people who have done what you have to get that "common human connection" of relatability.

Huge hugs from me. Take good care of yourself in the process - stretching, eating well, supplements if you decide to do so (probiotics have been amazing for me), some exercise (even brisk walks), and connecting/talking with others who can understand/relate.

JT

You know when I abruptly had to leave my home and move in with my mother in another state than mine, I had so many people asking me "Are you crazy?," "Are you sure you can do this?" and other questions. My response was that I will do the caregiving of my mother because she was a sweet mother.❤❤

Oh I get it. My father has been in assisted living near me for SEVEN years and either I or my husband or both of us have seen him nearly every day since. I have an alcoholic brother in another state who has absolutely nothing to do with him or me. So I am Dad's EVERYTHING. He has always been demanding and time consuming, but things have been particularly difficult the last several months. Dad, 92, was hospitalized repeatedly from Aug 8 to Oct. 31. Although he is now stable physically, the mental deterioration is very evident. He is hearing noises that wake him up at night and he can't go back to sleep. He claims the noise is in the heating system (no one else hears them) and wants the facility to replace the heating system! I am getting as many as 15 calls a day from him, and we have moved his furniture, at his command, 18 times trying to get away from the noise! His anxiety level is very high and, after I had several fits with his doctor, he was just placed on an antidepressant. Wed. morning I got a 5 am call that he couldn't breathe and he wanted to go to the emergency room. We did so and, after numerous tests, it was determined it was due to anxiety. We have been to numerous doctors and had all kinds of tests, if he doesn't refuse them, for his ears and brain to figure out what this noise he hears is. It is probably due to his severe hearing loss and the only real help would be hearing aides which he has and refuses to wear. But he insists the noise is real and is furious that nobody cares enough to fix it. To complicate matters, my daughter's husband had an affair and is divorcing her. She and her 2 toddler boys have moved in with us She is totally distraught and I am her support system. I care for her 2 boys while she works. My husband has to stay home and work and watch the boys (not an easy task) when I have to deal with Dad. I also have a son in another state who is seriously mentally ill, with no insurance, who has recently agreed to see a psychiatrist. We are paying $1200 a month for this psychiatrist. So, my life is a total train wreck and certainly not what I expected to be doing at 64 years old. Just last week I was venting to my husband's brother. His response? "Well, you know, he took care of you when you were a child. He's your Dad. God doesn't give you more than you can handle." This from a guy who never had any children and never took care of his parents or his wife's parents! I am still fuming! I need some empathy, not a slap on the wrist! So, Els1el, you are not alone. I would venture to guess that people who act like we are whiners have never ever had to care for an elderly parent. Therefore, they have no right to give advice!

ELS1EL;WELL HELLO!! YOUR FRIEND IS NEVER EVER GOING TO UNDERSTAND....its hard but try not to let those people bother you they probly have NEVER EVER BEEN A CAREGIVER!!

Easy answer. Don't bother to explain to friends. Unless they actually spent a lot of time with your parents, they don't understand and don't really care. I might sound callous, but until friends are in the same situation as you, they don't know what it's like.
Arlene Hutcheon

Two of my closest friends, who are very caring individuals have visited my mom twice since her Alzheimer's became severe enough to where she couldn't function on her own. When she lived with me they each came out and brought lunch and we were able to have pretty decent conversation with her. Once I had to move her into a board and care (because her condition had deteriorated), they visited separately and sat a little stunned I think, while my mom talked incoherently while trying to keep up with the conversation. They have not visited since.

I think it's very difficult for people who have not experienced this encroaching mental deterioration to know how to deal with this and I would agree that only those folks who are walking our same path can truly understand what we go through. I have other friends who have lost their moms to Alzheimer's and their comments and questions are totally different from those whose parents died from physical issues.

I am still in charge of so much of my mom's life, even though I am no longer involved in the physical day to day care, and the weight of watching my mom mentally fade away sometimes feels like a clamp around my heart. When she has a bad day and is angry or agitated, or begs to go home (she has been there almost 2 years) I walk away from the home feeling as though my energy has been totally
depleted. And I still have to function with my life so with time, I have learned to compartmentalize my two lives for my own mental and physical health.

In the book/movie, Still Alice, the protagonist who has early onset, comments that she wishes she had cancer because people would organize fundraisers and rally around her condition, while with a mental issue, people don't want to get too close. Losing oneself so totally is a scary thought and many people don't want to be reminded of the potential for that to happen to them. I don't know the nature of your friends, but perhaps fear is an issue. A support group and activities that put you in touch with other caregivers is probably your best course for true empathy. I organized a team and did a Walk Against Alzheimer's and was surrounded by many, many people who knew exactly how and what I felt because they were feeling it too.

You are not alone.

Shes saying it because she doesn't understand the emotional attachment and she doesn't have to live with it .... If she is any sort of friend ask her to come and see what you have to go through ...maybe then she will change her mind