Caregivers have a 63% higher chance of dying due to the stress of caregiving. How are we supposed to take care of ourselves?

Bubble, my heart goes out to you. That has been my fear as our family's strokes on both sides. I ended up in hospital critically ill last January. Weird thing is I was so out of it - delirious, I didn't realize I was that sick. That is what worries me about all the caregivers here, they can be sick and not even know it until too late like you. My mom is now in AL, I don't know if she will be comIng back to my house or not if up to my friends and family that would be a big no. But i do miss her. I pray for your continued recovery. Hugs.

@bubble...I broke down and cried when I read your post! Your last two words are so profound and equally heart wrenching. "Or worse". Everyone thinks, the end result of their sacrificing will be death and that line of thinking is supported by the article that started this discussion.."63% higher chance of dying". Bubble, you are the even lessor reported, studied, 'results' of caregiving, you and I and generations of caregivers are what I call, the 'leftovers'. Two words that tell a story of a 1000 words: alone, disabled and no one to be the caretaker of the now disabled caregiver! You don't have to answer this but it is a question that haunts me: Would you do it again if you got to have a 'do over'?

my parents own the house, so I really have no say so........

I think some of this can become some of that "self-fulfilling prophesy" stuff. It helps to keep a little bit of a defiant attitude. Just my 2 cents.

Don't just hang in there a tough it out alone. Seek help for yourself first! What happens if YOU go down? Are you in their home? Or they in yours? that makes a big diff. If you can ,cut your work hours in half and only"sit" with them during the night. Then maybe they will be asleep part of the time.Your senior citizen group has many resorces and programs to help your parents.Please check it out.I want you to be good to yourself. Eat chocolate and give your mom some too. It's hard to bitch while eating chocolate.Barb

Wow, I did not know about the caregivers dying. That is scarey! I had to go to the hospital tuesday for chest pains, 3rd episode, I take care of my dad with alzehmers stage 7 and my mother who can't do anything for herself but bitch at me. I do everything for her and after this last episode I am just physically and emotionally drained. Can't even get excited for christmas.

Oh, thank God! I thought I was going to have to do this FOREVER! (sarcasm)

Just keep in mind there are some things WORSE than death.

Hi,For all of the fifteen years that my Ex was on dialysis I was his caregiver. For 12 of those years we did the dialysis at home. He was a major sun of a bithc. Yelling, screaming ,cusing. So not only was there a dialysis machine at home but every month twelve hundred pounds of medical supplies were delivered. These generated 200 lbs. of plastic and paper trash per month).And he was that way before kidney failure.But that was his personality.We did have many great times too.One morning we were getting ready to out for breakfast.I had a massive hemoragic stroke while sitting on the couch.I got to the hospital with in eight mins. and was non responsive.I was 57 years old.Four docs said stress caused my stroke.Now I am crippled. We broke up last Dec. He moved out of state and he died this June.Now I live alone and am disabled.Controll your stress by all methods available.It might kill you. Or worse.

I absolutely believe this is true! Compared to you all I've only dipped my toe in the pool so far, doing lots of long-distance action coordinating things sometimes for my mother over the last few years. Much more time on the phone with her too keeping an eye on her and supporting her emotionally. Psychologically I already feel the burden of carrying the responsibility for another human being that could increase exponentially at any time. My health has gone downhill rapidly during these years and I've developed two serious chronic conditions during this time. I fear to think what will happen to me when I have to become even more involved and hands on with caregiving especially in the same town. Not that I would dump this on my siblings, since I am an only child but I wish I had someone to share this responsibility with.

I am in awe of the caregivers who post on all the topics and the determination to care for loved ones, spouses and parents; the care receivers who are anything but easy to care for with their physical and mental issues. It is interesting to see how male caregivers (husbands) take on the job stress with such a different attitude than the women caregivers. My husband and I were in a motor vehicle accident four years ago and I was introduced to 'Caretaking 101' even though I too was injured. There was zero family help. Husband of 40 years had been verbally, emotionally and financially abusive and brought his personality into his declining mental and physical condition. I lovingly cared for him as that is who I am which my family called an 'enabler'. I was judged harshly by the absent family as not being a 'good' caretaker. My health continued to decline as my husbands need for care increased. His son finally (long story) moved him out to his area and hired a caregiver. Two weeks later, he had had enough and asked if I would take his dad back. I said 'No' but we could put him in a care facility, the son wasn't having any part of that suggestion. So, now, three months later it is a sad situation for everyone concerned because my husband is so abusive and I am no longer his 'front man' to protect the family from who he has been all these years. So, back to the topic of caregivers dying before the care receiver; I am still an emotional wreck but I am finally getting to see my doctors to address my own care needs (that were added to as a result of the accent). Bottom line: I am beyond thankful that I am no longer the caretaker of such an angry narcissistic man. So I stand in awe of each and everyone of you who stays the course, in impossible situations, with such amazing determined attitudes to do whatever it takes. There is something incredibly wrong with our 'system' and our family units that have and continue to look the other way when it concerns all you heroes out there sacrificing your lives for your loved ones.

Those percentages makes you think twice about becoming a caregiver. Does not make sense to care for an elderly when the caregiver would die shortly there afterwards. Sad world when our taxes are being spend on useless projects instead of our senior citizens.

I've never worried about the statistic. Caregiving has kept me too busy to worry about too much else.

thanks Christina and good for you!!! I taught at college for over 25 years and loved it and all the students but especially the ladies who were picking up the pieces of their lives and succeeding against great odds. I wish it did not have to be a battle but sometimes it is necessary - do I get tired of it - Oh yes, do I take breaks from it Oh yes - and i do what I have to do to get through it - I have paid my dues

I agree, emjo, about defying the odds. I am going back to college and plan to graduate within my Mother's lifetime. I will be her only child of 4 who even attended college, and the only caregiver of them all. I have a couple of semesters to go, but besides that, I would like to rub it in to my sister that even though she thinks her life is too important to help with caregiving, I am also the smart one in the family. Ooh, I am SUCH a rebel:) in the words of King Arthur, stated inimitabley by Sean Connery in "First Knight", "I command you now to Fight!! Fight! Never Surrender! Never Surrender"! That's the surviving caregiver cry. Shout it out when you are feeling weak; it will sustain you. Big Hugs.

well I guess my chances are out of sight - 63% for being a caregiver and 40% for being a bereaved parent 10 yrs after loss and I am at 9 years now

I am with you hank - cop an attitude and buck the odds - i don't intend to succumb - and I will be quite ruthless in doing what i need to, to survive - sorry folks just the way it is - my mum is narcissistic and borderline personality disorder and quite well for 99 and well cared for - but bitches, complains and demands all the time and sucks in other people to get at me and would suck the life out of me - - too bad -what they think of me is their business, not mine and they don't walk in my shoes - and I wouldn't want my worst enemy to

doing right by people means doing right by yourself too - I have seen people who are suicidal because of the impositions made on them and their families by their elders - that's living too close to the edge for me - time for change when it gets that bad - in fact before it gets that bad - I have lived with the stress all my life and it has been worse than it is now but I have learned better how to survive - 73 and still fighting to maintain my life in a balance -wish it wasn't a regular struggle but with mother's BPD the borders have to be maintained and strengthened all the time - you may find it strange but I do love my mother just I cannot let her destroy my life, which she or call it the disease - would do if allowed

not the "picture perfect" caregiver, I know,but I will see that she gets her real needs met, but for my survival it has to be at arm's length

We found that the less drugs our 90 yo mom was taking, the less stress we had taking care of her. She can still hobble to the bathroom and potty, she can still eat on her own and she still knows who we are. Had she continued to be on Lipitor, we would have big problems by now although the Lipitor did a lot of damage to her when she was taking it. I think doctors have a lot to do with contributing to caregiver stress when they prescribe drugs that make the patient SICKER. Just my opinion as a caregiver.

Probably you gotta start taking some time off for fun.

Good Lord. That is scary and terrible... 63%. I gotta start taking some mega vitamins or something to try to stay healthy!!!!!

You go, Hank!

I think some will read something like this and start to feel sorry for themselves (or sorry-ER for themselves) give up and end up making it happen.

You have to assert yourself, cop an attitude and buck the stats.

Good comment, Hank. I think the hope is that if enough people read articles like this -- not just caregivers but health care providers, employers, the general public -- they will do things to make it less likely. For example, I have been interviewed at the Mayo Clinic once a year for eight years as the caregiver of my husband who has Lewy Body Dementia. This is the first year that any questions were about me, my health, my stress levels, etc. (in addition to questions about hubby's health, behavior, cognitive skills, etc.) There is a growing recognition that the well being of the primary caregiver is an integral piece of the whole picture. The next step, and one we try to take on these discussion boards, is not just to say "get help" but to provide ideas about how to go about that.

According to an article by AARP, "Family caregivers provided the equivalent of $450 billion worth of care to their adult parents and other loved ones in 2009." Holy cow! Someone better start paying some attention to our needs. If we are incapacitated and can't continue to provide uncompensated care, where is that $450 BILLION going to come from?

What is a small fraction of that amount were used to set up affordable respite care? Wouldn't that be a good investment in minimizing the risk to the whole amount?

These kinds of articles need to filter out to policy makes, medical providers, and the general public, and not just wind up making us feel more anxious or guilty because we are doing something wrong.

Well I heard 70% at the daycare support group but this article on CNN says 63%, yikes! I think its a lesson in taking better care of ourselves but how is the question when you are housebound.

Is this really true, or is it self-fulfilling prophesy?

If I read an article like this am I more likely to do some things to make it happen?

Luvmom, you've answered your own question about what makes our stress different from typical work stress. Ours is often 24/7. A professional caregiver may work 8 hours. Even if they are very stressful hours with hard work and sad or scary things happening, there will come a time in the day when the responsibility is no longer the professional's. She will go see her kid's sports event, or have a couple of beers with the girls and go bowling, or just sit and do nothing, as the mood strikes her. I think that it is the constant responsibility that is so stressful. Even if we get away, we could be called at any moment to return or to problem - solve over the phone.

I think I would have much less stress in my life if I didn't have to support us, too. But if I didn't work we'd have to move and adjust to a drastic lifestyle change. I'll bet that would be stressful, too.

I love my hubby; you love your mom. That is the bright side, and helps offset some of the stress. Some, but apparently not enough, if you read the statistics

THank you both for writing me, I appreciate it. This CNN article says its now 63% and it scares me. So, if I have help a few hours a few times a week, thats respite and lowers the chances of myeslf getting sick? I do understand if I worry about it makes it worse but I cant ignore it either. What about nurses and fulltime caregivers who work in nursing homes, lots of people live with stress in their lives. Is this so different for us? The stress I feel is that I dont have one day off with my husband.(he is wonderful with Mom) I cannot babysit our grandchildren who are both under 2, and we cannot go out weekends unless I hire someone, and thats a lot of money. Its also stressful having caregivers in the house, oh the stories I can tell you. They are a great help, but they are still someone else in your home. I am off now, its summer and I find it easier because my caregivers comes in 3 mornings to bathe Mom for me. Its a blessing to get up and get a coffee without having to bathe someone else first, lol ! Next month I will go back to work and have my caretaker 7 hours and then I get home early and do my 7 hours plus the weekends. I am beginning to think I should quit my job and take care of mom during the week and trying to find weekend caregivers ., Even thou they will be in our house, I can get up and leave when I want to. I am spilling my mental thoughts here outloud, thanks for listening as I sit here feeding poor little momma her miralax in tea and helping her eat her muffin. God I love her!
Luvmom

Getting help - some kind of respite - is necessary. Statistics put caregiver death at 30% or higher - before the death of the care receiver! That's very sobering, indeed.
So, please take this seriously. Contact the Alzheimer's Association at www.alz.org or call your local chapter. They can be an enormous help.
Carol

Worrying makes it worse. Ignoring it makes it worse. What're we supposed to do? :)

At our family meeting a couple of weeks ago I handed out a couple of articles on caregiver stress, told our 5 kids I intended to be around and healthy to care for their dad indefinitely, but statistics indicate that they had best think about contingency plans in case something happens to me. That was a pretty sobering thought for them. I put this on our agenda on the advice of a therapist at the Mayo Clinic that treats my husband for dementia.

We can't worry about it and we can't ignore it. I guess we really do have to take care of ourselves.