Why do people seldom ask the caregiver "how are you doing?"

There is a long running thread on this site. You may find additional support. Search for it "the caregiver how are you doing today?"

From what I’ve learned this is a road where sadly one travels alone. I include family in that assessment. No one wants to touch the subject not even with a ten foot pole. Only other caregivers who struggle daily with the sometimes insurmountable task of taking care of a seriously sick individual, know how valuable is the work of a caregiver that works mostly alone. No sympathy, no empathy. Trust me when I say you are not alone, but your job is so vital words can not do it honor. Have a lot of tolerance, God BlessYou every step of the way, and remember the old axiom: no one cares when you’re down and out, excepting those that truly love you.

I'm never asked how I'm doing and just because I moved in with my mom 11 months ago my siblings feel like they don't have to visit her anymore because I'm here 24/7. So hurt by this situation. I left my children and grandchildren to move across the country 5000km away to be with my mom. I feel so abandoned and responsible and depressed and angry. Emotional roller-coaster to say the least.

Imho, picture, if you will, the more updated television advertisements of the modern physician performing a virtual telehealth visit with his or her patient. The physicians seem much more focused on humankind, e.g. after assessing the clinical diagnostic test with their patient, they will then ask 'How are YOU doing?" I believe the same may apply to the caregiver. Whether the caregiver gets a nod for the job may depend on the individual asking the question.

Why would you think it sounds selfish? Your just as important as your mom - being a caregiver doesn’t devalue your innate humanity - your 100% just as important and frankly people who routinely only inquire about her are either lacking in social awareness or may be doing it intentionally to be snarky ( in some small percent of folks)

a great reply is “we are BOTH doing pretty good thanks for asking”
it makes the correction without it being awkward.

I am so sorry that folks aren't more thoughtful. According to all I am reading, and I am new to this, most folks don't have a clue!! I am blessed that I myself have not had this often. I wonder if the unknowingly thoughtless folks are your family and friends. I think perhaps not. Be sure to turn to your family and friends for hugs, virtual and otherwise! I support you and your efforts!!

Guilt and they do not want to hear the truth.

I suspect a lot of people assume that if one is alive and walking, then that person must be fine so they don't ask. They also don't realize that caregiving is both time-consuming and stressful, so no toll is being taken on the caregiver who appears healthy and happy on the outside.

You are so right!! I validate you. There is so much power in that question. It’s not that you want pats on the back. You need to know others care about you too!! I hope you have a friend who you can talk with. God Bless you on your journey!

I've taken care of my mother both physically and financially for over 30 years now. She is currently 88 and as healthy can be, except her rheumatoid arthritis has pretty much crippled her and she can barely walk (many falls, fractured hip, etc.). I am also nursing my 63 year old husband through stage IV lung cancer (he never smoked) AND I nursed my first husband through liver cancer. Through all of this, everyone has been very concerned about my husbands and my mother, but little to no thought of me. I'm 58 years old and retired two years ago from a stressful corporate position, but since my husband was diagnosed four months after I retired, I've had no opportunity to live the retirement "dream" as I had imagined. I've gone from having a big salary and a large staff to a full-time housekeeper, cook, medical assistant and psychologist. I've come to believe that people don't really want to know how hard it is on me because no one really wants to step in and help. The rampant coronavirus has made it even easier for people to opt-out, so now I have ZERO free time. People are telling me how bored they've been with the lockdowns and how many books they've read, etc., and I just want to scream! Being a caregiver is a difficult and thankless task. I have often thought that the physical, financial and emotion stress of it all will send me to an early grave. I bought premium long term care insurance when I was 45 so my daughter would never have to be in this position with me. So, those of us in this racket know how you're doing and know how you're feeling, but many would rather not get involved. I guess the support from this community of caregivers is going to have to be enough, but please know that I feel your pain. There is a high place in heaven for you.

It's not selfish. I feel the exact same way - especially since I'm the only person my wife doesn't know and I'm her caregiver for her Parkinson's disease and her Capgras syndrome. Her dementia doesn't effect anyone but me so it's not always apparent that she has dementia and it almost always appears to our kids that she is doing OK with the physical symptoms of Parkinson's, because it seems like they aren't that bad when they're around. Meanwhile, I'm taking care of her 24/7 when all the while she's constantly saying and doing things that make me feel like a stranger in my own home. It sucks! I wish that just once someone would ask me how I'm doing!

Becoming a caregiver is a choice one makes of their own volition.

Perhaps, people assume that you are happy to be a caregiver.

If you appear healthy, and functional, there is no reason to ask after your health and emotional well being.

HeShe, the most important thing I've learned is: stop apologizing! And stop apologizing for being selfish (you're not!) and acknowledge how hurtful and difficult our journeys are.

For 5 years, neither of my two sisters ever asked me how (our) mom was doing, much less how I was doing. I'd moved in with my mom when I was first divorced (after 30 years), to give myself time to get my bearings...which turned into a 5 year full-time caregiving routine. Both sibs just thought I was there for my own convenience, and was 'getting a free ride' (housing wise). When I'd mention mom's mental and physical decline, they'd same the same thing ("she sounds fine"; "she's doing great!"--based on their 1-2 yearly visits.) Five years in, I eventually did (choose to] melt down after 7/24 solo. Really only due to not having ANY support, physically or emotionally. I/we are all really and impressingly strong, but we are humans with hearts, and we are NOT WEAK OR SELFISH!

2 years ago I gave 2 months notice to them both, left (1800 miles away) and made it a 'peaceful' [fake] transmission of caretaking to the two of them (and effectively severing any pretense of us being 'family'). I've come to accept and understand that it was a reflection of them and their own lack of inner resources, and not them being actively uncaring about me.

I thank everyone on this forum and a wonderful therapist for helping me as I have travelled this path, and continue with both to help me understand my experience, and not allow any guilt or PTSD to creep in.

P.s., mom continues to be o.k., in her own home, as she wishes, She's pretty much completely dependent on others. Now, that, to me, really IS selfish; I'm grateful for that lesson; I've made ALL legal and financial arrangements, and I am at peace with all. Bless you, HerShe; I'm grateful for you for being here!

You have hired the person to care for your Mom. Her focus is on Her Not You. A caregiver will recognise how you are doing by looking at your face. You must be doing well. A caregiver can be paid extra time to sit and have a chat with you.

Llisten! Every day , people, ask me " how is your gran ?"
What can I say to that ? " Oblivious " ? " Sundowning like a pro " ? " Hallucinating people all night " ? That would be the truth but the truth is also" She is mostly happy and fine and aside from the dementia in good health " so that makes me pretty ok too. I just wish someone would ask me how I am once in a while.
Unless they've experienced it , people fail to get how caregiving can really take a toll. The only people who have ever asked " How are you ?" Were , without fail , past caregivers . So , I get you . I get you big time.

It is hurtful and selfish but people are glad they are NOT the caretaker and either don't want to know or see and are afraid of hearing the truth. So they steer clear. Someone else is doing the dirty work. I can't think of a more difficult, thankless job than to take care of needy seniors with dementia.

My own brother doesn't ask me or thank me. I've done everything for my parents since I live a few blocks away, shopping-cleaning-laundry-doctor appts, hospital runs. Whenever I would mention my mom's mental decline he would say things like, "I speak to her on the phone and she's sounds fine"-Even when he visits he denies she's as bad as she is. I finally realized from observing him that he has no idea what it takes to run another household and to care for a person who has any disabilities. He's never done any of those tasks, his wife does it all, nor has he ever cared for a sick person. He evaluates my Mom based on conversations he has with her, rather than observation.
My closest friends do ask me how I am, as does my husband, and that is enough for me. Most others just know I take care of my Mom because she is the one who needs help - so they ask how she is. I don't ever take it personal.
What I'm trying to say it's not that others don't care - it's just that they don't realize the toll it takes. This forum has helped me so much for that very reason. Its so comforting to know we are all in the same boat.

Most of the time it is a simple matter of not knowing what to say. I think that the assumption is that the caregiver is "not doing well" and likely overwhelmed by so many things. I think the assumption might be "Why bring this up now when perhaps it is the single moment in the day when they aren't having to think about it". Just occasionally you will get the good soul who will say "How is your Mom (Dad, brother) doing? It has to be so hard. If there is every something I can do for you, deliver some groceries, come over to sit in an emergency, I hope you will ring me".
There honestly is little to say about it. But it would be good just to have it acknowledged, and as I said, I think folks just are at a loss for what to say.

I can totally relate to this! Concerned friends and family were always asking me how my mom was doing. She lived with me for the past 3 years and trust me it was exhausting. The last year I believe she was starting to suffer dementia and was becoming more and more difficult. I was totally burned out! A few would say - and how are YOU doing? Which I appreciated. Many I could tell did not want to hear the dark tales I had to tell - so I kept a lot of the verbal and emotional abuse to myself. She suffered a stroke this year and is still with us but with Covid it has been quite the journey. She's been moved 3 times and is now in a nursing home and has to be in "locked down" unit because she keeps trying to leave and she has also become somewhat agitated and abusive to the staff. As I told my brother...welcome to my world. Only one or two friends really know what I endured. At this point I'm taking care of myself because I cannot no longer do that much for her. Self-care is my motto for 2021 as my body, mind and emotional health have suffered greatly. Get some help - some assistance, therapy or at least practice self-care. WE DESERVE IT! Peace to you.

This won’t be an answer in as much it will be vent session! I hear you and it doesn’t sound selfish. I get asked this question all the time even though many people know that my mother was abusive and I have no contact. It’s really really hard for me to not answer with something snarky like “she’s not dead yet.” Ugh it’s painful for me to go to these dark thoughts. I have answered with she’s getting good care and is safe.

I was recently asked this once again by a old friend that KNOWS how stressful this has been for me and how abusive my my mother was. When she asked “Hey how’s your mom doing I answered something like this: “as you know I don’t have contact with her because it’s upsetting for me to see her. But her staff reports her symptoms are under control. Everything is status quo and if something changes I will touch base with you because I know you care about me. If you don’t mind I prefer not to talk about my mother and let’s just talk about more positive things.” I will give brief updates on Covid and her facility as well as her hospice status. But I have learned to politely redirect the conversation.

I know you are are asking about more about friends and family being concerned about you and your well-being. I have approached this directly with the askers. Like “gee my moms condition is (fill in the blank). Thanks for asking. If you don’t mind I could really use an ear to talk about my stress right now?” That’s is if the relationship warrants that. For my good friends I will call and just vent to them. I also went to counseling (via Zoom!) so I would have that time to talk about myself.

So, how are YOU doing!

Here are some possibilities:
They do not realize how exhausting it is.
They do not understand the sacrifices involved.
They do not know the cost...financially, physically, emotionally, and/or socially to the caregiver.
They take the caregiver for granted.
They do not want to know because they do not want to help.
They feel guilty.
If you are feeling overwhelmed and taken advantage of...PLEASE get some help. If placing your loved one into a senior facility is not an option....look into respite care, hiring someone to come in part-time to help and/or give you some time to yourself. Insist that your sibs help. Take care of yourself FIRST.

Maybe some don't want to get the answer because that would mean they know you need a break - and they may have to deal with the answer. Maybe some just don't know what else to say. If you are even getting a call or a visit, you just take what you can get. You're there because mom needs help, so that's what comes to mind to those not in the middle of the mess - how is mom doing.

Maybe because I was a caregiver my conversation typically goes like this.
"Hi, Sue, how's your mom doing?" I wait for a response then I say ..."OK, and how are YOU doing?" Then I just listen.
I think that people that have not been caregivers do not realize how draining it can be, even if you have help. There are nights that you are up 3, 4 or more times. Even if you have someone caring for your loved one so you can get out there is always the fear the phone will ring with some emergency, you have to rush to get back because the caregiver has to leave by 3:00, you are wondering if the medication that was ordered will get there before the storm hits, will the delivery of briefs, gloves and wipes come before you run out....as well as how you are going to find time to make a doctor appointment for yourself, how you can....and it goes on.
I think people think it is more "caring" to ask about the one that is being cared for. "We" typically don't talk about ourselves and do not want to seem like we are complaining.

I know what you mean.  I am not a "full time" caregiver of my mother (per say of bathing toiletry stuff), she can still move around, etc, but I have to make her meals, get her groceries, etc., which can be exhausting sometimes especially when my brother doesn't offer to help. And I don't bother asking because it seems like its too much of a hassle (he lives 1/2 hour away) but he don't drive when it rains, blah blah blah.  And some days I wish someone would say "how are you handling stuff"........I didn't even get asked that question when my father died, it was always "how is your mother?", but I don't know if fully grieved because worried about "mom" and how she was doing (even though dad was in NH for 6 years with dementia).  It still hurts that no one things about asking the daughter how she feels.  So...........I hope you are doing okay and take some deep breaths or cry to let out your frustration.  wishing you luck.

Caretakers are often taken for granted while people's attention is focused on the person who is in need of care.

You came to the right place to ask for some acknowledgement. Your fellow caretakers understand.

We are all curious about your age and health. Are you able to find any time during the day to read or sew or enjoy some activity of your own? One of my own "de-stressers," is to work jigsaw puzzles. You might try an online exercise video. You can search for a level that suits your needs and abilities like "chair aerobics."

Keep using resources like this forum to talk about how you are feeling. It helps enormously to be heard.



You must have internet capability since you have found this forum.

Maybe you would enjoy an exercise video

I’ve always known the care giver is an afterthought, at best. A big reason why I always try to ask the care giver how they are dealing with their situation. Their response is usually sad and tearful.
That is why this site is helpful.
I’m dealing with a husband, 70 years old, with Parkinson’s for 15 years, and dementia for about half that time.

I'm happy to say that when my mom had Alzheimer's and moved in with my husband and me, a friend of hers would call and check to see how she was doing, but after a while, it was clear that she was checking to see how I was doing as well. About a year or so after my mom's diagnosis, her husband was diagnosed with Alzheimer's, and I too, would call to check on her as well as her husband. Even though both her husband and my mom have since passed away, we still keep up with each other and check on each other. I even wrote a book about Hubby and I taking care of my mom called, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale."
I think if you're not involved with caretaking, you probably don't think of the responsibilities and stress of that role. I don't think it's a deliberate sleight, I think many people just aren't aware of it.

#1
They might not know you are the Full Time Caregiver.

#2
They have never experienced being a Caregiver and have no idea the physical and mental of it.

All these people who ask about your mom, you should just say, your mom would love it if they could come and visit fir a few hours and add that it would be wonderful fir you as well, so you can have some much needed you time.

They don’t care!

It all depends on YOUR support system. My husband is 58 with Advanced Stage Alzheimer's. We own a bar and our bar "family" are the best support. I get messages daily to see how WE are, not just him. For a little while there I wasn't hearing from anyone and I started feeling alone like no one cared how either of us were. Of course everyone was dealing with the Covid crap and the rest of the screwed up world but now I understand. I'm sure they mean well but definitely do not have a clue what we go thru being the primary care giver. I hope you are doing well, just think positive, that's all I do!