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

I agree with this article. I get out alone to see movies, shop or read a magazine, sit in Starbucks, and other small things to "take me away" mentally. It helps. I find myself sleeping a lot. I felt guilty for a while, but everyone kept telling me to take care of myself, so I decided to start with sleep and taking my mind off things when I can. My most obvious problem is my weight gain. I eat when stressed. That is a hurdle that I need to try to get get over. This will be a challenge.

I agree also. I find myself getting sicker often b/c of the lack off sleep. When I actually have an "off day" I am either busy with laundry that has built up or something else that has gone wrong. I am only 21 and taking care of 1 terminally ill grandparent and a blind grandparent who both raised me and I try harder to make sure they are happy than taking care of myself. I don't know what to do or how to change it.

You are both stuck in areas that are difficult, but at least you are aware that you need to care of yourselves. Eating out of frustration is common and hard to avoid. I always suggest that people stop and take several deep breaths, and really think how badly they want another cookie. Then, if they really want it, eat it. You can't keep feeling deprived, either, and it's human to turn to food for comfort. If you can go online and chat (there are safe, monitored groups), that may take your mind off some of your grief and also keep your hands busy. You do need to get out, if you can, so a trip to Starbucks is a good idea. Keep remembering you are not alone. And to RCramer - what an angel you are to be caring for your grandparents, but you can't do it alone. They wouldn't want you to risk your own health for all of this care. Are you getting help from your local hospice? They will help you with your terminally ill grandparent, and the social workers will have ideas to get you other help. Please call them.

Best to you both,
Carol

I couldn't agree more with the above article. My mother-in-law took care of my husband's grandma for 3yrs until mom got diagnosed with colon cancer until May of this year. My mother-in-law since passed away in July. So now my husband and I take care of grandma. It's been hard at times. We got a private agency to come in a few hours a month to give us a break and to do the things that we used to do before we took on the responsibilty to care for grandma.

My husband is 76 and I am 55. He recently was diagnosed as having two aneurysms and had brain surgery. He was in the hospital for 14 days, rehab 7 days and then home. The home scene is what got to me, because I was being overloaded with information, new schedule at home along with caring for my husband. I found myself getting angry, controling, and the like. I called upon my family, to talk to along with asking them to sit with him while I went to the store or church. I have since found my new schedule, a new husband with new disabilities (and I am able to do things I didn't know that I knew I could do), and a peace that comes from God. I learned it is ok to be angry as long as I don't hang onto it and I must forgive my husband. He didn't do this to me. He is recovering and I am learning caregiving. I will always have help. God is with me and I have family, friends, and church. I am a very active, busy and learning person. I love this site, just can't believe how not-so-often message posting.

You are fortunate that you had family to help and that you have a deep faith. Faith that we are not alone spiritually, as well as physically, can get us through much. You have a magnificient attitude that shines all through your message. Thank you so much for sharing this. The best to you and your family this New Year.

I might add that this is a new site, so spread the word, if you enjoy it. I think we can get a good group going, with time.

Carol Bradley Bursack

Thank you for the encouraging words and affirmation! This helped a great deal to start off the new year! I found online forums, or communities years ago, and found lots of support from strangers. Yet, you have to be careful what you actually listen to, it could be bad news or advice. I first started on this community looking for support, but, instead, replied to others. I love helping others that seem in distress in the same way I have experienced it. When you have been there and done some of that, it helps to understand someone's situation. Granted, everyone's situation is greatly different, but it always helps to hear enc ouragement, and not emphasize the negativeness of the situation. God CAN lead you out of a predicament that you have been led to. He will see you through it!!!!! I have to remind myself not to give up! I will spread the word!

Wonderful! I am a true believer that those who have experienced something first hand are the best fitted to help others going through it. No two situations are identical, but there is enough in common that we can all share.

This topic of Caring for yourself, is what I don't seem to have time for, anymore. For 10 years, I was "3x caregiver", meaning, I not only cared for husband, my mom, and husband's mom, but also worked 30 hrs. per week, outside of the home. Our moms were in nursing homes, and I kept check on them. Sadly, both are now deceased, but it there still doesn't seem to be enough time for me, to care for me in a given day, due to my husband's illness. (recently diagnosed with dementia, and stage 3 alzheimers). Sometimes, I forget my own meds, but remembers to give his. Please Pray for us. brominds

I will pray for you. I know, too well, how easy it is to say that the caregiver must care for her or himself. Doing it is the problem. I didn't do it well, either. I hope you can find some repite care so you can get away, once in awhile. If you contact your state human services, they may be able to point you in the right direction. Every time I write a column mentioning our local resources, the people at SouthEast Human Services tell me their phone rings off the hook with crying people who didn't know services were available.

There is government funding. It's finding the place to call that's hard. And also, making yourself take advantage of it is hard. I always felt I needed to be there, because my elders like the way I did things best. I don't know if I'd be able to follow my own advice now, if I were to do it all over.

But I pray you will try. Maybe even someone from your church would sit with your husband while you get away, at least for an afternoon. Meanwhile - your meds are number ONE. That is something you must do. If you aren't there, who will help your husband?

I'm praying,
Carol

Thanks Carol. I appreciate these words. They truly hit home, in a blessed way. I welcome your comments, any time. brominds

Keep in touch. It's always good to "talk."
Carol

Hi Carol: How are you and family? I pray all is as relaxed as can be. AS for me, life was Agonizing, during last few days. Hubby was a bit distraught, and was furious at me, for unfounded things. His doctor increased his alzheimers meds, at my request, because he's improving, but slowly. However, don't misunderstand me,LOL.
These alzheimers patches, have brought about a positive change. brominds

I'm glad there are some possitive changes for you. You're in the middle of a tough journey, and it will be ever-changing. As for me, I've got my own struggles, of course. We all do - that is life. But, for now, dementia isn't one of them. I coped with five different types of dementia in my loved ones, so I've seen a bit of this.
Blessings to you. Keep looking for a little respite. You need it to stay healthy, yourself.
Carol

hello
i fear for my mother she losing her hubby too this and i,m tring too keep her kiving but i think giving up on this darn thing so, i,m hoping some help come along the way she so much in my love for her and she tring too keep the faith but i,m not sure any more i hope comes home soon but the nurinbg home say no hope at this time he getting bad

This is so sad. Your mother will need your support. Hopefully, her faith will help help her understand that her husband's spirit will still be with her and he will be out of pain. It will be so hard for her to let go, but you are so loving, and she will feel that. Take care of yourself, too.
Carol

I've 54 and have been the sole caregiver for my 70-year-old husband, following a stroke three and a half years ago. He is pretty mobile, but really cannot be left for more than a few hours. Yes, I force myself to get out a couple times a week...line dancing and a choral group. I retired from my job and now find it difficult to find a part-time job that I can keep for very long in this economy. I am depressed and sleep deprived. We live in this area alone (children and families are 1400 miles away), except my husband's sister and her husband live less than a mile away, but are VERY little help. I keep begging them to take responsibility at times, so maybe I can go to a two-day women's church conference out of town, but she'll say "I'll check my calendar" and then never gets back to me. She's the one that talked us into coming to this area and how much help they'd be (NOT). She is sarcastic to me and critical of my every move and word. It is possible that that is out of guilt, as she never was like that before his stroke. Then one or the other of them says things like "you can't blame your depression on us" or "if you're going to be depressed I'm not hanging around, you'll make me depressed" and within a couple minutes they are out the door and then nothing seen or heard of for weeks and THEY become the victim (yeah right). Personally, if they were MY family or non-family, I'd just write them off and not have a relationship with them LONG ago, but that's not an option since she's HIS sister, not mine. I continue to turn the other cheek over and over again, but my cheek is getting raw.... So far, I'm healthy, but recently have seen 2 or my close caregiver friends surcum to illnesses and be hospitalized. I just keep saying to myself that that's not an option....but, who knows.

I am 57 and take care of my 91 year old mother. She is legally blind, has dementia and has broken both her hips and wrist. I find myself wishing myself away. I am depressed, and sometimes frustrated. I wake up get her dressed, fed, and washed and off to a senior day care so I can get to work. I had to cut my hours at work to accommodate the hours at the day care. Then home to change her clothes, feed her, and get her to bed. As like the others on my days off is caring for Mom cleaning laundry and grocery shopping. To shop I have to get up early on my day off to complete before she wakes. My family members are very little help. They are either working or have their own plans. I feel extremely guilty writing this. I love my Mom, but feel I am spent. I pray everyday for the mental strength I need just to meet the next day. I have no time for my husband and we have only been married 7 years. My mother moved in shortly after we were married. My mother is planning to make it to her 100th birthday. I do not believe I will make it that long.

I am 34 yrs old and my husband is 45 almost 46...he suffers epilepsy and had a stroke in 09...he also has had pneumonia several times. We left Indianapolis and Move to Az for a change of pace and a better climate to improve his well being. Among my chores I also raise 2 young children...rarely can i make my husband enjoy the outside and few other things...he isn't exactly on his deathbed but he does have ornery spirit ...i just do not like being left alone and neither family caring what is going on with me or the kids or him....just sucks but I keep the faith...

I've read a couple of articles about caregivers dying before the ones they cared for do. I've looked and couldn't find age statistics. Do you know where they might be printed? Caregivers are often the same age or older than the ones they are caring for. It is hard for me to interpret the findings without knowing the ages and health conditions of the caregivers. For example, I had a 80-something year old friend who was caring for her husband, who had Alz, and a son, who was 50-years old and had Down's syndrome. She herself had a bad heart and died before them. What part the stress of caregiving had in her death is impossible to determine because of the other factors involved.

I do, however, think that it is a good idea to keep ourselves up. It is all too easy to put ourselves on the back burners with all the crises going on around us.

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.....

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.

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.

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.

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.

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 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.

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 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

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.