Why do people have no compassion for caregiving?

Years ago I worked with someone who was returning to her career after a 2-year absence when she moved to another state to take care of her mentally ill sister. I definitely didn't criticize her but I wasn't quite sure I understood her, either. I saw that it was a struggle for her to fit back into the work place.

Fast forward a bunch of years. My husband developed dementia. I stayed home to care for him the first year, worked from home after that, and again stopped working when he went into hospice care.

I realize now that if you haven't been through it, (or at least seen someone go through it up close and personal) you really can't comprehend what caregiving an adult is like. Your co-workers are probably not mean-spirited or lacking in compassion. They are just ignorant. Some of them someday may face decisions you had to make, and they may decide in ways they don't anticipate now.

I don't think that the career sacrifice is a price too few will make. This forum is ample evidence that huge numbers of people do make this sacrifice everyday. You don't happen to work with them right now.

You made a decision. You are satisfied with it. You would make the same decision again. Don't let it bother you if others don't understand it. You don't need words for these people. You certainly don't need to justify yourself. You might say something like "Yes, it really is hard to understand until you are faced with the situation."

Hi Mmendez,
Personally ,I think, people who criticize other people's choices -especially about something so personal, do it out of their own guilty conscious. Perhaps your co -workers feel guilty because they could not make the same level of dedication as you did and it weighs on them and , unfortunately, they try and make it seem like it was a "dumb" choice to make themselves feel better. Maybe next time someone says something like that just remind them that you are happy with your decision and don't regret it at all though you know not everyone would do the same. Good luck.

I have given this question a lot of thought over the past few months, especially as I find myself in a position where I am increasingly more and more invisible with everyone around me.
Nobody wants to know how we are because to ask us if we are doing ok demands that they actually listen to the answer which is NO, I am DROWNING, I need your HELP. They don't want to help, convince themselves that what they do is enough, and cannot ask if you need help, because what if, God forbid, you actually say Oh Yes Please.
It is easier to not see us, ignore us, negate us, devalue us, because then they don't have to feel guilty for NOT doing it in their own situations. Its denial ... of themselves, of the situation, of us.
Everyone's focus is on the "poor old man" but nobody has ever asked me if I am doing ok with it all. It has gotten very close to me packing my bags and leaving, and then of course, everyone will then say how awful and terrible I am to walk out and leave them to have to make new arrangements.... which at that point will be putting him in AL, because nobody else will take him into their home.
Its guilt. Its denial. And its "Oh thank God somebody else is doing it so I don't have to".

There are people who have and show compassion for caregiving. In your case, it is absent from coworkers.. You will find support in your place of worship and from friends who know of your dedication.

You are a beautiful person and I am doing the same thing, it has been 6 years now that my mom has lived with me I am now 53, she has dementia along with many other diseases and I take care of her 24 hours a day, my husband has asked for a divorce so now I am going to go through that also, I feel exactly like you do, My mom comes first and I will take care of her till she is called home to be with God. I made sure in our legal agreement that mom and I stay in the house until she went to a skilled nursing facility or passed on, he was so sure that she would qualify for skilled nursing that he agreed well they turned her down and said she qualified for assisted living but does not make enough to pay for that and I don't have anything, I have major depression and high axiety, so all I can do is care for her, now even though we will be getting a divorce, he has to pay the mortage upkeep and utilies on ths home we will be living in, what goes around comes around, I have siblings but no one helps, it all falls on me, but that is ok, I know in my heart I am doing the right thing, and in the end we will be rewarded in Heaven. Like you I think to many people are wrapped up in their own lives and don't care about others, it is so sad to see that this is what our world has come to, just know you are not alone, and reading yours makes me feel good and I know I am not alone, if you would like to write or talk to me my email is ejbunicorn at aol.com, will keep you and your mom in my prayers, May God bless you and keep you always, emma

My suggestion is to stop worrying about what others think. You're back at work now and all you owe your boss is 8 fruitful hours on the job. He may not understand what caregiving entails or even care about it, and that's his right. Just be careful that you aren't preoccupied with other things or talking about it so much you aren't doing the work.
You chose to care for your parents and you feel you did what was best. Others may not choose the same path for themselves. Every situation is unique and therefore not open for judgement from others...opinions yes, judging never. Life is full of the "judges" and the "judgees". If you feel you are being judged at work then don't talk about your private life. If you don't want to hear the opinions of others then don't share the information. Talk about the weather but don't share things that others could pick apart. It's rude of them, yes, but you can't expect them to feel the way you do. Besides, these are your precious parents you're talking about and your co-workers don't and can't feel the same about them as you do. Your parents appreciate you and that's all that matters.
One of the best rewards, for me, as I age is my ability to care very little what others think. It has been a freedom I enjoy. I live my life, I let others live theirs. My mistakes and my choices are mine. I try never to judge because I've been judged unmercifully over time and it doesn't feel good. Ive finally learned what to share and with whom (big lesson learned). I can't please everyone and I don't expect others to please me. I guess I finally became that duck my old boss told me about, you know, the one that let's it roll off its back.

I think it's cultural, that the American culture puts so much emphasis on personal getting ahead, which is the job that makes sense for young people to do, build a work reputation, economic base for their future and their families. But we live in a fragmented society, divided not just by distance but even in recreation as we all watch TV, internet etc. So we don't SEE and Listen to each other. I disagree that you get compassion in church - other than for a minute or so. Others who have been caregivers know how what's involved, the frequent changes. Not just the time involved, but the struggles, risks, fears and even the successes that make us feel it's very worthwhile. Those who have not done it, are culturally influenced to think life fragility and emotions will drag them down and be endless. Males in the workplace have seen their job to be in a different - and seperate - sphere, and when women fought for the right to join them, they did not fight for more knowledge and shared effort in caregiving at the same time. A huge issue for me, is that the same words do not mean the same thing to different people: my older brother sees care for our disabled brother primarily as a financial issue, and he focuses on that part - but as caregiver, I focus on what works, what helps him sustain himself, what motivates him - and I keep finances in mind, but I feel care and life quality should lead, while financial plans should FOLLOW close behind care needs. Both sides need to explain their realities better to each other.

Don't waste your energy on negative responses. You did what you had to do and what was right for you to do; furthermore, your company gave you a leave of absence to do what you needed to do, and frankly if it is okay with them it should be okay with you. You are adept at taking care of business and taking care of the reality of caregiving, use your skill in seeing things for what they are and not how you wish they were and remember it is just a job. Do your job, that is what you are there for, not to make friends or even make nice, just do your job and be professional and pleasant. When people ask impertinent questions I have found responding with "why do you ask." usually shuts them right up. You owe no one an explanation, find your emotional support outside of your work place and do not explain yourself to anyone. I have found a great truism in that what goes around comes around. Judge not lest ye be judged, and haven't you found in your own life this to be true? Take care of yourself first, your five kids, husband, and your mom. Remember stupid is as stupid does, do not waste your time, and emotion on things that don't matter, use your energy and emotions on what matters most to you.

I think the reason people give you a hard time is probaBly becasue it's not a HAPPY reason you took time off. Socieity frowns on "sad" things - regardless of the reason. I know - my beloved Daddy died a little over 3 yrs ago at age 94 & most people want me to "get over it'. Well, guess what I CAN:T!!!!!!!!!!!!What, just forget about him & move on??????????????????Also, I feel guilty mom's in a nursing home, she's 94 & probably has old-age senility - very lucid & able to understand everything - VERY hard of hearing though. But I DO feeel very guilty that we didn't move into her house after dad died to takae care of her! I know we couldn't since I have a VERY (& I mean very) low frustration limit & hubby Richard is VERY set in his ways - he's much more laid back than me, but I knew it wouldn't work! To that end, she is better off in the nursing home. They do take excellent care of her whereas I wouldn't have been able to.

But I have a question: Is your Dad still on Hospice & are getting help in the home for your mom? Or did your Dad & Mom pass?

Debralee asked the opposite question so it has beeen addressed this past week. She does NOT wantt to take care of her mother - that was it - I had forgotten what her question was.

I am sorry:( I have this problem with some of my own family.They just don't get it.Some are scared of the situation and uncomfortable with it.You are doing a hard job...you need support.

Because they think that we're nobodys.
Actually, we're SOMEBODY'S!!! :-) LOL W

I think Caregivers are hugely important people. The people they provide care to also think that, even though sometimes they are so afraid or so ill that they don't know how to show their gratitude or they just can't.

I also think that the most important thing for us to do is to look inside our hearts and to do what we think is right. If we are true to ourselves, it doesn't matter what others think, because no one can know what we are really facing. I know it's difficult not to let the comments of other hurt us, but I know in the long run, we will be at peace with our decisions if we are true to ourselves.

I used to say to my mom and dad... please tell me your opinion on an issue, but know that I'm an adult and I may not take your suggestion. I welcome the input of others. Some of my friends told me NOT to move in with mom! That was their opinion and I welcome it, because they give me perspectives I may not have considered.

In the long run, I make the decisions that I believe in my heart are best. I take in all the inputs from those around me, then I make my OWN decision.

I wish all Caregivers peace in the long run.

You are all very, very, very special people!!!

There are a lot of us caregivers out there who have the same issues in regards to family. They just choose to let us take on the duty. The support is alway needed but seeing what we do as caregivers is something they feel is out of their realm. It's the hardest job I have ever done. I never asked for much from my siblings but with my immediate family, they were there and understood. I was one of the lucky ones.
I'm sorry you don't have the support of yours. They probably are uncomfortable with it. I'm sure that someday it will come back to bite them. It's just one of those things that you just do it because you have to. Good luck and God Bless.

Hands on caregiving isn't for everyone, but those that chose should be applauded with the respect they deserve.

People do not understand what us Caregivers go through. Until they walk in our shoes; they will never know. My siblings don't understand, because I have been the sole Caregiver for 2 disabled parents. My siblings live 1500 miles away. It takes a special person to be a Caregiver. We give up a lot of things to help those we love.
Those who don't have compassion for us Caregivers are those who don't understand. If someone doesn't understand. Tell them to walk a mile in your shoes; then see what they have to say. I tell my siblings this all the time. They are mean and selfish. I am the youngest and the "Mom" of the group. Go figure!
But just remember; you are doing an amazing job. Keep your head held high, because God knows what you are doing.
Those who can't understand, better hope someone will help them if they are ever in the same situation.
God Bless You!!!

I think it is like anything else, until you have experienced it - walked in their shoes, they have no idea! Their time will come and they will have an "aha" moment of their own. Of course, not everyone will understand or have compassion. Give yourself some peace in knowing that you have done what is/was the right thing for you. Namaste.

You will never regret the time you spend caring for your loved ones. No one will understand what sacrifices you have made to do so. Experience is the only thing that will teach the ignorant... even then some folks never learn. I know the comment can be hurtful, even when I pretend otherwise. After working for many years in an ICU, I have seen how people treat each other. Both ends of the scale here; cruel or mindless words, to those small acts of kindness can make a huge difference. Your selfless act of care is precious in a self-centered world, and we are blessed to have you in it. Even without words, you are teaching love.

Just say "Don't judge me until you walk a mile in my shoes"

I totally agree with the others. Please don't let it get to you that people don't understand. Most would not do what we do and their thing is to walk away and ignore it(I have siblings like that) and know that someone else will take care of the parent(s).
It's a shame that society is like this and we have gotten away from our roots where everyone helps with their parents/grandparents...its seems like people are in the selfish stage, which doesn't look like it will get better only worse.
I wonder what will happen to us when we get older. Who will help take care of us?
Do what you feel is right in your heart and ignore those that does not understand because they never will. Hugs to everyone that is a caregiver.

MMendez,

This is a problem for some individuals. I have been a caregiver for 2 years as well, when I am out with my mom I get two kinds of reactions. Their faces either say that I am nuts or their faces are filled with compassion. So their responses vary depending upon the age and experience. I tend to receive more compassion from older people or those that might be getting close to a caregiving situation.

Now in terms of a response, these are people you work with and you do not have to justify your decisions to them at all. You can simply say, I made a decision to care for my parents and I am glad I had this special time with them. Or you can say what I say sometimes, when people are driving me crazy or saying stupid things I become a bit sarcastic and I say. "She is my mother and unlike the rest of America, I do not believe my mom and the elderly are disposable like the rest of the US."

The US has more nursing homes than any other country because we dispose of our elderly into a nursing home where they are forgotten. In many cultures it is just a part of their life that they are expected to take care of their elderly and they do so. So for me, I either say nothing or I give my sarcastic response.

What I would say is you made a decision, focus on the happy times of the caregiving, forget the bad, and ignore people that think you were wrong in your decision, they will be the ones that someday will be looking for someone to care for them.

Caregiving is challenging work, but personally I find most of my challenges are outside sources and not dealing with my mom. I have made a very mental choice to focus on the fun and positive adventures versus the bad. I look at the things that makes my mom smile and laugh, the rest is just a distant memory.

Stay strong and don't let people get you down, remember someday they will be elderly and they will have to deal with their own problems.

To MMendez: I am very new to this forum so please take my comments with a grain of salt. I will tell you I am an attorney and I have chosen to stay home and be a caregiver for my wife who had a stroke. I obviously don't know all of your circumstances, but it seems to me you are a very sensitive and thoughtful person and that the decisions you made were because of your love for your parents. And for that some people have chosen to criticize you. I think you need to develop some thicker skin and not allow yourself to be affected by inconsiderate comments and uninvited opinions of others as to what you should or should not do. I think your actions are noble and should be applauded. There are legions of inconsiderate, rude and unintelligent people in this world. You happen to work with some of them. Don't let them get to you. When I am confronted with opinions I didn't ask for, I just say "I tell you what, you wipe your nose and I'll wipe mine". It has been my experience that that will shut them up. And who cares what they think in their muddled petty little minds as long as they keep it to themselves. Stay strong and my best wishes to you and your family.

Yes, everyone in family falls away after an acute health care crisis is over. I think it is because they don't want a financially-exhausted caregiver landing on their doorstep after the resources run out (but that's just my opinion). As for work, one has to be conscientious and diligent in their communications with and contributions to the workplace. With the right employer, this works out well, but the irony is, in a health care situation, choosing the right employer in these matters is just a couple of steps below choosing the right parents to gain hereditary advantages in terms of health and longevity.

Dear Mmendez,
God bless you mightily for your love and compassion for your parents. All of the above posts are perfect advice. Not all people are meant to be caregivers it is the toughest job in the world--much more difficult than just writing the checks and coming over to help clean and cook-as least those siblings can get into their car and drive home and then its all over for them, but for you? No, you are there 24/7. And believe me, God sees what you are doing and what you are feeling and going thru and you will be greatly blessed for what you are doing. Forget your co-workers, as jeannegibbs said, she always has such wise council; and your co-workers they just do not understand. Someday they will. We all will. The whole human race must go thru what we have gone thru or going thru right now and then they will totally understand and maybe remember what you told them and what you went thru. Not everybody can understand even if they are in that situation either, they may just pass it on to other siblings, woe to them in the end.
Your suffering is but for a season, we all go through it and there is a light at the end of the tunnel and His name is Jesus. Please turn to Him for strength and guidance and PEACE. Without Him, I would have lost my mind and already I am feeling the physical illnesses of what I went thru with my parents. But I have no regrets of caring for them. Its the least I can do to sacrifice for them. Mom used to vacuum and cook and carry me when I was a 6 month old baby when I had colic yelling and screaming in pain cause she didn't want to give me the meds the doc gave to her cause it only made me sleep. She didn't give put me away and get rid of me. And that is but one of a trillion things my Mom and Dad sacrificed for me. What could I have done for them to care for them now and in the past? EVERYTHING!!
ALL OUR LOVE TO YOU!

I like the idea of responding to inquiries with "why do you ask?" If your co-workers think you did a dumb thing, that's their opinion. You did what you had to do and you did the right thing for you and your parents. Hopefully, they will never have to make the tough choices you made. But when they do, offer your support and understanding because you've "been there, done that, go the t-shirt" and you are a better person for it. God bless.

Many helpful answers, compassionate answers and undeserving sufferers. But my heart breaks especially for you, ejbunicorn, because you tell of your profound depression. Probably many others do also, but don't mention it. Please consider getting psychological treatment for your depression. You deserve to lighten the load on your spirit. I am a psychotherapist and I know!

My experience is somewhat different from some of yours. I hired a caregiver while I went to work. My doctor husband developed dementia and retired at age 55. I still had 6 years before I would qualify for my pension from the public school system and wanted to max out my benefits. At age 59 1/2, I didn't renew my contract and retired six months before I could get pension, although it did kick in at a reduced rate later. During all this time, my husband (who had had a genius I.Q., a B.S. in chemistry, a B.S. in biology, a Master's in biochemistry, and his M.D. degree) degenerated to the point that he couldn't say anything except a few repetitive phases that I had to interpret according to the time of day or his expressions. Through all of this, his former colleagues gradually disappeared and my co-workers would only occasionally ask how he was doing. The only person who ever asked how I was doing was his neurologist and my own primary care doctor. The only person who helped, besides the hired help, was our daughter and her pre-teen kids. We have two sons who moved out of town shortly after their father was diagnosed. His own mother stated that I should put him in a nursing home. Talk about feeling abandoned. The only time the phone rings (besides our daughter) is political pollsters and businesses that are returning my call. Then, 2 years ago my sister had a stroke and moved in with us. She has recovered with limited use of her right hand, but she is able to do daily activities. Her husband has MD and is on oxygen and can't do much of anything. He and their daughter(their only child) moved in 5 months after she did. Our niece is stuck with the same thing I am, except her dad can still function-can talk, sorta walk, and feed himself, but need help showering, dressing and fixing food. He's on oxygen and will slowly deteriorate. She's only 23 and has no hopes of having a "normal" life-dating, job, friends her own age. My sister, her mother, does what she can to help but needs help herself to put on shoes or to cut up food.

We are ten years into this dementia and my husband is in good physical health despite the lack of brain function. He can't talk, walk, use the toilet, bath or feed himself. It's like taking care of a one year old that weighs 170 lb. I do have personal care 3 days a week through VA and 30 days respite care through them. I will continue caring for him until I'm no longer physically able. I broke an ankle about 7 years ago which still hurts, I have been in the hospital twice in the last 3 years, and I have gained too much weight-stress and boredom. When I can no longer care for him or my husband passes, I'll sell our house, put my sister and her husband in AL and free my niece. Right now they are resisting AL, but if I sell my house they will have no choice.
I want to thank all of you for the great job you are doing for your loved ones. Remember that unless you have been a caregiver, you have no idea what it entails. People shy away from things that make them uncomfortable. I'm sure some of my husband's colleagues remembered how brilliant he was and realized that could happen to one of them and so hid from it. No one used to use the "c" word and now no one wants to say the "d" word.
Reach out and ask for help from your church, the VA, and compassionate care groups. Contact your Alzheimer's office, a church based hospital, adult daycare, Area Agency for Aging for help. Medicare pays for therapists to come to your house for homebound patients. My husband has had two rounds of occupational and physical therapy and one round of speech therapy all paid in full by Medicare. There is help out there, you just have to look for it.

Personally, I think some of the criticism and negative talk stems from fear and shame. My siblings gave me a LOT of grief for caring for my parents and now visiting my mother every weekend (they do neither), and I think it's because they feel guilty that THEY don't visit or make some sacrifices for them, but I also think in my case, it's because they don't value me in the first place. They always act like everything I do is questionable or stupid or over-wrought. At least I can sleep at night! And my mom gets some companionship, care, and visits. She's always longing for them, though. She's very different when they do visit, she allows them to hug and kiss her, and is very happy. All my life my mother has pushed me away, and I've never been allowed to hug or kiss her once I got to about kingergarden/1st grade. I remember even my dad pushed me away one night when I was in the 1st grade. I went to give him my usual hug and kiss and he push me away and gruffy said, "You're getting a little too old for that." And that was that.... sad, but I'm guessing different generation/cultural norms or whatever.

As a caregiver I have found one needs to be true to ones ownself. I had been seeing my significant other for two and a half years when he had a massive stroke at 61.
I could have left but I didn't. I quit working and retired to take care of him because the other option was the nursing home. There were others in the family who could have helped but didn't. I don't get any thank yous or any real support except for one sister(he has 3 children) No know understands except other caregivers. Do what you need to do to look yourself in the mirror and be happy with what you see.Also church affiliation is usually a good support. Best of luck to you

God bless you and your Mom. Those who are critical of you now will age and wish they had someone as loving and caring as you to care for them. Caregiving is not easy, but it is right and it is good. We've all made the right decision to care for our loved ones. I take one day at a time and stay prayerful and thankful.

To dkjellander: I love that you take your mother out and let her have fun. I took my husband out as long as I could. He is no longer able to feed himself and gets stressed in unfamiliar places now. But when I did take him out, I would just explain that he was sometimes loud and messy and ask to be seated away from other guests.
People would comment that they thought it was wonderful that I went out to eat or to a movie with him. Several people stopped to say they were or had been caregivers and offered prayers. Some people gave us a funny or disapproving look, but if they had a problem with us having a dinner date, it was just that--their problem.