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

Good for you!
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?

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

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."

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.

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

Thank you so much Carol!

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

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.

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

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.

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

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.

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.

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 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...

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 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.

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.

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.

My father was the care giver for my mon who is need of 24/7 care. He passed away suddenly. My sister and I do not have a hose that can work on "day 2". Is there any medicare options that can allow us to place her in a nursing home for a brief pariod of time until we can retrofit one of our houses for her to move in?

My father was the care giver for my mon who is need of 24/7 care. He passed away suddenly. My sister and I do not have a house that can work on "day 2". Is there any medicare options that can allow us to place her in a nursing home for a brief pariod of time until we can retrofit one of our houses for her to move in?

Well......that just made my day.

Contact area nursing homes and also your Area Agency on Aging and ask about respite housing. There may be a temporary solution for you but you'll have to dig locally.


Take care,
Carol

I am a Caregiver it is a paid position but Of course the time spent together you cant help but to Care deeply for the person you work for. I love in And it is extremely hard to ever be really comfortable in someone elses house. I have been here for 2 years now And My duties include everything.i Care For him cook clean shop yard work car work bills every single thing That gets done i do. There is no relief person no days Off And slowly but surely i seem to be getting further And further Behind in everything. I dont know if i am losing My mind or what. I cant even get the house cleaned it seems Like no matter what i do nothing is getting done someone please give me some advice i feel Like everything is just out Of control yesterday i had so much to do And i just say Down And did nothing And today the same help please!!!!

Sorry about the misspelling Phone is On spanish setting i dont know how to change it right now its just to much effort

You have too much responsibility. If the family hired you, talk with them about one day a week off at the very least. You can't be expected to be a 24/7 caregiver, with no time to regroup and do something normal. If the person who hired you is the care receiver, then talk with someone at social services and see what can be arranged.They would understand that no one can keep up with what you're doing though they may send you to a different agency.Please handle this soon - your health is at risk.
Blessings,
Carol

So true and so hard for caregivers to do. Most of the time they are just surviving as the chronicity of their loved ones illness often isolates them more as family and friends fade from the initial frenzy of an acute situation.

The last sentence is wonderful. When I was caring for my Mother and Father, what I needed most was to be heard. I often felt needy, misunderstood and sometimes ashamed of myself, until I read an article on this website about caregiver grief. The ongoing grief experienced at every setback in my parents health. I wasn't needy or lacking, there was a name for it. I could quit beating myself up for not being as good as I thought I should be. I think understanding that our feelings are normal and there are others who feel the same somehow lightens our load. I am very thankful for the support that I found from the people on this website.

Wonderful information here about putting a name to our grief and to have someone really listen to us. Both are essential to helping caregivers through the maze.
Take care, all of you,
Carol