Thirty Percent of Caregivers Die Before The People They Care For Do

My friend's Mother was caring for her father with cancer. The Mother ended up dropping dead in the back yard from a heart attack first. She was hanging up clothes. Than was friend who was only 21 at the time took over her Father's care.
Father ended up dying 4 weeks after Mother's dropped dead. I really believe this article.

KatieKay, I also worry about how things are going to turn out for my parents and what my life is going to eventually be reduced to, too.... I worry so much about the future, and all the what ifs that might happen. The list goes on and on.

I did seek out therapy because I was frustrated that my parents decided to still live in their single family home [they are in their 90's] instead of moving to a retirement village to be with people of their own generation. My therapist told me to keep reminding myself that my parents made THEIR choice, that I didn't make it for them, thus my parents have to live with THEIR choice. If their choice means no transportation, well too bad, I can't keep stopping what I am doing to drive them all over hill and dale, I had to set boundaries.

But I still worry myself into a frenzy, and when I see my parent's number on my caller ID I panic that something has happened. I really believe that my breast cancer was from this stupid stress, because there were any other triggers. It was caught very early, but I still worry what would my parent do if I wasn't around any more. I thought back when I turned 65 and thinking of retirement it was suppose to be fun. Really now, I think it is a myth.

I think it is just a decision that has to be made on a case by case basis. There are excellent nursing homes out there. There are also many that are not so great..Most fall somewhere in between at varying levels. In our area, even when my Mama was in rehab, they let her bathing slide, didn't worry whether she ate her meals or not, if she said she wasn't hungry or thirsty they just assumed she was not (Mama always says she is not hungry but I know different). I was spending all my time running back and forth to rehab. I was quite honestly relieved to be able to bring her home and care for her as I felt like I was doing it anyway, only adding constant travel to the mix.

I love taking care of Mama and am fortunate that I enjoy a lot of things that don't require travel...writing, yardwork, fixing things around the house, creating little projects...and a lot of them go unfinished for a while and all of them require constant checking on Mama who is totally bedfast now, but even so for me, just easier for me to care for her here. What finally dawned on me was that while she is napping, I can take a 15 minute walk around the block here and there just as easily as I can do my little 15 minute yard work efforts, laundry, etc. . Mama always stressed to me as a child that folks can be about as happy as they choose to be and so I am reminding myself of that a lot these days. And remembering all the times Mama gave up her dreams for me....I'm tired, but for me home is where she needs to be....but I do know that it is imperative that we take care of ourselves and find ways to do things for ourselves so we will be able to be there for them.

A person that requires 24 hour care, needs to be in a nursing facility. My 69 YO sister spent 5 years being at Mother's beckon call. I told her repeatedly, not to do it. There were constant phone calls, constant questions about where she was, complaints about the food, etc. My sister was on full disability from RA and is gone. Mother, on the other hand is healthy and happy at the NH.

I realized how I have let my life slide away when this week, after finally getting a cousin to sit with my Mama for a couple of hours...a COUPLE....I got to go to Walmart for more than a ten minute "run"...I felt like I was going on an exotic vacation...a two hour Walmart visit...whoa......I can remember when I despised going to big box stores and yet here I was, getting to go "out" and not have to worry for more than 30 minutes and felt like I was going on a vacation....I see that I have really let myself get into a rut and I know Mama does not want this for me. Again, I want to be here for her...but I am going to also find a way to get sitters more often and get out and do a few more things just to maintain some normalcy and that will make me better for her when I get back home. I don't know why I feel so guilty when I do leave, even when I am only gone for five and ten minutes...I guess I came so close to losing her, and feel so blessed that we did not...but even the little trips out are helping...and it's a start...baby steps...

This whole thread scares me.

I woke last night feeling like I was about to have an anxiety attack... and that never happened to me before. I worry about how things are going to turn out for my parents and what my life is going to eventually be reduced to....24/7.

No one understands at all except you guys.

Any advice on how to reduce anxiety? Does therapy help for caregivers?

I was at the breaking point three years ago. The final straw was an emegency room visit where mother in pain was not admitted. She had to come home by ambulance. That afternoon, I found a doctor who figured out she had bursitis and gave her a shot. He pulled me aside and told me point blank, I needed to put my mother into AL ASAP.

Within 24 hours, my mother was placed and still lives in the same home. Two months ago, after the third unneccesary trip to the ER, I came to another cross road. I point-blank asked what was the next step--nursing home or hospice care. It was decided that she would remain in AL and receive comfort care Hospice at age 96.

I lived at the drug store and big box store buying supplies twice a week for three years. It was killing me. Mother is in good hands in a familiar place. She cannot hold a conversation, just asks the same questions over and over and over. Cannot remember that I just answered the question five minutes ago.

I realize that this is not my mother anymore. So, I still visit twice a week, but without all the hassle of getting supplies. She has a very strong heart, but is almost blind from macular degernation, is almost deaf, suffers from spinal stenosis. She is receiving good care from loving people. I am finally allowed to live my life and enjoy my husband of 20 years. I will retire in 31 weeks or 155 working days. I would not have made it if I had not been guided by the doctors, her home healthcare nurse, and this website.

Sadly I agree and have seen this first hand with my neighbors. My grandfather whom Im caring for now, did not die before my grandmother, even tho he took care of her. I haven't been to the Dr's in a long time for my own reasons as well., but I will be making an appt soon! I wish the best for everyone here and thank you for sharing Carol.

Keep up that attitude! We all need to learn. It's hard to figure out how but it's so very important. We have to take care of ourselves. Your momma would want you, too!
Carol

Wow, this is incredible...Not surprising, sadly. I know I have decided that if I don't start making a very proactive effort towards getting myself back "together" I am definitely not going to have to worry about later. In two and a half years I have gone from being a fit, together, emotionally sound pleasant human, to being overweight, chronically in pain in parts of my body that I didn't even know I had parts in...I am quick to snap, and when I look in the mirror sometimes I think I just have a crabby look about me in general....I am not that kind of person but somehow have now become that person and I don't like it...Being here caring for my Mama is a blessing but I have GOT to get my act together if for one, I am going to be able to continue taking good care of Mama, but also if I want, or hope to have a chance at adventure later. I'm not sure how I'm going to do it, but I'm going to do it.

To all who have been interested in the question of caregivers and early death I recommend that you read CHRONIC STRESS CAN STEAL YEARS FROM CAREGIVERS' LIFETIMES on the Ohio State University website. The information is from a joint study involving the NIH. I'll be writing about it on my blog, but you may want to check it out for yourself on the Ohio State site. They conclude that long-term caregiving can take up to eight years off of the caregiver's life. Naturally, we need to look at this and all studies as just that - information that is taken from a select group of people. The point that interests me and always has isn't that we should quite being caregivers, but that we need to take better care of ourselves - without apologies!

Blessings to you all,
Carol

I know if I keep going like this I will not live as long as my mother has lived. I know that I can't take care of anyone unless I take care of me first. I have a mother who wants me at her beck and call. She complains about everyone else and how they do for her. I finally told her today, that I have to have one day off a week from her. She didn't like it. But I plan on leaving her with a care taker every Wed for 8 hrs if I can find the right person. I have give up finding daily help as that is costly unless you have medicaid but one day a week I can afford that.

You are welcome, Givingback. Makes us think, doesn't it?

Thank you so much Carol!

Hi Givingback,
I heard about the 30% figure from the Alzheimer's Association during an event I attended. They lost track of the article so I never did see that citation, but I believe that it likely concentrated on Alzheimer's caregivers as well. Likely I should specify that these numbers are there for Alzheimer's caregivers, however caregivers of all types are under enormous stress, so while the number may not be as high as it is for Alzheimer's caregivers, I would say that it's not an insignificant number. The NIH site gives a lower but still significant number on the mortality rate of caregivers - http://www.ncbi.nlm.nih.gov/pubmed/10605972
"RESULTS: After 4 years of follow-up, 103 participants (12.6%) died. After adjusting for sociodemographic factors, prevalent disease, and subclinical cardiovascular disease, participants who were providing care and experiencing caregiver strain had mortality risks that were 63% higher than noncaregiving controls."
Take care,
Carol

Carol,
Could you let me know the original article you referred to when you mentioned the 30% mortality rate or where I might find it? The more current article you posted with the 40% figure refers to Alzheimer's caregivers. I would like to know more about the original article you posted. Thank you.

I wonder if there is anything that will help them sleep better, so we as caregivers can get a good night's sleep.
My 91-year-old mother called out for me starting at 4:30am, then every 30 to 45 minutes, so I get up to see if she needs to use the bathroom..only one time was for toile ting, the rest were miscellaneous, like, " are you up yet.", "are you alright.", or comments that must have been due to dreams she was having.
I give her 3mg of melatonin to help her sleep. I take it too sometimes. But it is getting harder and harder to get back to sleep when she has one of those nights of calling out for me. I sleep on the living room couch, she in her bed. She is hard of hearing so I can't just answer her without getting up and going to her room.
Any ideas or sharing of thoughts on how to get a good night of sleep would be welcome! I am trying to keep my job, have gone to part time to be able to take care of her, no help from sibling out of town, take her to adult day care for 3 partial days each week, since she doesn't like to get moving too fast in the morning (neither do I, for many reasons), and she can't afford help in house (not to mention bad experiences with 4 'screened' home aides).
Thank you for any thoughts on getting a good night of sleep."

Hi Aisling,
I think you've got something there about the accumulated sleep debt. That and chronic stress. Both are horribly hard on our bodies and nearly routine for family caregivers.

I'm not sure why some people like your mom have really good immune systems but I know that it happens like that sometimes. It will be interesting to read what others think.
Warm wishes,
Carol

Now it's 40%? Since I have no other option than to take care of mom, who has dementia but not Alzheimer, at home, being outlived by her is one of my greatest fear. She is very healthy. Sure, she can't remember what's for dinner or how she threw a temper tantrum the night before, but her heart is beating nice and strong. She didn't even catch a cold when I got down with one, that I think comes around more often and takes longer to go away. Right now my biggest problem is accumulated sleep debt. She goes to the bathroom 4 or 5 times almost every night, and I have to accompany her. It makes my wish list pretty short. Just enough sleep, please? If someone is woken up during REM almost every night, how long can she survives? One thing I don't understand is how come she is not affected by those frequent wake up?

Good for you!
Carol

I was on that path until my mother needed care 24/7 and went into a nursing home. After months of screaming phone tantrums, which left me shaky, teary and totally strung out and had a mini stroke, I changed my phone number. It was either me or her. An A1 narcissist she's done all she can to ruin my life since I was a small child and I refuse to let her destroy me totally. She has wonderful care and all she needs and I've backed away.

The NH calls me for every little thing and nothing - these days the phone goes off the hook around 5 p.m. until the next morning.

I became curious enough to find newer stats - this is from Stanford U.

"For Alzheimer's and dementia patients, caregiving responsibilities can last between 10 and 15 years. During that time, caregivers often experience mental health problems such as depression, anxiety and substance abuse, along with physical health problems. Researchers have discovered that Alzheimer's caregivers have a 63 percent higher mortality rate than non-caregivers. In fact, 40 percent of Alzheimer's caregivers die from stress-related disorders before the patient dies."
http://med.stanford.edu/news_releases/2002/may/caregiver.html

I got the 30% statistic years ago and it stuck with me but I couldn't find the original source. However, if you read the article from Stanford, for Alzheimer's caregivers the rate is 40%. The main thing is that if caregivers don't pay attention to their own health, they are at a huge risk of illness, and for many, possibly death.
Take care, all!
Carol

This is something I've been feeling for quite some time. My mother has dementia and I've been caring for her for 3 years now, mostly with no support (though a little more lately). It's taking a toll on me, my health is getting worse. Thanks for bringing this up.

I would have to see these "rough statistics" and what the study entailed. Sounds like they're comparing people who care for children and elders. Would have to see the study sample. I try not to quote "statistics" unless I see the scientific data.

Yes, I agree. Breast cancer is very common, and all caregivers over a certain age should get a yearly mammogram. In addition, having sibling(s) that do not help at all with caregiving, that clearly have the time and live near their folks, in my opinion, doubles the stress levels of the sibling that is doing all of the caregiving. There is a tremendous difference between having a sibling that will help out and does her/his fair share vs. having a sibling that does literally nothing and visits their folks about three times a year on holidays, which is my situation. It makes me artery-bursting mad!

I have been married for about 40 years, and my wife has been ill most of that time, with no specific diagnosis. The last few years have been extremely tough, and she has been hospitalized several times. I retired 2 years ago, and do all the cooking, cleaning, paying the bills, etc., and basically wait on her. She can walk maybe 100 feet, and standing more than 5 minutes puts her in tears. I haven't had a problem dealing with this, but a week ago I had a major Heart attack, out of nowhere. I'm recovering, with full capabilities, but fear I may die before her, and don't know how to advise her. She is 66 and I am 68. We live strictly on Social Security. No family or friends. Our living expenses are not high, so she could afford to stay alone, but how do I set something up?
Confused and hoping for suggestions.

KarlaElisa, I can certainly understand why you say that your life isn't worth living. YOU NEED TO CHANGE THIS SITUATION. Why isn't your ingrate and abusive mother in a nursing home? Don't abandon her, but care for her someplace other than where you live. Be her advocate. You'll still spend time on the phone trying to straighten her messes out, but not having the 24 hour responsibility will do wonders for your stress level.

Your life is every bit as valuable as your mother's. Please don't sacrifice it.

totally see this happening to me. 2 years of my mother and my acid reflux is back. i vomit for days. can't eat. there's blood in my stool. probably the bleeding ulcer. i have panic attacks. i have no life. my marriage was destroyed because of the stress of me caring for both the MIL and my mom and trying to juggle a 5 acre organic hobby farm i'd been building that was just starting to turn a profit...lost it all. now i live with my mom and it's worse yet. her cancer has returned. both kidneys are renal failure but they put nephrostomy bags on her, which i must empty and record fluids several times a day. she also has alcohol induced dementia. the medical community seems to want to cut me out of the decision making loop, but fully expects me to be the 24/7 'there to do it all' person. get her to impromptu appointments with no advance notification. fill her scripts. cook her meals. manage the lame ass in home health care staff as if having a small fleet of people i must spend 2 hours each morning on the phone with to schedule them coming by lest i not be here and my mom turns them away.

i caught some bug her last stay in the hospital. that was 3 weeks ago. so i lost my ability to even be able to take my dog for power walks in the park...the one thing i'd managed to hang on to.

this isn't a life worth living. my mom is 78 with the laziest cancer EVER. stage 2, grade 1 endometrial. our house has this horrible smell. she clogs the toilet with maxi pads moments after i tell her to NOT DO THAT. it's hard to tell if she's just that out of it or she isn't just trying to destroy me.

and she's an ingrate and verbally abusive. she has some weird stealing thing where she either takes my stuff and hides it or breaks it and just says "oh, i touched this and it broke". never says she's sorry about anything. never says 'thank you'.

i too spend as much time as i can in bed...not that she won't haul me out at 1am, 3am...when ever she feels like it to announce she's done something else.

i can totally see her outliving me. my body is literally crumbling.

ToDieCaring, your situation is very challenging. My heart goes out to you.

Your parents have only been in AL a few weeks. Now is the time to set some boundaries on what you will and will not do for them, how often you will visit, etc. No one can take advantage of you without your permission (to quote Dear Abby) and you have to stop granting that permission. They won't let a paid staff member provide the help they need? Why should they, if they are more comfortable with you and you are willing to do it? Make it clear, kindly but firmly, that you are not able to do what others are being paid to do. This is perfectly justifiable even if you were a single woman with tons of leisure time. But you have another loved one to consider, and you do not have plenty of leisure time, to say nothing of emotional energy.

It seems to me that your main focus now needs to be on your husband, your financial situation, and your own emotional needs. Is your husband eligible for disability benefits? Is he on Medicaid yet? Just researching the help options available to you is extremely time-consuming. You do not have the time or the psychic energy to be providing care for your parents that is readily available to them where they live. Continue to love them and visit them and be an advocate for them, but please extract yourself from caregiving tasks for them.

Best wishes to your husband. May you find the strength to take this difficult journey with him, and to mind your own health as well.

A few years ago my sisters and I encouraged my parents to move to my area where they could get more attention from one of their children and grandchildren (me and my three kids). It has been a real fight and struggle to get them to accept and pay for the help they need with assisted living and other forms of care (they have the finances to pay for the best care, just have a really hard time letting go of the money to do it). Consequently I have done much of what they should have and still should be paying a caregiver to do. As they have aged from 86 to now both 90 and in declining health, I have taken over more and more of the burden DESPITE the fact that they are in an assisted living facility....finally. They have only been there a couple of weeks but my father has already been in the hospital and mom is accepting less and less of the care they provide (and pay for). I want to mention that mom moved into the assisted living apartment only after three months of being in and out of the hospital and nursing homes and after we came very close to loosing her. Now that she is healing and much better, she doesn't want the help that we all know will help keep her out of that same situation again, keep her healthier longer and give her better quality of life. If dealing with two very stubborn and independent elderly and sickly parents isn't enough, my husband has been dealing with cirrhosis that was diagnosed over a year ago and is now in the process of getting on a transplant list. It is very depressing and stressful watching all of these very important people in my life, in declining health and trying but not being able to do much about it. I have always been the caregiver in my family, which was a wonderful roll as I was raising my three children. Now that it's a different kind of care giving I find myself depressed, anxious, worried and in turmoil most of time. My husband has been the breadwinner in our family and now that he is not working we are struggling, trying to figure out how we are going to manage our finances and how we can downsize and live off of the meager income we will have coming in. For me to go to work full time will not provide enough to pay the bills as they are now, and as his primary caregiver I can not really afford to be away from him full time...especially when he is waiting for a liver and needs to travel at a moments notice and will need me there with him 200 miles away at the transplant center. I did a search online because I had heard that a large percentage of caregivers pass away before the one they care for.....30% according to this website. Since I care for 3 people, that greatly lowers my odds for making it out of this alive. Not sure what to do at this point, but I contemplate "just driving away" all the time.....