Caregivers come in all ages, relationships and life histories.
Many times the caregiver of an aging person is the spouse. Naturally, children or grandchildren are supporting their family members who are caregiving but the main responsibility is on the spouse.
What we are seeing more and more is that spousal caregivers are getting burned out. They have been primary caregivers for many years as chronic diseases including Alzheimer’s or other dementias have dragged on. The person who needs care may have been slowly declining in functional abilities leaving the spouse with more and more tasks to complete including personal care and maybe even transferring or lifting.
More and more, the aging caregiver may not be physically able themselves to provide this care – – and maybe they are even growing less capable of meeting their own needs.
As chronic disease care can be required for many years, the spouse is also getting older and perhaps even weaker. Frustration also builds in spousal caregivers who just can’t handle the continuous demands, both physical and mental, of caregiving.
Statistics from the Family Caregiver Alliance
- 43.5 million of adult family caregivers care for someone 50+ years of age and 14.9 million care for someone who has Alzheimer’s disease or other dementia.
- An estimated 66% of caregivers are female. Research suggests that the number of male caregivers may be increasing and will continue to do so due to a variety of social demographic factors.
- According to the survey, older caregivers are more likely to care for a spouse or partner (25%).
- Many caregivers of older people are themselves growing older. Of those caring for someone aged 65+, the average age of a caregiver is 63 years with 1/3 of these caregivers reporting fair to poor health.
- Older caregivers who are 65+ provide 31 hours in an average week on caregiving.
- Alzheimer’s and dementia caregivers provide care on average one to four years more than caregivers caring for someone with an illness other than Alzheimer’s disease (43% vs. 33%). They are also more likely to be providing care for five years or longer (32% vs. 28%).
- 40% to 70% of family caregivers have clinically significant symptoms of depression with about a quarter to half of these caregivers meeting the diagnostic criteria for major depression.
Family Caregiver Burnout Stories
We have recently heard about several cases of family caregiver burnout that prompted this informational post.
In one case, we know of a male caregiver who has been caring for his wife for several years. She has dementia which is progressing toward the later advanced stages. She asks the same question all day long, can’t be taken out of the house anymore as her behaviors are hard to control, she needs assistance with all activities of daily living including toileting and feeding, and is a safety risk all day and night. She is basically wearing out her husband who is also aged. He must cook, clean, care for the house and yard, and struggles to keep his social relationships such as attending church.
This caregiver is basically at the end of his rope. Family members don’t live nearby and come to visit throughout the year but can’t provide much support on a day to day basis. This man is at risk for depression and even suicide as he faces each day with trepidation about how it will be caring for his wife.
Another story we heard from our community was a man who has been caring for his wife since her fall three years ago resulting in a closed head injury and advancing dementia. She is currently at the point where he can’t leave the house for a minute to cut his grass or grocery shop without the fear of her falling and he can’t physically get her in and out of the car to take her along. She requires more physical care than his aging body can do. He is definitely depressed and has been observed yelling at his beloved wife and may harm her in a moment of frustration. He doesn’t want to place her in a facility but has no family support. The few remaining family members bring him more trouble than help so he has maintained a distance from them. He is also at the end of his rope.
Where Can Burned-Out Caregivers Turn?
Many spouses find themselves in similar predicaments. Where can they turn?
Many have gotten support from home health, private in home care, church friends or neighbors who provide respite, meals from an agency, cleaning or yard work help for hire or other support that comes their way. Many can’t afford help and have no family members to fill the gaps or provide them with relief. Their burnout could put the one who needs care at risk for abuse or neglect.
Some spouses just can’t handle the emotional stress of the changes that appear in such diseases as dementia. The affected spouse is not the person they married. Their personality is altered, they may not remember them, they may have behavior that is hard to handle, and the well spouse may be embarrassed by the changes and may not be able to understand that it’s the disease not the person.
Unfortunately, changes should happen in how care is provided to prevent danger to either spouse. It is not uncommon for suicide, neglect or abuse to occur when caregivers become burned out.
Family Caregiver Burnout Warning Signs
- Is the caregiver tired all day every day? Are they having difficulty sleeping at night?
- Is there no good day?
- Is the spousal caregiver sad that all their hard work is not appreciated and it doesn’t feel like they are really helping anyone?
- Does the caregiver feel overwhelmed, ready to cry often, is getting ill themselves, or not wanting to eat anymore or maybe eating or drinking too much?
- Does the caregiver feel hopeless, useless, trapped or beyond caring to complete necessary duties? Are they beginning to stop doing things or isolating themselves more?
- Does the caregiver feel like their life is not worth living?
Coping Strategies for Caregivers
- Eat healthy meals.
- Set limits on what you are capable of doing and get help for the things you can’t do yourself. Don’t try to do it all!
- Get a full night’s sleep.
- Find moments throughout the day when you can relax and recharge yourself.
- Find someone to talk to about your feelings. Reach out for help.
- Get respite, time away from your duties even if it is only for an afternoon. Agencies and organizations, even your church, may be able to help you with respite.
- Get out of the house even if you have to find someone to fill in for you for 30 minutes.
- Don’t push your friends and family away, you need them and they don’t mind providing a shoulder to lean on.
- Don’t waste your effort on things you can’t control. Be aware of your own limits. Blame the disease not the person and realize that you can’t take the disease away but instead focus on what you can do to make it better.
- Join a support group and lean on others either in person or online.
- Don’t forget to laugh!
For those who have the support of family caregivers who can step in and help, we feel confident that they can avoid burnout. Many more are not as fortunate and are at risk for burnout. They are falling through the cracks and need our support to help them along the way and be alert to signs of oncoming danger.
It is important for children to understand Alzheimer’s disease so they can still interact lovingly with family members who have this disease. I am a 17 year old college junior, Alzheimer’s researcher, and Alzheimer’s advocate.I grew up as a caregiver to my great grandmother who had Alzheimer’s disease. After her death, I founded a nonprofit organization that had distributed over 24,000 puzzles to Alzheimer’s facilities. Recently, the book I coauthored explaining Alzheimer’s disease to children became available on Amazon.My hope was to provide some helpful coping mechanisms to the many children dealing with Alzheimer’s disease among their family members. 50 percent of the profits from this book will go to Alzheimer’s causes. I think this book could help a lot of children and families. “Why Did Grandma Put Her Underwear in Refrigerator? A Book Explaining Alzheimer’s Disease to Children.” http://amzn.to/13FYYxh
Good luck Max! Thanks for sharing!
I am a 44 year old man who was born to a mother that was 49 when I was born!! My mother fell and broke her hip in 2009, after that it’s been downhill!! My mother has severe dimensia & my only brother (22 years difference ) passed away in 2010!! This has been the hardest experience of my life!! Now I’m left to care for her by myself, I can’t work, I have no social life (for 6 years) & I’m caring for someone & stopping my life for a person of which I have many unresolved issues!! My mother was not a nurturing mother & it was always jus her opinion with no consideration for how i felt!! Maybe she was spoiled by my dad during their 57 year marriage!! Sometimes I wake up and cry for no reason & it’s just a hard situation to handle especially when I can’t have a conversation with the person I’m caring for!! It seems like I’m doing all the sacrificing and work yet everyone else is comfortable but me!!! It’s jus not right, must i get the short end ofvthe stick ALL MY LIFE!! Whomever reads this please pray for me because I don’t know how much more I can take
Thank you for sharing Mark! We are sorry to hear that you are having a struggle caring for your mother but thank you for filling in to care for her during this time when she needs you despite your history. We encourage you to get help from community agencies and organizations that are poised to help family caregivers. You can look for respite so that you can get a much needed break, find daycare for your mom so that you can accomplish other things, find home care, and assistance from faith based organizations. We wish you luck!
Well, I’ve been taking care of my mother for eight months with the past three months being on Medicare’s home hospice program. I’m starting to crash and burn. I have no income and I don’t how much longer I can take. My mother doesn’t make it easy for me. She’s bedbound and sleeps a lot but when she’s awake and lucid all she does is complain.
She gets mad at me for not having any money but she knows I can’t leave her alone in our apartment while I work. I believe she is chronically ill and not terminally ill. If she would’ve done the physical therapy that she was supposed to do, I would still have my job. The thought of having to live like this for another year makes me sick to my stomach. I feel like God is punishing me:(
We are sorry to hear how you are struggling Monica but thankful you have been able to care for your mother. Caregiver burnout is a real thing! It is good that you are getting some support via home hospice. We suggest you seek out other means of respite for yourself so that you can see to your own health. Check out benefitscheckup.org, caregiver respite programs and aging services in your location to see if there is any help for which you may qualify. Helping you keep her at home is a goal for these organizations! Good luck and thank you!
Hi my mother has dementia and we have aides for 49 hours per week. When I visit her she is always sitting in the kitchen in her robe. The aides are wonderful and try really hard to clean her up and change her clothes. She refuses. She never goes out or comes to family functions She hoards cans and bottles and gets angry when I take them away. She also DOSENT trust aides when they change her sheets or throw away the garbage. I LOVE mommy but I hate who she has become. I bring her lots of homemade food, shop, and she has everything she needs or wants. The problem is I hate going to see her. The face of disgust, the repetion, and she always says “oh I feel drunk, what am I doing “. She loves wine and beer and the aides monitor it. She is 86 and in good health. I AM EXHAUSTED AND DISCUSTED. AND GUILTY
DANI
Thanks Olga for your comments. It is a very difficult thing to see our beloved parents change in front of our eyes. Do you have a support system that will help you work through your emotions so that you can care for yourself and others? If not, we urge you to reach out in some way to get needed support. It is so important for family caregivers to stay healthy in both body and mind so that they can deal with the challenges of caregiving. It is hard to remember we can’t change others, only how we react to things. As long as your mom is safe, that may be all you can do for her. Now care for yourself. Good luck.
Hi I am writing to you on behalf of my mom who is taking care of my dad .We get careers in the morning to get dad up and dressed which is great.But she is not coping not sleeping as dad is up all night trotting around the house.She is getting ill with it I am afraid she will have another stroke she is 76 and cant keep up with the washing as he is soiling himself ect
Who can we get to give her some emotional support we are now looking at putting him in a home but she doent want tlo and he is refusing to go but if he doesn’t go into a home i think mom will be dead soon
I live overseas and so do my brothers I spent 6 months with them helping out and he is hard work
The thing is mom cant leave the house in fear that he might do something stupid is ther no one that can go see her and advise her on how to cope until we get him in a home she says she is tired of being a nurse
If you can help me in any way that would be great
Regards
Earl harris
Thanks for sharing Earl. Unfortunately your story is one that is happening to so many seniors across the US and indeed the globe.
Has your mom thought to increase the in-home caregivers for more hours especially at night so she can sleep? This can help them both especially if they don’t want to go into a facility yet. There are also respite programs available depending on where they live that could help such as adult day care, senior centers, respite programs for those with dementia, organizations that give vouchers to help pay the cost and even hospice if his disease is advancing with no cure. Has she looked for a support group in her area that can give her help in the form of not only emotional support or respite but also education about local resources? You can encourage her to reach out for more help even though you are at a distance. Aging is not easy and family caregivers are shouldering much of the challenge of aging in place. Thanks for caring!
I am writing to you about my parents, 86 yr old mother and 84 yr old step dad who still live alone together. Mother has severe scoliosis, takes hydrocodone, fentanyl, gabapentin, duloxetine, combigan, omeprazole, prednisone, robaxin, buspirone and armour thyroid and ambien, and takes care of my stepdad who has neuoropathy and takes warfarin, a statin and several other stuff. My dad’s is getting dementia, has incontinence and falls frequently. Mother has to constantly remind him to eat, bathe, shave and brush his teeth. He’ll go for weeks without cleaning up. Mother has already spent several thousand dollars on root canals on him because he won’t take care of his teeth. He’s currently in a hospital rehab because he fell the other day, fractured 3 ribs, bled and bruised badly because he takes warfarin. Mother is unable to continue taking care of him. Oh and they also have a 14 yr old small dog that is partially deaf and blind! A housekeeper comes in once a week to clean house, wash clothes and change the sheets on the bed. I (the daughter) come about 1-2 times a weeks to run errands, pay bills and take them to appointments. I live 50 miles round trip away. I suggested she hire caregivers a few months ago but that didn’t work out. They have excellent long term care policies which include in home and nursing home care. Mother doesn’t want to spend any money (for the elimination period) even though they can afford it. She won’t make any decisions to do something about my stepdad. My husband says she’s stubborn. I’m at my wits end and I don’t know what to do. Most people have only one parent to contend with – I’ve got two! I’m 64 and not getting any younger. I have no siblings who can help. So far my health is fair to good. Any suggestions as to what to do when you’ve got a stubborn parent that won’t get help? Or won’t accept help when it comes to their door? My husband says I have no choice but to step back and let her do what she wants. That works fine until the next time my phone rings with a “help” at the other end of the line. Then it starts all over again. I have power of attorney but I don’t want to force them to do something they don’t want to do. I tried that earlier this year and it nearly tore us apart. Any suggestions?
Lynn, I am sure you are very frustrated with the situation and worried about their ongoing safety. I wonder if your dad was sent home after rehab as some won’t send home unless they will be safe and cared for there. They may have determined his living situation as unsafe with your mother in charge. Luckily they have resources to get more help. Can the person coming once a week come more often since your mother is accepting of this person? Will she understand that she accepts this or you will look for placement? She may need an ultimatum of your seriousness. If all else fails and she is competent, your husband may be correct saying let her do as she pleases until a crisis happens and you are able to make decisions. Are there any technologies that could help them (and paid for by LTC insurance) that will give you some safety nets without intrusion in their life such as stove shut offs, fall mats, Personal Emergency Response System (PERS) that will call 911 in emergency not you, grab bars, etc. etc.? Good luck finding a solution.
What do you do when rent and food takes almost all the money. My mom and dad are in their 80’s. My mom is the caregiver and none of us kids lives close enough to be there all of the time. Actually, I’m the only one that’s even somewhat close (2 hours away). All of us kids live paycheck to paycheck and I’m single so there’s only one of me. As a family, we make too much for any help – we’ve checked it all out. My dad is a veteran, but doesn’t qualify for anything. I’m worried about my mom. She does get help for a couple hours once a week, but it’s killing them financially. She can and will quit that and start using a day care five or six times a month soon. Us kids can afford maybe a few more days. But my dad is beginning to get out of control. What else can we do?
Rose, this is an all-too common situation with our older adults who need a little more help but have limited resources. Have you checked out BenefitsCheckUp.org? This is a way to input some of their information to discover if there are any assistance programs for which they might qualify. Sometimes you will be amazed at what is out there to help such as assistance paying electric bill, etc. You can also contact their Area Administration on Aging to see if there are any local groups that could help them out. Sign them up for the senior center so they will get a hot meal and help learning what is available near them to lighten their load. Also be sure their Part D prescription plan is covering all their prescriptions without more out-of-pocket expenses. Now is open enrollment time to check out other insurance plans. Good luck!