Rough statistics show that 30% of caregivers die before those they are caring for. Some studies show deaths higher. Illness that doesn't lead to death is rampant, as well - depression and auto-immune diseases are high on the list. Caregivers often don't find time to go to their own doctor appointments. They put them off, because they are too busy, or are just plain sick of sitting in clinics with their loved ones. Then things like breast cancer, which could be caught at an early stage, aren't found until the illness is much worse or even life threatening.
Caregivers are as important as the people they care for. If they abuse their bodies, minds and spirits while caring for others, no one wins. Support for caregivers means we must tell our stories and know we are heard. I hope we'll hear many stories on this site.
Father ended up dying 4 weeks after Mother's dropped dead. I really believe this article.
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 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.
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?
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.
Carol
Blessings to you all,
Carol
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
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.
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."
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
Carol
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.
"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
Confused and hoping for suggestions.
Your life is every bit as valuable as your mother's. Please don't sacrifice it.
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.
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.