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Subscribe to RSSAmericans are living longer than ever before, which means baby boomers are doing double duty caring for both parents and children. NBC's Dr. Nancy Snyderman reports.
Each morning, 48-year-old Troy Prater starts his day by getting breakfast for his teenage triplets. On weekdays he checks homework and then hurries them off to school. Then it’s back home to take care of his mom, Ella, who suffers from Alzheimer’s disease. Life, Prater says, “is organized chaos.”
Prater is among the millions of Americans who have stepped up to do the right thing and take care of family members who can’t take care of themselves. Unfortunately, most caregivers are spread so thin that they don’t have time to take care of their own needs, NBC's Dr. Nancy Snyderman reports.
“Caregivers don’t go to the dentist; they don’t get mammograms or annual checkups,” says Melissa Gartenberg Livney, a clinical
psychologist with the PENN Memory Center at the Perelman School of Medicine at the University of Pennsylvania. “So they get sick.”
Even worse, Livney says, “there’s some evidence that this kind of stress can contribute to the onset of dementia" which is why she and others are trying to encourage caregivers to get help, to find ways to take breaks, and to make and keep their own doctors’ appointments.
A single father and sole caregiver to his mother suffering from Alzheimer's, Troy Prater is one of a growing number of caregivers providing care to two generations.
How many people have stepped up to take care of a family member?
One survey found that nearly one third of American households had someone serving as an unpaid family caregiver. That adds up to almost 40 million households with a caregiver present, according to the 2009 survey conducted by the National Alliance for Caregiving in conjunction with the AARP.
Many of those caregivers are dealing with Alzheimer’s, which Livney says can be incredibly stressful.
"Alzheimer's disease is 10 or 15 years of slow and steady loss of the person you once knew," she says. "Caregivers often suffer in silence and feel guilty when they don't feel up to the work."
Currently, there are 5 million Americans who have been diagnosed with the disease, says Beth Kallmyer, vice president of constituent services at the Alzheimer’s Association. “And we estimate that there are 15 million people caring for them.”
Unfortunately, the number of Alzheimer's patients is growing. The Alzheimer’s Association estimates that there will be 16 million Americans with the disease by mid-century if nothing changes. And that means there will be even more of us taking care of spouses and parents suffering from dementia.
Prater, who juggles caregiving along with his normal responsibilities as a dad, acknowledges the dual roles can be very taxing.
“I’m running on adrenaline,” he says. “I’ve lost quite a few pounds.”
What's the answer to getting caregivers to care for themselves?
People like Prater need to ask for help, Kallmyer says. But most seem to feel that caregiving is something they need to do on their own. And that's a setup for disaster, she says.
“When you’re taking care of someone over a period of time, you can’t just soldier on,” Kallmyer says. “At some point your health will be impacted and that will keep you from being the best caregiver you can be. We often ask people, ‘If you get sick and land in the hospital then what is going to happen?’”
Kallmyer suspects that the urge to go it alone is part of the American character. She’d like to see that change.
So would Livney.
"[Caregivers] need to allow themselves to not be perfect," she says.
They also need to learn to look after their own needs.
“People need to give themselves permission to take care of themselves,” says Livney. “That’s what we focus on. We don’t spend much time talking about the disease and functional aspects of caring for someone with dementia. We try to help people understand how to take care of themselves."
The Alzheimer's Association's Maria Carillo describes the difficulties the disease poses not only to those who suffer from it, but to caregivers.
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There is an EXCELLENT website for caregivers, created by Dan Fogelberg's widow, Jean. It is, by far, the most beneficial support site available for caregivers of all kinds. There are no ads or fees, only authentic sharing, support, and caring. I am not affiliated with this site, I am caregiver to my elderly mom and find this to be a wonderful place to go and not feel alone. www.dontloseheart.org
Thanks for the link. I'm a 24/7 caregiver and feel we are one of the most neglected bunch around often falling through the cracks of programs and services with no choice but to go without. The money available goes first to care for my wife and child leaving me without health care, dental care etc.. with no affordable options to care for myself the future looks pretty bleak. Caregivers could really use some advocacy in regards to affordable health care access for themselves.
The first place this man needs to look for help is in his own house. Teenagers are perfectly capable of getting their own breakfast, and it really isn't too much to ask for these three to take some responsibility, not just for their own needs but also for their elders'. It would do wonders for their growth as human beings as well as making life easier for their father. I think we forget how much children need to feel like contributors in their families.
I agree - but please consider how difficult it is for a teenager to watch their mother decline at a rate they can't stop. Changing your schedule is the first trigger in realizing something is very wrong. Maybe he's trying to provide some sense of stability for his kids, even though they are capable of doing it. Maybe it brings him comfort.
If you are caring for a spouse or partner, please go to www.wellspouse.org, the only non-profit that supports ONLY those caring for a spouse/partner. When one is sick, two need help. There's an online forum as well as contacts for support groups in your location!
Good caregivers always put others first. It's the basic nature that makes them such if they are any good. Hopefully there will likewise be someone there for them if they need it. In their later years I have seen cases where yes, there were, and also no there were not. In either case, it is done by them as a selfless act.
My wife has Parkinson's Disease and dementia. She is 64 and physically healthy. She needs help 24-7. I'm it. We could never afford mursing care for her, so my job is to keep our lives from disintegrating. No one else is going to do this. I'm fighting for my life as well as hers.
Thumbs up Tony! As someone who has cared for an Alzheimer's sufferer, my mom, and a father of 3 girls, I know what you are going through (My Mom died last March). You sir, represent what makes America great.
The reason caregivers don't take care of themselves is because we are TOO busy!!!! I work full time, take care of hubs with Alzheimer's at age 48, run the household and attend my 2 busy teens sporting events and try to be there for them. When is there time for yourself?? Oh how I wish there was more support and help for caregivers!
As long as you don't whittle away caring for everyone else, then you keep doing what you are doing! Remember, you are also an important person and your health, sanity, and well being matters too.
This story brought tears to my eyes! I'm currently working full time, taking care of my family and taking care of my mother that has been recently diagnosed with vascular dementia. Some days it is overwhelming! This story came on at the perfect time! And thanks dnta^^^ I am definitely going to check that site out.
Stephpilg9,
Remember that you HAVE to come first, not last. Your health, both mentally and physcially, HAS to come before anyone else's. It's hard for us to remember that we are not superhuman and we'll always put off things, thinking that we'll do it later, "mom has to come first."
But if we don't take care of ourselves FIRST, we're not able to take care of others.
I found that out the hard way.
Hi to all of you.It is easy to say,come first.If some body needed your help,he or she did come first.While care-giving we do not have a time for our self.While care-giving i got so sick,and I did not pay an attention.Every body else did come first.In a hospital's I got a Chlamidia, an Ecoli, a Helico bacter,I did not have time to take care about my self till 2011 ----10 years.It it destroy my health.My stomach,my muscles,I can't work any more,I had to move out of country.Caregivers be carefull.Take care about you to.God bless all of you for ho you are,and MERRY CHRISTMAS. DEINA
I would like to send some Christmas money to Tony Prater.....not that money is the answer to all problems but perhaps it could help with a few non-necessities that might put a smile on his over-stressed face. Please, if there is any way to respond to my email with a manner to donate, I would be most grateful.
there is no need to send funds to this man he gets almost 900.00 dollars a month from his wife that he kicked out (he is not an single father) he does not have to grt triplets ready for school because they are not triplets (the girl is the child of him and his wife) he has a sister who can help him take care of his mother its not something that he has to do on his on its something that he does by choice so amy stress that he goes thru does not come from taking care of his mother
Angelica, I try hard to be civil on Newsvine but you might just possibly be the most insensitive asshat I've come across in a long, long time. I'd say that you should be ashamed of yourself but shame requires a sense of humanity and it's clear you lost that somewhere along the way.
Not only was that insensitive but even if this is true, he has 3 kids that need caring for. If he has a sister that could help and is nearby then she should step up to the plate without being asked. If he kicked his wife out as you say then he is still a single father and maybe he had a good reason to do that. I know from experience, taking care of my son with brain cancer, grandmother who was just in failing health, and my Mother who has been diagnosed with stage 3c breast cancer that alot of people just leave you high and dry in your time of need for stupid things. Like I have a blog that I write on and I vent about my issues like having .10 cents in my bank account since October and having to be the only one in my family to financially help keep my mother and son alive because everyone has no money. I am not rich either but every cent I get pays bills like rent, electric, and medical. Nothing left at the end of the day is so stressful that I am not doubting that people like me get sick and at an early age because we step up when no one else is willing.
I took my mom home with me from a nursing home where she was NOT doing well at all....she lived with me for 7 years, and I cherish and am grateful for that time with her. She had alzheimer's and some physical problems too, and tho I still worked full time from home, I rarely got a chance to really take care of myself. I was diagnosed with PTSD after my mom died, I was exhausted and completely depleted. She's been gone 6 years now....please fellow caregivers, get some help, you have no idea how the effects of the stress, long hours, being endlessly patient, and sorrow can take their toll on you.
I am a caregiver to both my 42 y/o disabled son and my 84 y/o old Dad with Parkinson's Disease. Some days are fine - Dad lives in the flat below me and is fairly independent since Mom died 8 years ago. He has recently had a few problems with his prostate - he had cancer 12 years ago and has had some scar growth that closed off his urethra and he now has a suprapubic tube below his naval. And he is losing his once sharp mind, with each medical procedure. My son is a 6 foot tall, 170 pound, two y/o old mentally, totally incontinent, epileptic who was damaged at age 18 months, in 1972 by the DPT booster (and yes, they admitted that with the Immunization Recovery Act in 1980). He does not talk, he needs full care (bathing, dressing, meds) every day. I have lost several jobs over the years because I cannot work full time and part time, it seems means weekends which I cannot work. And sometimes the transit van is not on time, so I lose another.
That all being said, I do try very hard to take care of myself. High Cholesterol and blood pressure runs in the family as does diabetes and I have all blood work done as often as my Badger Care Plus healthcare will allow. My teeth are falling apart from Menopause and, hopefully, I can try to get some dental work done with my income tax return (oh, I am paid through the county and Medicare to take full time care of my son - no help for Dad, though, he gets $50 more SS than the level needed to get any state, local or charity help - he does get $75 in Food stamps/share) this year...
Every year, I impose upon my daughter to take care of both of them for ten days while I go down to New Orleans for Mardi Gras and party my butt off. A dear old friend lives there and keeps me slightly drunk and protected while I thoroughly relax and watch parades, people and the revelry... You MUST take some time for yourself!!! Time when you have NO responsibilities and NO duties. I take the train from Chicago to New Orleans to cleanse and relax and then take it back to decompress in order to be ready to take over my work again. It takes me two weeks of hard work to get everyone ready for me to go away and another two weeks when I get back to catch everything up, BUT it is seriously worth it!!!!
Time for a group? No. I do rant sometimes on Facebook about the crap going on in this state. I weave seed beads and make beautiful jewelry as a hobby when everyone is asleep. I am up before dawn in the winter and I try, but do not always succeed, to catch a nap between dealing with Dad during the mornings and getting my son back from his day program/workshop. I have outlets. You need outlets, even if you never get enough sleep, you must have outlets..
I can so relate to your post. My mom is 91 and has dementia. Physically she is in good shape, but she thinks it's 50 years ago, and things are very confusing for her. She lives with us and follows me around like a lost puppy. If I leave for a doctor's appt, she is very upset by the time I get back.
Our daughter is 31 y/o and total care also. She has a chromosome anomaly, and had further problems from a hospital acquired infection that caused respiratory failure five years ago. She can walk with a walker, but needs close supervision for falls; she is non-verbal and mainly uses a wheelchair. She breathes thru a trach, is fed thru a feeding tube, has a colostomy and urostomy, which needs to be drained every 3 hours. We have help during the week for our daughter, none for my mom. My brothers live at a distance and have each seen her twice in 4 years. (fortunately our daughter is petite - 5'4, 120lb) She also has epilepsy, but her seizures are infrequent.
We tried to take a family vacation to Hawaii last year. My mom's dementia was about 10 times worse, and our daughter spent half the time in the ICU with pneumonia. I am the only one that knows my daughter's medical history, so nobody else will do doctor visits, hospital admits, medication schedules, etc, without my participation. And I'm the only that is able to calm my mother when she becomes agitated. So it's pretty much 24/7 right now. But I think about the fact that our daughter wasn't expected to survive past infancy, and it probably won't be long before my mother doesn't know me, and I think we're at an ok place right now.
My prayers are with everyone sharing their stories here tonight. I urge everyone that are taking care of their loved ones to seek financial assistance through Medicaid, the VA if your loved one's spouse served, and also community non-profits that offers respite care.
Medicaid does pay for Nursing Home Care and even some home health cares services even though they may be living with you. They need to have little or no personal assets - but may still be able to own their home and have a car in their name.
If you don't know which way to turn, find a local elder care attorney to point you in the right direction for financial help. They specialize in Medicaid and VA assistance. Some offer pro-bono (SP) services for those that can't afford the fees.
The reason I'm focusing on finances is that even a few hours a day assistance would make a hug difference in your life. Everyone needs downtime and there are some very qualified services that do wonderful work with Elder care.
Remember, most companies that provide care hire caregivers that are trained specifically for the type of care you are providing. From bathing, to dressing, and everything else.
For people who can afford Assisted Living (VA can also provide some funds to go for Assisted Living) Shop around. For Alzheimer care - you want to find a place that offers "Memory Care". Many Assisted Living facilities offer Memory Care services as well.
It's important to visit more than one and speak to as many directors of the facilities as you can, some specialize on those that need more care and are more advanced, while others may focus on less advanced residence. It varies GREATLY - not all are the same.
Also shop around in nearby towns with a comfortable driving distance. When we looked for a new place for my mom, she moved from an Independent Living Apartment to a full service Memory Care facility that provides everything for the same price. This distance is still within a close enough drive so that our family can visit her often.
I hope this information helps.
Sometimes there are special places to go for help, sometimes not.
Those who are too young for Medicare can find it especially challenging, because on top of everything else, there is a lot of red tape and still state and local taxes on disability. COBRA benefits are too expensive to afford. My husband has cancer, and he is still working because that is the only way for him to have medical insurance.
I am so guilty of not taking care of myself. One full time, one part time and two more on the way who are somewhat of responsibility. As my mother gets older it's going to graduate slowly to four people. None of them want to necessarily co-operate with what should be happening. Stress is an understatement. You get to where you start thinking things like, do I have to die in order to have my life ? Then you get counselors that want to suggest things like do something for yourself. With what ? Then when you do, you're being selfish. Yes, it's a life isn't it ?
The multitude of reasons to melt your cheese on your cracker. The sky fairy is not my friend. Oh, yes he is.
all brave loving souls on this vine.
Please consider reading my Pulitzer-nominated book that has helped tens of thousands of caregivers, loved ones, and patients -- "Caregiving: The Spiritual Journey of Love, Loss, and Renewal" (John Wiley & Sons) - Beth Witrogen (McLeod)
Please consider reading my Pulitzer Nominated book, CAREGIVING: The Spiritual Journey of Love, Loss, and Renewal - John Wiley & Sons. You will find so much information about self-care as well as all the issues we all have faced - housing, medical, financial, legal -- but most of all, the intimate relationships between family members that are the core of this midlife passage. Thank you - Beth Witrogen (McLeod) www.witrogen.com
Thank you for raising awareness about the impact of caregiving on family members, and the need for self care. It's been my privilege to be a geriatric social worker for the past 30 years, and to work with an international not-for-profit, The Eden Alternative, which is striving to improve the culture of care for family care
partners and Elders.
One of the things that adds to caregiver stress is our image of "ideal care," meaning care provided by family members alone. Even the language in this article gives away the larger culture in which we all live: family members are seen as "stepping up" when they provide care at home, even if it kills them.
A new model of care partnering, which perceives the needs of caregivers and care receivers alike as vital and interdependent, is one step in this direction. Another is to recognize that it's not realistic to imagine that every person can (or should) provide care alone; some Elders will need residential care, all will need an empowered, collaborative care team no matter where they live.
We need to change the conversation about this so we don't inadvertently blame or shame families who need help with caregiving. Thanks again for your article.
(For more on The Eden Alternative, please visit www.edenalt.org)
Caregivers need to take care of themselves. Tell me something new. Sleep is essential, but sometimes it doesn't happen. Eating healthy is essential, but sometimes it doesn't happen. Get regular checkups. Great idea! A huge number of caregivers fall into that area where they have had to leave work to be the caregiver, so have no health insurance and are too young to be on Medicare. And most, if not all family caregivers are unpaid. So how is this supposed to work?
I have been doing elder care for my parents for the past 12 years, for the last 5 exclusively for my Dad. I would love to be able to go a health club 3 times a week and work out. I would love 'me' time. I wish I had an extra $300 to see the doctor. The time I spend away from caregiving is spent taking care of my own family. Most states with resources are stretched beyond thin. I am lucky. I have my own immediate family who supports me and helps me take a break from time to time. I am lucky.
No one can ever know the level of compassion, concern and stress, that caregivers go through. Mere words cannot fully express the range of emotions that pull you in so many ways while caring for a severely handicapped person, especially a loved one. There simply is no rest.
There's another reason why caregivers don't go take care of themselves, after all, what good is a mammogram if you can't afford follow-up care? who's going to take care of your family member while you're laid up in the hospital?
Thank you for raising awareness about the impact of caregiving on family members, and the need for self care. It's been my privilege to be a geriatric social worker for the past 30 years, and to work with an international not-for-profit, The Eden Alternative, which is striving to improve the culture of care for family care
partners and Elders.
One of the things that adds to stress is our image of "ideal care," meaning care provided by family members alone. Even the language in this article gives away the larger culture in which we all live: family members are
seen as "stepping up" when they provide care at home, even if it kills them.
A model of care partnering, which perceives the needs of caregivers and care receivers alike as vital and interdependent, is one step in this direction. Another is to recognize that it's not realistic to imagine that every person can (or should) provide care alone; some Elders will need residential care, all will need a collaborative care team no matter where they live.
We need to change the conversation about this so we don't inadvertently blame or shame families who need help with caregiving. Thanks again for your article. (For more on The Eden Alternative, please visit www.edenalt.org)
Having help and taking care of yourself is important but not everyone has someone available to help, is there respite care or funds to help with this
taking care of yourself is important but not everyone has someone to help, is there respite or funds to hire someone to help
this article makes it sound easy to get help, but we lost my Grandma 2 weeks ago after 19 months of taking care of her. if she hadn't saved her ENTIRE LIFE for her end-of-life care we couldn't have hired the people we did. her caretakers - at the most BASIC LEVEL - cost over $1,000 PER WEEK!!!!!!!! hardly anything was left over for an inheritance, and if she hadn't died when she did, there is ZERO CHANCE we could've kept that up for more than another couple of months. it would've been an insurance-covered nursing home with less than acceptable care. it's a crime that in this country it takes that much money to get basic care. and even with help, my Mom nearly lost her job of 30 years because of all the time she missed due to emergencies, appointments, etc. that paid caretakers simply can't do.
my Grandma died 2 weeks ago after 19 months of our taking care of her. we were the only family taking care of her (my parents & myself) and only had paid caretakers because my Grandma was wise enough to save her ENTIRE LIFE for her care at the end of her life. we spent $4,000 WEEKLY for the most basic level of in-home caretakers!!! that is CRIMINAL, that we in this country have to spend so much to have the most basic end-of-life care! if she hadn't died when she did, within two or three months she'd have gone to an insurance-covered nursing home because even with the money saved as a society figure & doctor's wife, the money was just about gone. even then, my Mom nearly lost her job of over 30 years because paid caretakers can't handle everything, so there are emergencies, appointments, etc that nearly destroyed a lot of things for our family. of course we do it because she deserved our love & care... but no matter what they say, LOVE IS NOT ALWAYS ENOUGH.
Twenty-five years ago, this problem was called by a different name.
From Wikipedia:
"Codependency is defined as a psychological condition or a relationship in which a person is controlled or manipulated by another who is affected with a pathological condition (typically narcissism or drug addiction); and in broader terms, it refers to the dependence on the needs of or control of another.[1] It also often involves placing a lower priority on one's own needs, while being excessively preoccupied with the needs of others.[2] Codependency can occur in any type of relationship, including family, work, friendship, and also romantic, peer or community relationships.[2] Codependency may also be characterized by denial, low self-esteem, excessive compliance, or control patterns.[2] Narcissists are considered to be natural magnets for the codependent."
And further related:
I'm not sure where you're coming from with this post, but there is one thing that kept me going all those years - love. Love and the unique almost impossible to define new (not completely) new relationship that developed between my mother and myself in those 7 years. I'll never forget it, and never regret it.
Mike Hu, dude, I think you posted on the wrong discussion.
This one is regarding the article about people who take care of loved ones who are physically ill, with cancer, dementia, and/or other debilitating and fatal diseases.
It seems that if you are referring to the article, that you would have the care givers kick their family members to the curb and leave them there for the Soylent green collections.
I think Mike is part of the problem. Sounds like Jack-ass farm escapee.
Been there, done that -- for both parents -- one after the other -- and am doing it now for my spouse.
Did I get worn out? yes! Exhausted and utterly worn down ... And, no I didn't take care of myself sufficiently, but I never regretted caring for my parents for one second.
And I certainly am more than willing to take care of my spouse, but I am wiser and know how to care for myself and how to ask for help.
Please, please take care of yourself and be willing to ask for and accept help. You cannot help the one you love if you don't help yourself.