Throwing In The Towel: The 6 Most Important Questions to Ask When You Want to Quit Caregiving
I don’t know anyone who feels like they can just up and quit taking care of a loved one who needs it. The very nature of this role is that it’s not something you choose.
That doesn’t mean that we don’t often, or even always, wish we could get off the caregiving train. The work’s not fun. It’s unrelenting, hard and requires tremendous sacrifice.
Often in life, quitting can be a healthy thing to do… ending a toxic relationship, leaving a miserable job, or even moving on from a comfortable career so that you can do something more rewarding.
But, there are also times when we, either can’t or don’t really want to stop. We just need to find some way for the pressure, fear, and exhaustion to ease up a little.
If this is your situation, here are 6 questions you need to ask yourself.
Can I Let Go of my Expectations?
Caregivers are navigating unbelievably complex and time-consuming situations. Burnout is inevitable. But what creates the greatest suffering is the feeling that we can’t fix the unfixable. We can’t retrieve our parents’ dignity and happiness.
There’s no greater drain than enslaving yourself to a picture of how things should be. The bigger the gap between your picture and reality, the greater the pressure you’ll feel. And, it’s the burden of unmet expectations – rather than the situation itself — that steals all of your energy.
Letting go of expectations is SO hard but it is possible. Especially if you take it one day, one moment at a time — just try to accept whatever is in front of you no matter how much it disappoints or saddens you. Ask yourself if you can be okay, for just a few minutes, with the imperfection of yours and your parent’s situation.
What Can I Give Up?
As a caregiver, you’re the CEO of a really complicated enterprise. Successful CEOs are constantly re-evaluating their priorities every year, every month, every week and every day to figure out what’s most important. They delegate or let go of everything else. They know that otherwise they’d be ineffective.
Your job is no different. Pick the things every day that’re most important, do those and figure out how to let go of doing everything else.
Sit down and make a list of all the things you CAN give up; and all of things you could offload to other people. Be ruthless. Be strategic.
How Can I Get Help?
Asking for help is one of the hardest things to do. I wrote a whole blog on it.
3 Reasons You Might Not Be Getting the Help You Need
The two key insights you need to know are, first, that you have to be willing to risk rejection. Not everyone wants to help but PLEASE – that shouldn’t stop you from asking. Check out this amazing TEDx talk on the fear of rejection. It’s funny and inspiring!
What I Learned from 100 Days of Rejection
And, second, beware of the inclination to try and do everything yourself so you can be the hero. It’s scary how much I relish doing everything myself, and then I complain about it.
Do I Need a Break?
Really push yourself to consider whether you should and can take a break.
One of the top challenges I hear from daughters is that there is no feasible way for them to take a break. There’s no one they can rely on to take care of their parents in their absence.
But, a break is better than a break-down. There may be respite care programs at your local area agency on aging. If you can afford it, you should consider hiring someone to take your place once in awhile. And, if you haven’t asked a sibling or other family member to step in (see above), it’s time to try. Even teenagers can be enlisted.
How Can I Prioritize My Health?
We’re so lucky that our Atlanta Daughterhood Circle leader, Elizabeth Miller, has also created the Happy Health Caregiver blog and website. Her mission is to help overwhelmed caregivers create balance in their lives.
In her post The #1 Mistake Caregivers Make , she recommends that by packing “your Caregiver toolkit full of energy”, You’ll “set yourself up for success on a daily basis…”
She further to explains that you can “Sustain your energy by getting the sleep you require and by eating whole foods as much as you possibly can.” “take vitamins and supplements to optimize your health.” which “allows you to be ready for a tough day like an emergency trip to the hospital or an unexpected mess at the house.”
Is it Time to Seek Facility-Level Care for Your Parent?
Never for a moment think that moving your parent into a facility is the same as quitting caregiving.
You’ll still be your parent’s most important advocate and caregiver. But, you’ll have your house back and/or some peace of mind.
Don’t let the fear of what others may think cloud YOUR thinking. The decision to make this move can be the bravest and best thing you can do. So, work on leaving the guilt behind and always look forward, taking it one day at a time, living in the moment!!
I struggle constantly with the urge to give up. It’s all or nothing with me — I’m either a conquering hero of my professional and personal worlds, or wishing I could open an ice cream stand someplace where it’s always warm. But the paradox is that the true hero’s path — the journey that produces the best results over the long-term — is one that has many places to stop and rest for awhile.
My lesson to learn over and over is put beautifully by this quote:
“The world won’t get more or less terrible if we’re indoors somewhere with a mug of hot chocolate.”
― Kamila Shamsie, Burnt Shadows
And finally, download here Daughterhoods’ one page of tips and encouragements for when you feel like throwing in the towel. Put it on your fridge and when you look at it, imagine that we’re all having a cup of tea or a glass of wine together and know you’re not alone.
Thank you for sending these I am now at that place where I had to put my mother in an facility and I am always seconding guess myself if I did the right thing. and reading this makes me know that she is better off there then living alone and getting the care she needs.
Jean, you’re not alone in this. The decision to put your mom in a facility is just the hardest thing. Add to that second guessing ourselves, about the right move for our parents care, seems to be second nature for all of us. I think probably because we love our parents so much and want to do the right thing. I’m SO glad this helped ease you mind a bit.
This message was right on time for me. I’m 38, single, an only child, and my dad has Alzheimer’s and Parkinson’s. It’s tough, to say the least. Trying to balance my desire to have a family of my own, work full time outside our home, and replenishing my mental, emotional, and physical energy often have me feeling like a shell and ready to throw in the towel. Just being reminded I’m not alone with this word of encouragement is uplifting. Thank you!
Thanks for including Happy Healthy Caregiver in your compilation of great ideas for family Caregivers to get help. I never knew about that great site to plug in your zip code and find help locally! Amazing and I’ll be passing that one in my Community. I learn so much from my fellow Daughters….every day! I loved your quote about a ‘break being better than a break-down’.
I had my mom at home. Now in a nursing home. You have to stay on things. Even if they are in s nursing home. With mom’s restlessness from Alzheimers. She in a panic if I am not there a lot. But when she calms down. I look forward to getting my house, yard & cars back in order. I have came to the idea. I have to hire a sitter. Asked family for a sitter. They will not bother helping. Karma comes back around.
In my experience, there is no such thing as a break. Not only have I been caring for my mother for the past 10 years, but I have a 24 year old disabled mini-adult. I get 12 hours of respite per week for my disabled daughter…which gets eaten up by my mother’s various appointments or chronic medical and emotional needs. I get one trip to the beach each summer that originated through a reapitality program many years ago when all three of my disabled children were in my care (two now live independently). My husband doesn’t take this vacation with me; therefore, I take my disabled mother and daughter, their wheelchairs, walker, incontinent and medical supplies. Each day, I am able to enjoy maybe two hours alone on the beach, and the remainder of the time is dedicated to caregiving. My husband an I have one date each year to go Christmas shopping and to dinner. Every other anniversary, we may get a date night. We’ve been married 30 years.
I gave up my job as a parent consultant when I got my mom. When I can, I teach baton twirling in my yard so that I’m not required to be away from home. I travel to my oldest daughter’s home each week to help her. She and her husband both have disabilities and are in wheelchairs. She is a teacher, he is an engineer that works from home. They have a beautiful and perfect 6 month old son. I try extremely hard to balance my time so that I have enough to spend with him.
There is very little support for the caregiver. I have 2 brothers, but niether can tolerate my mom long enough for my husband, daughter and I to have a day together. There is also no stipend to replace the income lost.
I’m going to be honest…it is hard! Very, very hard!
Penny, thanks for sharing this. I can’t argue that is is VERY HARD. Please know though that you’re not invisible and you’re not alone. Use this space as much as you can and stay connected. What area do you live in? Possibly there’s a daughterhood circle nearby
Love this post! I’m a geropsychologist with a passion for caregivers and the people they care for, and I will definitely be sharing this again and again!
I am so grateful for the Daughterhood blog. At themoment, I am so exhausted because my mom once again awoke me in the middle of the night. We are the warriors of the world and unspoken heros. I find that keeping life as simple as possible is key and my daily meditation. It is a bittersweet journey we are on. We at times want it to end so we can have peace and rest and yet the thought of not having her is an excruciating mind- bender of an idea. The ultimate catch 22.
My parents lived with me till late 2015 when their doctor finally recommended that they move into assisted living, which, frankly, was hell for both them and me. My father could not accept the loss of his independence, and combined with dementia masquerading as personality changes, he took it out on me. After his death last year I had to move my mother (with full-blown dementia) to a nursing home. I still struggle with guilt that she can’t live with us, that she’s not the amazing woman I’ve known all my life. But now I’ve started wondering if I have mislabeled what I feel. Maybe it’s not guilt, but sadness?
I cared for my mother with dementia and parkinson’s disease. She has now been in a skill nursing facility for 6 months now. It’s the hardest thing I’ve ever had to do both caring for her until I couldn’t do it by myself any longer and having to make the discision to place her in a facility. I know now that it was the best thing for her. Skilled nursing is exactly that….SKILLED. She had a difficult time adjusting but she seems to finally be settling down. You never stop worrying about them but I know she’s in good hands. I visit her almost everyday. However I’m only a familiar face to her because she don’t know my name any longer but does recognize me as someone who is with her a lot and does things for her. Honestly if a caregiver is drowning in the fact they can’t do it any longer…reach out for help. Don’t let it get to the point you resent them for being a burden. In a facility, you can spend all the time you want with them, but can also have time for yourself and things you like to do. I respect everyone that is a caregiver. Hardest thing you’ll ever do. Love to all.
I need some advice.. I’m at the point where I cry when I have to go back to my mothers. I am there from Sunday evening til Saturday morning every week. My health is suffering as well as my personal relationships with my son. I was just in the hospital for 4 days and had to rest for 4 days before returning and I am thinking a facility may be needed. We have hospice coming in three times a week for an hour each time. I’m paying a caregiver to come Saturday and sundays to give myself a break. I just feel like I’m drowning and can’t take anymore. I almost feel like I’m in prison. She can’t be left alone because she fell one time in December. I just don’t know what to do. I have 2 siblings that help some but both work full time and have busy lives, so I’m the elected one to stay with Mom. I think I’m getting very resentful towards the whole situation.
Elizabeth I felt just like you. My mother couldn’t be left alone either. I have a sister, but she has stage 4 lung cancer and cannot help me with our mom. Nearest family is almost 3 hours away. My mom has Dementia and Parkinson’s. I was to the point of having anxiety attacks and not being able to breathe. My health was failing me too. I finally had to make the decision nobody wants to make….Putting her in a skill nursing facility. They told me they didnt see how I did it for as long as I took care of her. “Until you’re a caregiver, nobody understands what it’s like.” She’s been a facility for a year now, and is just in the past few months, she’s just settling. I did go everyday to see her but now I limit it to 4 days a week. My health is getting better and I now have time for me, my husband and daughter. Sounds like you and your family need to talk about maybe placing your mom somewhere if nobody has the time to help out. Praying for you and your mom.🙏🙏🙏
Elizabeth,
My Mom has a form of dementia that was caused by a mild stroke. Which means finding the right meds has been very difficult. My mother has been a handful to say the least.
My younger brother moved in with us about a year later, and has helped with some of the sleepless nights. I say some because if she is having a fit, which was often, I am up anyway. For me and my family at this time, though my mother may need a facility, we cannot, due to pandemic.
My sister who lives in Fl, and visited back in March, and stayed due to pandemic for a couple of months, got to experience my Mom. This had her come up with a plan of a schedule, for family. When I say family, she did not limit to siblings, she put it out there to nieces n nephews as well. We were overwhelmed and thrilled to see the response. We take what ever can be offered. Because as you know an hour or two is a blessing. We think who would, but when you have enough people offering one day or two hours a month, it’s not that bad for them. My Mom usually behaves more when it’s someone other than me. Somewhere there is still her composure for her non immediate family. Which works for us and her. She enjoys her time with them and we get the needed break. It won’t hurt to try and ask, if you get one person who says yes, is better then none. Praying for you and all caregivers. God Bless
I loved reading about all that everyone is experiencing. My mother has lived in my home since 2011. She (undiagnosed) seems to have some beginning form of dementia/Alzheimer’s. She can be very difficult at times. I struggle feeling so angry with her at time. Then I feel guilty for feeling angry and so it goes on and on. She and my step father did not plan at all for retirement, she gets her SSN so she has her pocket money. I have found that I’d I don’t cook, she will eat crackers or other finger food. She is hard of hearing and when she doesn’t hear something and I raise my voice she says “ stop screaming” which I am completely not screaming at her. If I say or do something she doesn’t like she will stop talking to me and give me the “silent” treatment. It is awe full. I am so frustrated and sad. I read something recently that really hit home “you don’t have to like someone to love them. “ so very sad.
I do not want to be my mother’s caregiver. She told me how selfish I was when I was a child. Now I am very resentful and angry partly because I feel she is the selfish one. There are no resources available. The only home care service has refused to care for her. I feel like I am being punished.
The really fun part of this begins when you wind up taking care of 3 generations – parents, then an estate and one ailing parent, a psychotic sibling and 2 kids who were abandoned by their mother after their sister died.
Add in another constantly enraged sibling who hasn’t worked since his release from prison 10 years ago who does nothing to help, and you have a recipe for being completely unable to take care of anyone properly.
I am in a process. It’s so hard, heartbreaking and guilt feeling all at the same time. My husband is a veteran, has PTSD, went through lung cancer and survived, has COPD and emphysema. Since ending his course of chemotherapy and radiation and cancer free, he has been in and out of the hospital for the last 20 times or the last 8 months with effects from a weakened immune system that is slowly failing him.
I have been a fulltime caregiver since June 2015. I am my husband’s caregiver for the last 4 year and this most recent episode that put him in the hospital and subsequently in rehabilitation center to try and get better, physically able to come home and manage meds but after all this time I am relieved that someone else is caring for him 24/7. That must sound terrible but I just can’t mentally do it anymore. I am so unhappy, resenting him being sick, his manipulative, narcissistic behavior to make me give up everything that was me to take care of him. I have no support, no family, no friends to speak of. We have had caregivers in our home 5 days a week but only 4 hours a day. Every other part of the days it’s just me. I have physically gotten no sleep between the morphine pills, the liquid morphine I give him anytime he requests and the constant 24/7, volume at 100 at night crazy shit fast, everyday! He’s 100% disabled and has benefits to be cared for properly and adequately at the Veteran’s hospital which is about 40 minutes away. I have agreed to have him transferred there permanently. Currently he’s been at a local rehabilitation center that’s 15 minutes from our home for the last 6 weeks. But they don’t do VA contracts in that nursing facility and they have an opening now to take him. I know he’ll get the very best care and for the last 6 weeks he’s been out of the house, I am able to get 6-7 hours to sleep at night. No blaring TV at all hours of night and I am not afraid to put my head down and sleep gir more than 2 hours at a shot without him screaming my name to come downstairs and sleep on the couch. I did that for months and screwed up my back so bad no I think I have sciatic nerve pain down my legs. He goes in 2 days but why do I feel so guilty when he’s begging to come home soon? But I can’t go through that cycle of better for 2 weeks until he either gets pneumonia or cellulitis in his legs that puts him in the hospital for the umpteenth time, then to rehabilitation then back home for the cycle to begin again. His COPD is end-stage. He has fallen many times at home but in the last few weeks he has slipped and fell there too but it’s due to him not asking for assistance. He gets dizzy or unaware of his surroundings and falls. He is forever in the toilet because he’s so constipated from the years and years of narcotics that his bowels are shot! I am so afraid that things won’t go smoothly for this transition to the VA and they’ll be unable to handle him but I have to take a step back and see this is the best thing for him. But have guilt that I should be sacrificing me for him but my family says it’s time and I think they are right. But what do I do with how I feel. It’s tearing me up inside and I have no one to talk to. I am sitting here in my house with my freeloading brother of 52 that has no job, no money ac and no I feel like I has someone else to have to worry about. What do I do? HELP ME!
Francesca, Rest assured that you’ve done everything you can in faithfully caring for husband. I know you feel guilty about sending your husband to an institution but I know you realize you just can’t continue on your own. Please know that it’s not remotely possible for you to have continued with things the way they were. You’ve already sacrificed a TON of “You for him” and as loving as your intentions are you need to let that go. Francesca, I’m so sorry – none of this is easy but you’re doing the right thing – we support you 100%
Aurora,
A thought, and I had this same one for my Mom as well, who now screams and yells at me, and is strong enough to pull my hair out if she gets in reach of it. She is 80 and has a form of dementia caused by a stroke.
What if she had a form of manic depression and was never diagnosed? Looking back for my Mom it could have been possible. No Mom has a book that tells you how to do everything right with children, but most try to do their best. My Mom called me lazy and stupid…but I now know these were the tools she thought would make me, not lazy and stupid. Meaning she wanted me to be and have, better.
My mother and I care for my sister, she has sever copd, is on 6 liters of oxygen 24/7, is legally blind, still smokes like 2 cigarettes a day…I have been helping care for her for the last 5 yrs, I feel extremely beat up, depressed, angry, resentful and completely overwhelmed, everything is about her, I want out so bad, but the only other alternative is a nursing home, my mom is 81 and completely wiped out, there are no helpful programs in our area, God help me I’m damned if I do, and damned if I don’t 😭
Believe it or not, there are so many others in your shoes. There are no easy solutions and no “right” decisions. There’s only what’s least bad. And when you consider the options, I want to tell you that you must consider your own well-being in the equation. You and your sister matter. Sometimes you have to consider how each option impacts the whole family. Sometimes it’s easy to assume that the needs of the “sick” person come first, and while that makes sense for short-term illnesses of family members, it’s not an approach that works long-term. I can’t tell you what to do but I can give you permission to take yours and your sister’s needs into consideration. And remember that setting boundaries never feels good.
I have been caregiver for my mom and my dad and October it will be six years. I lost my dad two years ago and I’ve never been the same. My depression and anxiety are through the roof. I wish I could get some type of income coming in to be the carrier. I take her my mom now and we live on her Social Security which isn’t very much and I have to borrow. money all the time for my mom,
I have no type of insurance or any money coming in. I wish the state with that South Carolina he will get paid further caring because I don’t. It’s just me and my mom no one else. Sorry the world is today. Please please let me know if you know anybody or any way to get paid to be a caregiver in South Carolina.
Sending hugs and prayers to all the caregivers out there that don’t get paid.