I agree Jessebelle. We are living in a society that is all about "me."

Did you ever read the Purpose Driven Life by Rick Warren?
Here is the first sentence in the book:
"It's not about you."

Caregivers do the job out of necessity. At least I do. I am not a wonderful, uniquely special, compassionate person with a special gift for caregiving.
But when the need arose...........somebody needed to step up. So I put my head down and got to work.
My sweet husband always said: "a man's got to do what a man's got to do. "
So now.............well, in my case: " a woman's got to do what a woman's got to do."

Something that I have been considering lately is the problem of aging in America. People talk about how the government has not set up to handle the problem effectively. After seeing what is going on with myself and others I realized that the government is set up, but the families are not. Families are not used to their parents living so long. In a socialist society there can be care for each person -- equality at any age. But the US is not socialist, so care falls to the individuals and their families.

People in the US tend to be self-centered. They have their job, their spouses, their children. This is their responsibility. In the past it worked, because the elder generation tended to pass on when the next generation was in their middle years and deaths tended not to be lingering. Families have not adjusted to the new normal. What happens now is that either no child steps up or one child who is less self centered (or has less responsibilities) does.

I don't know if our government can provide any more answers than they do now through Medicaid. The families are going to have to deal with the new normal. It doesn't look good when you think of how vain and narcissistic the US has become.

I agree the burden and the joy should not fall on one person. I never know when I am going to get a break...the care for this one person sometimes...gets to me, I do not have time for a job, the daily eating habits of this women are poor and water drinking??? forget about it, but the fascination with tissues and napkins, her OCD's with her glasses and a purse (she has not had for several years) make me too tired for anything else...does anyone have any ideas for the prolonged meal wait throughs and the drinking of liquids???
I spent my vacation to a neighboring state waiting for her to get through her meals, it is getting to be 2 hours a piece to eat a bowl of cereal and drink a cup of coffee...

lwentanon and radiator81, thank you so much for your comments, I am in midst of caregiver burnout, I'm the only one who does anything for my parents, 3 siblings are all able to live their own lives and never ever have to deal with running to RiteAid in the middle of the night, or afternoon, or whenever.....or the emergency room scenario, having to recount the medical history, what are their current RX doses, when was their last immunization, all that stuff I have to be responsible for.
I do have an informal caregiver for them, once a week, but believe me, it was like "you dirty dog, you're abandoning mom & dad" when I got that one little bit of relief.
I know my only reward is Heavenly, and I hope when they get there they will be forced to feel how abandoned I do feel, and how much I have sacrificed and lost in my own career (yes I do have a career!).
They have prospered in their fields, been able to dote on their children, and take vacations whenever the fancy hits them. OTOH when I want to get away for a few days, I have to plan it all out with various caregivers, dispense all the current medical issues, etc.
Some people say we caregivers should be able to get paid or a tax break or something.....that would be really hard to imagine, how to do that. But at the very least Congress should pass a law that no one child should have to take all the care of the parents, when there are other siblings, it's just not fair, and as a country we should try to make it more fair (it never will be totally fair but doesn' t mean we shouldn't try to alleviate the suffereing).

Your comments about them shirking responsibility to their mother is EXACTLY what a friend told me. I wrote that in an email to my oldest brother and let me tell you I was lambasted royally. I never replied to their seething and hateful response and I am sure that just killed them. They continue on as the others in their own selfish ways.

I met a guy who told me my siblings were in "denial" and this is how they "justify" their selfish behavior. Their perspective (since they have never done what I have done or any other caregiver) is their truth. They cannot see through it. They might as well be blind as they are figuratively.

I do not understand how sibs cannot expand their minds and put themselves in the caregivers place, but selfish is their middle name! They do not want to. So yes, Iwentanon, I agree about what goes around comes around! And it will be "delicious" for me, when they get their Just Desserts!! Yummy, yummy!

Being under-appreciated or unappreciated, by the other children of your mother is natures way of them not accepting and shirking their responsibility as the children of their mother, those children should be pitching in to pay you and do not because they are selfish and also think that caregiving is beneath them, not only would they not do the job for free, they would not accept it as a job.

Someone said they model, yes and if they have children, their children that they think they have supported (and bought for) are going to do the same for them will be greatly mistaken, only to find out when it is too late! What goes around, come around!

My mom does not think I am caregiving her and neither do her other 6 children. They do not get the paramedic phone calls, or being woken up in the night. Or having to scrape her off the floor after she crapped her pants and it is everywhere when she became dizzy on the toilet!

They only do the fun stuff like parties etc.. They never ask if she needs anything. She tells me they tell her to just ask. Of course they know she never will- that is why they tell her that, but instead she depends on me. I tell her most people get paid to do what I do. She does not believe it. She thinks I have a great deal with free rent and some money for food from her. She does not think my time is important, or that I use gas to do all the errands and my hours of taking care of her home. My siblings are a selfish bunch and they stick together like sheeple. This way they can consort with each other about how good I have it and how I am taking advantage of my mom! As others have said, "Karma Baby..Karma." I hope I can "hear or witness" as they surely do not care about me. My friend says you model for your children and they have done exactly that. Nothing to show what they should be doing. The rich brother thinks he can "buy" my mom, as he did before. This time she is falling for it. So glad when I can make the break. I have given up so much in the last 10 years, including work, I may never be employed again. My mom refuses to believe I gave up a job for her. Why are people so mean and in denial?

Caregiving is a thankless job. I will NEVER do it again when I am not appreciated. I know I did the right thing, but it has taken a monetary, physical and emotional toll. And though I know it should feel like the right thing, I would never repeat it if I had to do it all over again. Not with the family I have!

Carol’s article, “Family Caregivers Still Undervalued by Many” certainly resonated with many of us! In response to LILDEB’s statement, “There should be a pamphlet made BY CAREGIVERS for potential caregivers WARNING them of all the hazards—I did exactly that. “What to Do about Mama?” was written for caregivers by caregivers. It isn’t a book by “experts,” but by people in the trenches—to help you develop realistic goals and expectations and strategies to keep your sanity through the trials and tribulations of caregiving. The book deals with the issues you have all addressed—and more. For example:
• Like LILDEB, I learned the hard way that there was a limit to what I could do, and had to say “enough” when I required knee replacements.
• Like Marsha530, I received accolades from friends, acquaintances, and strangers. SISTERS2’S comment that caregivers deserve more rewards than can ever be bestowed upon them reminded me of the remark I often heard, “Your reward will be in heaven.” Do you think it is a possibility that grandchildren or in-laws are shown a little more respect from the public than the “daughters” who are filling a more “expected” role?
• But then again, like OLDCODGER2, whose MIL feels and tells others that she “has it made,” my MIL said, “Everything is for your convenience!”
• To WUVSICECREAM, who pointed out that “the others” complain about why the caregiver did this or that—remind them of the ground rule: “If they want to weigh in on what the solution should be, they have to participate in the process that leads up to that.”
• And finally, to GLADIMHERE and NICHOLAS29, who both brought up some of the financial aspects of caregiving: One means of accomplishing “Aging in Place” (at least here in PA) is through a Personal Service Agreement or Caregiver Contract. The agreement provides family members compensation for quitting a job to take on the responsibility of caregiving. It recognizes the sacrifice of family members who give up income, and acknowledges the astronomical costs of assisted-living facilities or hiring in-home help. So sometimes, with digging, you CAN find a little bit of logic out there.
Barbara

I think their needs to be some laws changed regarding caregiving...
for instance, why should the caregiving be free? It seems in my opinion that when the word "free" is attached, no one has a value for it...it also goes for the son's that stayed at home, without them the building would not be maintained, the rooms would never have been painted, the senior would have been more lonely or lost their will to live.
Seniors do need to pay for their care, if the senior does not qualify for medicare, then the insurance should kick in...

Beautiful thoughts...

Great article Carol! What I've come to realize through caring for my father 24/7 (with the help of my sister) is that the difference between a full time job say...40 hours a week and being a full time caregiver...168 hours a week is 128 hours. It's more than a full time job. Add on the fact that a caregiver is responsible for another human being and all that involves...washing, dressing, feeding, toileting, medications, doctor appointments, entertainment and keeping one safe. Possibly the emotional decision to bring in hospice. Day in and day out, you begin to live the life of the person that you are caring for. It's not their fault, it has to be done. Your caring for a human being and not an inanimate object that involves many emotions and stress. Add in the responsibility of home...cleaning, cooking, laundry, maintenance, lawn care, snow removal and bills. A caregiver wears many different hats.
In my work as a paid caregiver, after my shift was over, I got to go home. Spend time with my family, sleep in my own bed and plan the rest of my day. I (finally) got that the rest of my sibs didn't have to help with any of the many responsibilities but there was no appreciation and true understanding of the enormity of it all. Often rudeness out of their own guilt. That hurts. That's what added to an already stressful situation.
It's true many outsiders have no idea of the full magnitude of caregiving 24/7. If they stop and think about it and try to imagine what it must be like then they might have a small picture.

Excellent article. More people need to read it and I plan to share it with those who do not understand what I do for my Mom. I prefer to have her AT home rather than IN a home. I get criticized that what I am doing is not contributing to the economy like an office position. Perhaps health insurers should contribute to the expenses of a caregiver because if the caregiving were to cease the patient may incur expensive care in a hospital or rehab center. But they do not want to listen to logic.

My life is written above ! I took five days off recently and paid over $1000 to put her in a facility. I had to have time off and no family members would help me. It is hard, yes. It is thankless, yes. I do ask my brother to help. He has five weeks vacation, and it is to no avail. My mom is 84 and just finally diagnosed with dementia. It is getting more and more difficult daily to care for her. She won't qualify for Medicaid so I am the only option. I am on anti depressants and have gained thirty pounds in the 3 1/2 years she has lived with me. Not happy about that, but she is my mom, I love her and I am HER best option....

I have been a 24/7 carer for the past 12 years never had a holiday for the pass 13 years, had to lose all of my friends, a horrific unpaid career in the name of love for my wife

It has totally changed my outlook to life and my feelings towards the human race.

I don't know about others, but a lot of the problem I have being a caregiver is my self image. I have some retirement savings, but I know I'll need it in the future. I'm not making much now. I would love to have new clothes, but I'm afraid to spend money. My car is looking pretty dilapidated and it leaks! But I really can't afford to get another as long as this one is running. My mother doesn't pay or contribute anything but the two rooms I live in. My income is limited to what I sell in my online shop. I make enough to get by, but not enough to live like I'm used to. It's superficial, I know, but I would love to buy a new pair of jeans and some other simple clothes without worrying. I'm not talking about fancy things, just the normal things of life that cost so much these days.

I found a great website this morning when searching for states that permit family caregivers being paid. This link will take you to a document that provides contacts within states that permit the payment for family caregivers.

http://www.pascenter.org/documents/paid_family_caregiver_programs.pdf

As with most things in life - whether it be birth, marriage, divorce, OR care giving - it is practically impossible for someone who has not actually experienced it to truly understand the dynamics. I certainly did not understand the grief of losing a child until it happened to us. I do not even attempt to say I understand the grief of widowhood or divorce - have never been there and would never assume to know how it hurts. The same with care giving. There was no way to know how it feels until I did it. And it does not always feel good.

We enter into care giving out of love or as a noble gesture without knowing the toll it is going to take on our lives, health, finances.

There are two other siblings who have done ABSOLUTELY NOTHING during the 8 years on care giving in our home to help us in ANY way - even when we beg. WE WILL NO LONGER BEG. They can go to 'wherever' ....... How they sleep at night is the question.

But, I have learned the hard way that there is a LIMIT to what a human being can do or what we should expect of ourselves. And there is NO SHAME is saying I have had enough or I cannot do this anymore. Especially when your own health fails.

I, too, wish there were more information in the media to educate others about the important JOB care givers are doing. Think of the money we are saving the U.S. Government by caring for the elderly in homes. Do we get a weeks paid vacation per year? NO! We have to beg someone to help us care for them or pay for their care elsewhere out of our own pocket just to get a break. And don't you love those who wonder WHY WE NEED A BREAK - after all, we are home all the time - how hard can that be? My own charge - my dear MIL - feels and tells others that I 'have it made.......'

There should be a pamphlet made BY CARE GIVERS for potential care givers WARNING them of all the hazards. Most of us go into this with blinders on and looking through 'rose colored glasses..........'

Carol, great article however, the only ones reading these r those who r the 'caregivers.' I think we need more care-giving education to the public. Newspapers, magazine would be great, to television ads to short sitcoms. Not to get the public and family members to appreciate what we do, yet to understand and learned that it is a job in half! That it is no different than any other job except some people get to go home and start all over the next day, but not the live-in 24/7 caregivers! Then, just maybe, through education, caregivers will be out from the dark and get the respect from the public people as well as from family members. I recently went off on a family member during a short-luncheon. We were both discussing about going to see relatives around the same time. However, his schedule had him coming n going only for a one day break. Mine was for a two day break. For some reason he had to mention that, "others have to go back to work." That was it! That was all it took for me to blow a gasket! I felt a little embarrassed at the restaurant for the whole place could here me roar. Needless to say, we both will not be leaving 'together' for that trip and I understand his reason. However, I have a job, a job 24/7 without pay, a job that doesn't just stop because I am at home. Needless to say, he has help me and my husband to be able to take a short break coming soon. Either he thinks I am one crazy sister or he loves me as a sister and understands a little. I think we need public education for the people that are in the dark of what is a 'care-giver.' Not only will they understand a little more, but maybe family members will start offering help and it will help other what to come as being a caregiver too.

I have to say I was surprised at this article. Since becoming my Gma's caregiver I have had nothing but praise and support from not just friends, but complete strangers I've just met when I tell them what I do. Maybe it's because my Gma has dementia and there are big challenges that come with that, but in any full time caregiving situation there are big challenges.

Or maybe I just have really amazing friends and family who support me ;)

I know I talk about my Gma ALL the time with people. I tend to relate what I do to a mother with a child who shares everything her child does with anyone who will listen! LOL Gma is by no means a child, but it's a pretty similar situation sometimes.

I just appreciate all the support and people who are willing to listen to me go on and on about Gma, her disease, her ups & downs and everything that goes with it. Last night is a prime example. I went to visit a friend and ended up talking about my Gma to her & her mom for a couple hours. The other thing I have learned though is, while I'm not an expert on dementia, I do research things ALOT (anyone who knows me, knows I love my computer and my research :D) and I feel like God put me in this position/situation not just to care for my Gma, but to hopefully help others who are in the same situation who may not know where to turn for help. I usually carry around the business cards of all the folks who have helped us over the last 3 years so I can pass their names on to caregivers who just feel lost, much like I felt a couple years ago.

@ hank.
ill agree with you about the kiss of death thing but if a gal is looking for big income and a nice home they may have skewed motives anyway. i for one dont need a gold digger..

I've found many of the people who are critical have already made up their minds and all the "explaining" just falls on deaf ears. This is one of those "dirty jobs"...

(and don't get me started on the "grown man living at home with his Mother-thing"
It's the kiss of death for a single guy!)

Dittos! Though if I had it to do over again I'd fake my death, change my name and flee to another country! (Kinda like Humphrey Bogart in Dark Passage)

Kudos to ALL who've written here, I see so much of myself in what was said, and now that my mom is now "at rest" (July 13 and my heart is still grieving the loss, everywhere I look), I'm forever grateful she will never have to experience any of the pain and misery given to her by those who cared nothing about her in the first place (sitting for 'hours' in a wheelchair while her legs became stiff and she was never able to walk again, being given foods that she hated, while the nurses acted as if it didn't matter one way or the other to them and even worse. Praise God she'll NEVER have to experience this ever again).

It's folks like you and others who give their ALL and ALL in spite of the circumstances, and for that you deserve more money, awards, etc. than can ever be bestowed upon you. I've come to learn that it doesn't matter what anyone (and that includes the lying devil too) says, thinks, etc. about the way I cared for "the only mom I ever had", I did the best I could with what God handed to me and that's all that matters. I look forward to seeing my mom and other family members again, in their brand new bodies (it's a Christian thing here) where pain, sickness, death, etc. will NEVER touch them again.

Hold your heads up high, keep doing what you can to help, tune out the negativity, and let God handle ALL the rest. You're in my prayers (for real). Take care, you're appreciated MORE than you'll ever realize. Blessings to you all.

I think insults and judgments come to us from the ignorance of those who simply do not care, much less understand the overwhelming needs of a booming demographic of aging people.

Not everyone is cut out to be a caregiver, and the ones who are not cut out to be caregivers should take EXTRA precaution to understand those who are because in the end, SOMEBODY has to do it!

As a caregiver myself for over 15 years, not only working as a paid one but also being one to immediate family, it is extremely disheartening when you are accused of being "dependent upon everyone" because you don't make a lot of money. This article hits home to many who struggle everyday to be understood in a world that venerates high paying, high profile, popular people who actually are more corrupt than they are noble,

Thank God for this article. You've nailed some of my own confused thoughts dead on.

I'm too tired to write much, but to anyone who ever wants to judge me too harshly, come live my life, with my mom, with her many, many issues, and all of the pain, and confusion, and sadness, and guilt and all the damn crap we in this care taking position flay ourselves with every damn day in our own tired, exhausted minds, come live this, all of this that is alzheimers and dementia and every body that deals, to those who would judge too harshly need to come and get some.....take my place just for one week...PLEASE...before you throw too big a stone.... I send you the best of karma and strength. You'll need it. And bring some tissues and happy pills alone for the ride, too, while you're at it. Come well armed if you want to get a taste of what my world is really like.. . lol Care givers sacrifice...more than anyone should be asked to, and nobody seems to know that, but at least we get it here, thank God.

G'night....sleep is calling

I would like to point out a common situation in conjunction with this topic. Most caregivers need a backup plan for future care needs, or in the a possible case of themselves getting ill or their own need of medical attention. So along with daily care needs being met, they have to find resources and navigate and negotiate through a maze of "what if's" and prepare for anything that may cause a crisis situation, have to with no choice worry about all of this as well, and just do it all (usually alone) however possible or impossible. This adds another job to the long list of duties, that, most non- caregivers have no idea or think about, any of these issues, nor do they understand unless they get involved themselves. I have also witnessed myself and from knowing and communicating with other caregivers, that this should be considered a fact ... that the people who do not cooperate or even extend a simple thank you, are usually the people who run when the situation is critical, but when everything is in order due to the caregivers efforts the runners come back like your nearing the finish line and complain about why the caregiver did this or that. Then...these people are the same ones that are making more work for the caregiver and instead of helping through the hard times, come out of nowhere and expect you to love the insults they dish-out and then wonder why you get so angry. I often wonder if this is guilt or pure ignorance or stupidity or just plain heartless. I know one thing... all I ever asked for was cooperation, understanding and two words "Thank You" . I also figured out that "Actions speak Louder than Words ...for sure!"