Why do people have no compassion for caregiving?

I am #6 of my mother's 7 kids, and the youngest daughter. From ages 23-40, I cared for my mother. I have two friends who tried to get me to liberate myself from the care of my mother, and I refused. Eventually, they saw that I'd made the correct choice by continuing to care for my mother. One apologized for having tried to make me stop caregiving, and admitted that she just didn't understand. I think answers given here provide you with the right answers: you can't let your caregiving bleed into your work life, people respond negatively because you make them look bad (they think) and they feel guilty--my siblings did this to me (we all live in the same city, by the way), and most people just don't get it because they have lived for themselves their entire lives, and the idea of sacrificing for another "grown" person is ridiculous to them. Children should see their parents doing caregiving because it teaches them compassion and how to care for someone else. When my mom passed away in January, my siblings cried tears of guilt, whereas I was actually missing a the person, and not regretting what I didn't do for my mother. So, you can tell people that your mother/parents took care of you, and now you'd like to return the favor, and you'd like to live a life without regrets and how they live their lives is their choice. Also, don't let people insult you, especially not about this. Remind them that caring for others is never stupid. My two cents.

To Twotonne: Our plan is to take her out as long as we can. I don't worry about the looks or what people think, someday it will be them. Thanks to a lot of time in business and having to manage employees, I have a pretty tough skin. Mom doesn't seem to notice when people look.

We take her out site seeing and to events at RV parks, with no issues. We travel in a 5th wheel and it helps the moods a lot. We actually have people that offer to help us get her in and out of the 5th wheel.

I have learned that Medicare will not give us all the tools we need, so we just work around them to make them happen to the best of our abilities. We look for ways to overcome and I do not take much crap. I don't know if that makes me a bad person or not, but I am trying to make my mom's last days the best possible. My older sister who lives near my mom for 12 years refused to take mom out more than a couple of times a week. Mom was fine, she cared for herself, the only thing was mom didn't have a driver's license to drive. I think my sister and her husband did not do right by my mom, but that is a long sorted story. So we try to show her what she longs to see before she goes and give her and us that memory. The memories are priceless and they will be ones that my siblings do not have because of their choices.

However, there will come a day when she won't be able to go out and we are bracing for it. Until that time though, we re going to cover as much ground as we humanly can.

Employers get mad enough when you take a long leave of absence for your own health! So it's even worse when you take one to care for others. Until people do something like this in their own lives, they will never get it. Then they will see that it's not an easy or lazy job at all.

If you are satisfied with your responsibility as a caregiver and are back to work, that is the most valuable aspect for you. Many do not appreciate or understand that which they have not experienced, but we all fall into that category in some way. Some have lessons of humility, some of independence. Each of us must do our own thing and not judge or wonder about others.
I do think that many caregivers are looking for recognition for doing a difficult job, and all of us here give that. Once in awhile you will meet someone out in the world who gets it, but most have the "deer in headlights" look.
Think of their shock if and when they are awakened to a life of caregiving. I would laugh if it were not so painfully sad.

Please understand that caregiving is an act of love. Those of us who are caregivers or have been a caregiver do it for love. There is no greater calling.
Those who make inappropriate remarks about caregiving simply have not walked in a caregiver's shoes. Please ignore those who do not understand and be happy with your decision. You will be blessed I assure you. As a facilitator for an Alzheimer's caregiver support group, the first thing I tell all caregivers is take care of their health and well being and second to focus on what is best & works for the person you are caring for. When I was caring for my late husband as he navigated through the Alzheimer's maze, one of the things I heard most from his family & friends was, "he doesn't recognize me" so they did not visit. It is true perhaps that he did not recognize them but then they recognized him and should have honored him with a visit from time to time. We never know when the shoe might be on the other foot.Think on it!

I took care of both of my parents. I was an only child and needed to work each day. However, I experienced so of what you have received from people who
do not want to care for their parents. I think they see in you what they should have done for their parents and rather than dealing with that guilt quietly they decide to lash out at you as being the person who in their opinion is out of line.

Being able to care for an elderly parent does make us better people. It is an honor that not everyone has the chance to receive. Frankly the co workers who ran away from their responsibility also will never gain that special relationship you have as a child caregiver for an elderly parent. Their loss.

I would simply tell them you feel honored to be able to help your parents. However, I would write them off as people you should never depend upon. If they can't help their parents, they will not be there for their spouses or children or co-workers.

You did the right thing, you already know it. Bless you.

Elizabeth

This is typical sex description. Woman are not valued for performing traditional female roles. Problem with our society: institutions are taking care of our children and our elders. Even other women do not support us because they won't look tough like their male counterparts.

So your co-workers are going to criticize you because you took time off to care for your parents? I think that was a very loving, unselfish act, and an excellent example to set for your own children. I'm sure you will have better care from your children than they will have from theirs :) .

I'm a bit amazed that you were able to return to your old job after a two-year absence. That's a really decent organization you work for. Kudos to them for keeping your post available to you. I left my job nearly 5 years ago and wouldn't in a million years ever expect to get it back! They may not understand what you've gone through, but then, it doesn't matter what they think. It only matters what you think of yourself and your decision. You very clearly know you did the right thing for your family and yourself. So kudos to you too!

I have no advice for you, because in your role as a family caregiver, you are not, in the eyes of the society a productive person. You don't merit a salary or benefits, don't have an important title or a big office, things people value as important measures of success and worthy or respect. Who, if they could do something else, would take a job which requires hard work under stressful and isolated conditions, no relief shift, long hours, no benefits and by the way, no pay either?

We live in a two faced society: we pretend to value family, yet we don't give any value to caregivers who do the family value work.. Our economy is based on creating more useless products purchased from other countries that in short time break down or become outdated. Not on caring about others.

Family members caring for the sick and elderly should be given work credit for what they do in the form of government contributions toward their social security retirement and health insurance funds. Without many caregivers tolling for free, there would be many more people in nursing homes on Medicaid. Yes, I'm saying our "productive" working friends and families should be contributing to our future benefits b/c we are working for free so they can work for money. Our USA economy should focus on "products" needed that represent our values, like buliding and staffing reasonably priced but quality assisted living facilities and subsidized senior housing and ensuring that those who are paid to work as aides caring for the elderly and disabled are hired in sufficient numbers in facilities so they are not overworked and those who work in our homes are provided decent wages and health insurance. If our society doesn't care enough to make sure paid aides get decent benefits, why should they care at all about the unpaid family caregivers like us?

I live in a city where there are tons of vacant store spaces, yet, what are they building? more commercial shopping centers.They are years long waiting lists for elderly to get meals and decent affordable senior and assisted living housing or some in home state subsidized care. When a new assisted living facility is built, it is priced out of reach of the average retiree. I fear what's going to happen in the future is that when baby boomers retire because they have tried to focus on their families and haven't had the ability to accumulate a big enough nest egg , they are not going to be able to afford a place to live and receive care in their final years.

Soon we will be like a country like China with ghost towns like those featured on 60 minutes recently and laws needed to make children take care of their parents.

I can understand completely your frustration. I am a single woman caring for my 95 year old mother. She has lived with me for 4 years now. She is a peach - sweet as can be - but has mild dementia and i have to do everything for her. I work full time and own a home. I am on overload and i feel that my family and my co-workers are totally clueless as to what my life entails. and truthfully - i dont thin they ever will unless they someday find themselves in this situation. there is no way someone who is not a caregiver can possibly comprehend the situation - including the range of emotions that go along with it. i really feel for you. this is a great site to unload on and get the support of those who understand. for myself, i have decided that i will never get my family (for me the most insensitive people to my situation are my own family who live 10 minutes away) to understand what i am going through. but my mom knows how hard i am working to make her life full and keep her healthy and well-cared for. and God knows. and that is all that matters. unfortunately, it has caused me to feel anger and resentment towards my family. God Bless you. You're doing an amazing thing! Most people would not do it.

These are the days of "unatural affection". Our society generally has little to no affection for thier aged and ill parents. Little to no affection for thier children when they become "bothersome". Little to no affection for thier spouses during difficult times. When the situation(s) become challenging and the going gets tough, it is simply easier to bail out or not show up "for the dance". The courage to do what's right and the integrity to fulfill family obligations are a mystery to the multitudes. Caregivers are a small minority that wear an invisable T-shirt reading "Committed" and a stamp on thier head that reads "Martyr". Why would we do such a thing??? Because of this thing called "love". We live our life outward not inward. For me, as hard as it is...I wouldn't have it any other way.

My applause to yo and the executives of the company for which you work. I wish would be more of that special kind. For 3 years I had had the notice of an initial condition of dementia in my wife. For the last 6 months it clearly increased. Before that, only in situations of living very closely, some people noticed something strange. This last months it has being clear for some of our friends, more than some. Finally, with the comments of one, I decided to make a good set of examns, including a GP and a neurologist, plus a psychologist. Lots of tests, and my wife without understanding why. So, after having a clear diagnostic for AD, I sent a short notice to some friends and family and wait to see what will happen.All of them answer dlicate and precious notes. I thank them very much. But...
What happened is that only four of the friends and one daughter became close to us. Inviting us and seeing us very closedly. And looking for ways to be next to us. The other just desapeared. As I tought would happen. Well, perhaps tuhat is human condition.
I have tought alot about and reached a couple of conclusions: one is that most are afraid, worry of being at risk themselves, or someone close, worry and afraid of seing at a close range a disease like they may have.. We have 70 and 74, therefore, our friends range from 45 to 70 , within the age of risk.
The second was mentioned before, they may be afraid of being asked to assist, somehow.
Anyhow Mendez, you are doing a beautiful job, don´t listen. Someone told me: if some peson does not care about you, is not your frfiend , forget it.
We have a much more important job: to care for aour love ones. That is above everything else. And like the greeks said: Wait patiently and you will see theit bodies pass by. I am not willing harm, just trying to be rational.
The actual risk of those diseases is much grater than any time before. And we are in the front line.
Many hugs and kisses to all (we) caregivers

I believe it is hard for most people to understand because they have not walked a mile in your (caregivers) shoes. Most people have a heart and just don't want to understand. Others are just too selfish. I myself have been doing it for 6 years. Many days are very hard although the good days make me forget the hard part of all of it. When someone asks me what I do for a living I proudly say I help my mother and father with their daily lives because they need me. My husband works a decent job and is happy. I have two grownup sons,21 & 22. My sons are both in college,one still at home and the other an hour and half away. Without the three of them I would have lost it long ago. What people say or don't understand really doesn't concern me. As long as my family is healthy, safe, and happy I could care less what others think. Including the other siblings or brother in laws. Keep smiling and keep your chin up. There is nothing better than knowing what you are doing makes your heart happy! I wish you the best!

Gee, cookiemeachum, that is a pretty sweeping indictment. Our whole society doesn't have affection for bothersome children or ill elders or difficult spouses? And yet look at all the people on this board who are caring for elders. And look at the AARP statistics about the growing number of persons in the workforce who are also caregiving a parent at home.

Look at the awesome hospice services available here, and the people who dedicate their careers for providing comfort on the final leg of life's journey, and the social institutions (like Medicare) that make that possible.

It may be true that advertisers don't especially love the elderly, but that doesn't seem to me a good representation of American society.

There are definitely people who lack the courage or the motivation to do what is right. (There always have been.) I just don't think those people are the majority in our society.

Eventually they will probably come to understand, sadly. It is like grief, until you have experienced it, it can not be fully understood.

You have done an extraordinary task, and now return to do the regular work tasks.
You will be working thru handling your stress levels for some time--be gentle with yourself!
Co-workers/bosses often have very misconceived notions that caregiving is simply providing a bit of chicken soup or some piffly thing--they have no idea how graphic and stressful it is.
Guesstimating about 99% of the time, those doing the criticizing, are actually angry with their own issues or shortcomings, NOT yours, but your situation gives them some sort of perverse permission to speak or act out inappropriately.
SUGGESTION:
When coworkers ask something like, "How are you?" Or, "So, how was your vacation?"
You could answer: "It's sweet of you to ask; here's a website that can explain it better than I can--it can give some insight to how my time off was."
!!! [[then give them this website...]][[maybe even one or two of the posts that have the very most difficult responses/issues posted for them]]
They'll either take a look, or they won't.
If they do, they learn you were NOT on vacation.
If they don't, you have wasted no breath on answers they didn't want to hear, & they start leaving you alone, anyway--because they did their "due diligence [such as it is], by asking you how things have been with you, and you gave them a gracious stock-answer.
And MAYBE, they will remember the website when it's their turn to deal with this, themselves.
You were very lucky laws where you are, required letting you back on your job.
That's a blessing.
There will always be clods who are painfully ignorant--but it's not you, it's THEM.

In my case -the shoe is on the other foot. My family will not tell me the condition of my mom. They kept secret the " selling " of the family home and buying of a new one. ( I found out by chance on the internet- they had sold it) Also the selling off of all my moms stocks. They never tell me when she was hospitalized.
I offered so many times to move back home so I could help and give them a break but my older sister and I are left out of any discussion about moms health. I honestly don't even know if she is alive. I don't even have her phone number.And I have written by mail over and over but nobody writes me back.
It has broken my heart a million times over...
I work in an Assisted Living home and so each chance I can offer just a small token of caring I try.Whether it is to the person there or their family. My motto has become -"Small works with Great Love" (Mother Teresa...)
Many hugs to you who feel misunderstood in this horrible world of sickness.

Not everyone has the same relationship with their parents as we do. I feel sorry for them that they never had the love and connection we were so fortunate to have. People can pretty much think what they think. All I know is when I get up everyday I know I did the best that I could do and wouldn't change it and I would do it again. ( I have actually said to a lady that just butted in and said why didn't you just put her in a home) My responce was.. I'm really sorry you have never been capable of taking care of anyone but yourself. Smiled said have a nice day and walked away.... it felt good to know she was standing there feeling like piece of crap.

I know my mom would never have acted out the way she did with dementia...the disease did this to her. I loved her regardless. She did not deserve to go this way. She was the best mom ever. I will never regret that I did my best for her and never gave up. God bless the caregivers!

Thoughtless comments fly in all directions. It is never acceptable to be nasty when one knows better. Not everyone takes on the caregiving responsibility out of pure love and an idyllic relationship. Doing the right and honorable thing is simply the humane and civilized way to behave.
My Mother never showed patience, encouragement, affection, or listened to me as a child. I was scared of her nasty, selfish shrieking. Still, as a mature adult I knew the right thing to do was to take care of her when the time came. It was a bit of a shock that the other 2 siblings--the oldest girl and youngest boy-- were not equipped for various reasons.
One way to respond to people who don't understand the gift of caregiving is to say "maybe one day you will have the opportunity to sacrifice for compassion's sake." And yes, it is a sacrifice if you were living your own life and now have to put certain plans on hold. I don't like it, but I will accept it.

I know a guy whose boss recently gave him a cold talkin' to because he took 4 days off to tend to his mother who lived in another state. She had fallen, breaking a hip, and needed to be placed in a rehab facility. He has worked at this company for over 20 years, but with new corporate owners. He was shocked at the lack of compassion and understanding from his boss and now feels torn and worried about future trips that undoubtedly will be necessary for his mother.

I have a business and when my mother was in declining health I warned a "high maintenance" first time client of the circumstances and later told her of my mother's expected death "within hours". I assured the client that her order would be completed by her deadline, two months away. She acknowledged my comments and shared a personal story like "she knows how that is", caring for an aging parent because she had just had to fly home to attend to her mother, who was having an amputation. I thought, great, no added pressure from her during this already tough time. Wrong! The day of my mother's funeral, 4 days later, this woman is wanting to know the status/progress of her order! While I had no doubt the order could be completed very soon and way before her deadline, especially now that my time and energy weren't divided, I coldly informed her that I no longer wanted her business and suggested that while she has time, to find another company. And I recommended other companies to contact. I thought her behavior was so appalling, the hundreds of dollars I gave up, was worth getting her and her headaches out of my life.

I don't know why their are people like this. I can not guess, these people with a lack of compassion, also have a lack of family in their lives. They are not close to their parents & family, had a bad childhood or feel removed from the family thing and therefore can not relate. Or, maybe it's jealousy acting out towards those who have what they don't.

I know there are exployers who stay away from hiring women because they know that women need to take off from work more for child care and family issues. I've also heard that many businesses have an attitude that pregnant women need not apply, due to the time off and medical expenses that are coming.

Is the Family Care Act limited to only taking time off for immediate family? Births & child care? Or does it apply to any care for any family member?

When I read stories like twotonne's I want to cry for them and for me because I know this is what I face...but how?? I just don't know how I will handle it? No life, no friends, nothing fun or exciting...just the same drudgery day in and day out for who knows how long? am I being mean and selfish? No, just realistic. I don't want to be a martyr. I don't think that anyone should be. If you can't care for someone without feeling resentful and like a prisoner, then by all means get help somewhere!

One lady said to me that is marriage For better or worse

to lizann - first of all - you've got my name - i had to use lizzieann because lizann was taken :) :) i agree with you that taking care of a parent is an honor. i have said that to my nephew and he looked at me like i was nuts. but my mom was such a great role model - she was a professional musician and also volunteered throughout the community. she had a neat life, lots of great experiences and opportunities and was admired and respected. and i feel so honored that God has entrusted me with her care now. there are times when i get frustrated and feel like i'm missing out on life, but mostly i just try to make the most of every moment with my mom knowing that it's just a matter of time and she'll be gone and then i will miss her terribly.

Lizzieann: You have got it correct--you are lucky to have your mother in your care. After they are gone, you will have tons of time but the meaningful caregiving role and their company is gone. It is a let down, but part of the nature order which I am "learning" to accept. It is a process.
I also know the frustrations/stress of caregiving. Most of that was due to society which doesn't make it easy to be a family caregiver. Hang in there.
You are doing very important work.

Ignorance. As several have mentioned, people don't understand until they have been through it themselves. I think this is the bottom line. And, many don't have an open mind....can't see both sides of the story....again, until they have been through it. Some will never be responsible for a family member's care....whether by choice or situational.

because caregivers remind people of their obligations and they don't WANT to be reminded of that.

My mom was in critical care for 8 mos. and during that time my dad grew tired and lost about 100 pounds and him and I both thought it ws due to stress (because he could never sleep without my mom) . My mom was thought not to survive too much longer so my dad made arrangements for her funeral. During these months while my dad was declining I took him to an emergency room where we found out he had cancer 4th stage. One parent in one hospital and the other one in a different and all of us 200 miles from home. Not like it mattered since I have only been the 1 to care for them out of 5 siblings. So they put dad in hospice wing and my daddy asked me to take him and my mom home and take care of them till he died so I discharged both parents out of seperate hospitals and drove them home where I put my daddy on hospice at home my mom was bedridden on feeding tube and wounds that went all the way to her insides and my daddy passed in 3 mos. My mom was misdiagnosed I took her to get tube out and worked with her daily to walk. Now she has moderate dementia and she walks and wanders all hours of the night. But when I knew my parents needed me I felt HONORED instantly without any thought of what I would be going through. I know I'm saving All of my blessings for Heaven, just at times I feel so exhausted. Now that I am working it seems harder. Even though I have my family here taking turns with my mom. I know she resents me because I don't spend as much time with her as I use to but she is ok for now. She has dementia and that is her only ailment. My life is full and I am grateful I'm here and I know I have a big heart. My grama use to tell me I wear my heart around me ever since I was a little girl so I wear it Proudly. I'm grateful I'm Me...............

I forgot to mention that while I was at my job previously, I was top producer in any dept. I was placed in. I learned the company well and when I did ask for my job back they never hesitated but with warning of my absenses. I work 12 hr. days from 4am-4pm just to prove myself worthy and that I am grateful of them hiring me back. I ALWAYS have a smile on my face and am pleasant with everyone inspite of their comments. I have a placard on my desk that reads "Good Morning, this is God, Today I will be handling All of your problems" This has helped me put my feelings back in order. I don't need to explain myself like others have suggested, and Now I ask God to forgive them because heaven forbid they get old and need help themselves. I'm humble and very grateful for the choices I've made. I accept their ignorance for not knowing what it is to wear a caregivers shoes. I'm so THANKFUL for the comments and the advice All of you will never know just how grateful I am. Thank You A MILLION.... I can now put my head high and roll with the punches. I don't feel them no more and it gets easier as the days go by. And pretty soon I won't be the talk at everyones dinner table, or the snickers of why I was able to take a 2 year "vacation" and still be hired back. Ignorance, Jealousy are no good. But I would do it all over again if given the chance. I feel Soo Blessed to have found this website. I haven't been on in a few days for lack of sleep but the smile that you all put on my face was Priceless (my husband and children says)..... God Bless You ALL........