An honest look at the sucky parts of caregiving
Ann Brenoff became a caregiver to her husband when he suddenly went into acute kidney failure. She wrote an article about her recent experiences for the Huffington Post titled No, Caregiving Is NOT Rewarding. It Simply Sucks.
Ann writes honestly about how angry she feels when people (and brochures) talk about how rewarding caregiving is. She says “It is many things, but rewarding isn’t one of them. It is life-disrupting, frustrating, painful and heart-wrenching. It is time-consuming, exhausting, frightening and depressing. I have scratched off the film on my caregiving lotto ticket and have seen nothing that even comes close to a reward.”
Of course Ann loves her husband, but that doesn’t mean she isn’t frustrated and angered by everything that’s been thrust upon her. As his health advocate, she’s forced to constantly fight with social workers, doctors, and other staff to get him the care he needs. Their lives will never be the same and there’s a tough road ahead.
Caregivers deal with conflicting emotions
Being a caregiver is no picnic and none of us asked for this all-consuming job. It’s a constant struggle – against the healthcare system, our own bodies and minds, and even against our older adults when they can’t or won’t cooperate.
It’s natural to have strong emotions, even conflicting ones. We can be sad, angry, compassionate, frustrated, anxious, loving, and totally fed up and burned out…sometimes all at once.
Get caregiver stress relief from venting feelings
Don’t feel like you need to deny your true feelings. Letting your emotions out is an effective way for caregivers to relieve stress and cope with what’s happening. We applaud Ann for speaking openly about her challenges and sharing how she really feels.
Non-caregivers may not be able to understand, but that doesn’t mean you always have to be strong and silent. Find people you can vent freely to – friends, family, and caregiver support groups are good places to start, We bet anyone who’s been in similar caregiving situations will absolutely get it and that expressing yourself will help you feel at least a little better.
Next Step Get Ann Brenoff’s honest thoughts about how hard the caregiving experience can be
You might also like:
— 8 Benefits of Caregiver Support Groups
— Alzheimer’s Support Group on Facebook: Memory People
— 4 Ways to Reduce Stress from Caregiver Emotions
By DailyCaring Editorial Team
Image: Home Instead Senior Care, Mission Viejo
Debbie Pounders
Thank you everyone for sharing. I feel blessed that I discovered this site. In limbo I’m getting ready to enter this abyss. My Mom is 92 and in advancing dementia. My sDad is the kindest creature that ever walked into our lives. He treasures my Mother and feels he was given this task by God to take care of my Mother. However because he has been her husband for 21 years, her dementia started advancing during the isolation from COVID. The stress it brought on him with her mean lashes and threats of sundowners. I just returned from a month to give my sDad relief. He was to spend some time with his son fishing. I was really hoping he would go and I encouraged him, but listening to my Mom guilt him, he backed out even after I packed his suitcase for him. Those moments where she screams words I never thought she knew have taken its toll. He needs heart valve replacement. He is 84. I live in Florida, my parents live in Tennessee. My husband is 73, and needs me as well. But I’m 62 and otherwise a healthy professional artist. But I’ll need to be with Mom while my SDad is in the hospital. God I pray he makes it through the procedure! I’ll be there no matter what.
Anyway, I could go on and on. I’ve been reminded the worst is yet to come. That sweet professional woman who inspired my ambition and who could laugh loud and love strong is nothing but a presence. 🥺❤️😢
DailyCaring
Thank you for sharing your story 💜 This is a tough situation to be in, both for you and for your dad.
We’ve got some articles on managing challenging dementia behaviors that might help you and your dad improve the situation. See them all here – https://dailycaring.com/tag/challenging-dementia-behaviors/
itsamystery
I’m surprised there isn’t more talk/info about applying for Medicaid (which would pay for nursing home or at-home care for people who own a house, but not much more). I found out about this while caring for my elderly aunt who owned her house but very little other assets. She became too difficult for me to care for properly & we couldn’t move her into my house.
DailyCaring
That’s a great point, we have a separate article that discusses Medicaid qualification here – How Medicaid Spend Down Helps Seniors Qualify for Long Term Care Benefits https://dailycaring.com/how-medicaid-spend-down-helps-seniors-qualify-for-long-term-care-benefits/
tw
My entire house now stinks of urine and feces. Caring for my parent takes up a ton of my time. Up and down stairs all day and evening to feed, medicate, check on, etc. Wheelchairs, bedside commodes, walkers, and other devices scattered all over the place. The worst part is my deadbeat siblings that couldn’t care less. I drink way too much, everyday now, because taking care of my parent totally sucks! Honestly, I don’t care if the drinking kills me because this isn’t living.
DailyCaring
I’m so sorry that you’re dealing with all this and that your siblings aren’t supportive.
Getting some help could allow you to take some much-needed breaks and have time away from caregiving. Finding some good ways to manage incontinence and healthy coping strategies may also be helpful.
Here are some articles with helpful suggestions:
— Caring for the Caregiver: 6 Ways to Get Help and Improve Your Health https://dailycaring.com/caring-for-the-caregiver-6-ways-to-get-help-and-improve-your-health/
— 8 Benefits of Caregiver Support Groups https://dailycaring.com/8-benefits-of-caregiver-support-groups/
— 11 Caregiver Support Groups on Facebook You’ll Want to Join https://dailycaring.com/11-caregiver-support-groups-on-facebook-youll-want-to-join/
— 9 Ways to Make Incontinence Care Easier on Caregivers https://dailycaring.com/9-ways-to-make-incontinence-care-easier-on-caregivers/
— A variety of stress relief tips and suggestions https://dailycaring.com/category/caregiver-wellness/stress-relief/
Stephanie
For me, it was a thankless job. It’s been a total of 17 years, between both parents. My advice to anyone who have had too man years of this can no longer handle this responsibility would be: don’t. Turn it over to the professionals–before you yourself end up with a stroke. There’s nothing wrong with having a limit and threshold of what you can or can’t handle. That’s what makes you human. Too many unfair and unreasonable expectations. I myself decided if I (Godforbid) become incapacitated, I’d want to separate from my spouse because the last thing I want is to enslave my spouse to a painstaking and exhausting life of a caregiver. Marriage is demanding and if you have a condition threatening this, for the love of God, set your spouse free. Same goes for children/siblings.
DailyCaring
Thank you for sharing your story ❤️
Martin M.
I’m about five months in caring for my 75 year old dad who had a heart attack and an ischemic stroke (I’m a single gay man in my mid-40’s in the Pacific Northwest). My mom died ~12 years ago from lung cancer and I am an only child and my dad isn’t a candidate to go into a nursing facility based on insurance coverage, his income, costs of private care, and availability in our area for a veteran’s home. Admittedly, I read Ms. Brenoff’s article about once a week to remind myself I’m not alone in this ordeal.
It’s hard to not be in a rage from the frustrations of dealing with a person not in their right mind; hard not to stress about placing my own life on hold (career, friends, vacations, simple dinners out, etc.) to care for another person at the sunset of their own; and hard to continue to do this each day with zero thanks from the patient and no help from anyone. The guilt I feel each day, awaiting for my father’s death and the feelings of frustration and resentment towards him, are difficult to cope with and admittedly, hard to voice to my friends and extended family – I feel like a heartless jerk thinking these thoughts, but I have to admit, his passing would bring everyone involved, including him, so much peace.
While I’m not the most religious person on the planet, I certainly consider myself spiritual and say a little prayer each night before bed after finding at least one thing I’m thankful for each day – oftentimes, I repeat the same thing each night as something I’m thankful for, but at least it’s something bright I can find in my day in the dark, depressing life of a caregiver.
DailyCaring
I’m so sorry about this situation, it’s incredibly tough to be caring for someone and feeling so alone. But you certainly are not alone, there are so many in similar situations — just like Ms. Brenoff. It’s wonderful that you’re reading her article to remind yourself that it’s not just you who is going through all this and who’s feeling all these conflicting emotions.
It may also help to join a caregiver support group so you have a chance to interact with others in the same situation. It can be a major source of support and comfort. Both in person and online groups are great to try. Some suggestions here:
— 11 Caregiver Support Groups on Facebook You’ll Want to Join https://dailycaring.com/11-caregiver-support-groups-on-facebook-youll-want-to-join/
— 8 Benefits of Caregiver Support Groups https://dailycaring.com/8-benefits-of-caregiver-support-groups/
In case it’s helpful, we’ve got some suggestions for ways to get help with caregiving so you can get regular time for yourself: Caring for the Caregiver: 6 Ways to Get Help and Improve Your Health https://dailycaring.com/caring-for-the-caregiver-6-ways-to-get-help-and-improve-your-health/
Terri
I needed to read this so much. I am caring for my Uncle with ALS and feel like I am at my wits end. People that arent caregivers simply dont get it. “Friends and family arent there. They are either glad its not them or dont want to be brought down with your stories or stress.
This is the hardest thing Ive ever done in my life. I love my Uncle so much and at the end of the day, I still feel like I made the right choice in taking this on.
But WOW how refreshing it is to read folks being real about this.
Now maybe an article on how to deal with the guilt of being human and feeling this way.
DailyCaring
I’m so glad this is helpful. What you’re doing for your uncle is amazing. Caregiving is an incredibly demanding job and you’re definitely not alone in having these negative feelings come up. It’s very common and understandable given the tough situation.
We’ve got a few articles about dealing with the guilt that comes with difficult emotions about caregiving:
— 7 Ways of Dealing with Caregiver Guilt That Improve Health https://dailycaring.com/7-ways-of-dealing-with-caregiver-guilt-that-improve-health/
— 2 Tips for Managing Difficult Caregiver Emotions: Advice from a Social Worker https://dailycaring.com/2-ways-to-manage-caregiver-emotional-stress-tips-from-a-social-worker/
— The 7 Deadly Emotions of Caregiving: How to Cope https://dailycaring.com/the-7-deadly-emotions-of-caregiving-how-to-cope/
Ashkhen Aristakessian
Perfect description of my feelings about caregiving. It is not rewarding and it sucks big time! 12 years into it, and it will not end until my husband’s life ends…a long goodbye 🙁 so, as much as it sucks, I don’t want to end it.
DailyCaring
I’m so sorry to hear about your husbands conditions and the stress it puts you under ☹️ Your feelings are perfectly natural and understandable — caring for a loved one causes such intense mixed feelings. Big hugs ❤️❤️
Bunny Pickweed
It sounds so easy, caregiving. Meals, doctor’s appointments, prescriptions, and laundry, so what’s the big deal? What’s everyone complaining about?
Caregiving is a nightmare, that’s what! It’s just a complete, unforgiving nightmare. Caregiving for family and friends has fallen on my lap five times, and it is so hard!
I was young the first two times, and it was easier then, but still, in the end, I was left heartbroken and in upheaval.
I started again when my dad got sick, and moved home for a year. He was the sweetest man, never mean, always trusted me, never argued, and I treasured every moment. But my mother? She reverted to a very cruel teenager, a spoiled fourteen year old, and she hated me. I never knew! I never knew my mother hated me, but she screamed and yelled it plenty of times that year, so now I know. I am still crying. My heart us broken, and I will cry until I take my last breath…
Then I moved out of state for a year to care for my best friend, and she too, was a screaming teenager. A rebellious teenager, rebelled against the doctors, social workers, friends, family, and me. Mostly me. But every night she said “Good night, I love you..” I watched her die the worst death I have ever seen, and her suffering was beyond anything I could imagine. The State of California was willing to pay me, but she rebelled against the social workers and had delusions regarding the paperwork. She was so sick, I let it go, but it cost me dearly in the end.
And now I’m caring for an 82 year old man, and I am exhausted. I’ve known him for 25 years, he was an older boyfriend of mine, and we had some great years, but not anymore. He suffers too, terrible pain, and he’s mean. The neighbors can hear him screaming every day, and he hates everything I do. I quit two years ago, and he hired a new caregiver, so I was off the hook! Until my phone started ringing, friends and neighbors, concerned about his well-being. They called her “Kathy Bates,” after the movie, Misery.
Then he begged me back, and again, I am isolated, exhausted, depressed, lonely, and scared. Scared about my future, and scared when it
looks like he’s not breathing, scared about my health, scared scared scared! And all this, with a smile on my face, I am always smiling!
And I have two people wanting me to caregive for them right now. Two!
I started a support group, and it really helps. I’m not into support groups ir anything of the sort, but it is so great, I can’t believe it. I want to explore ways to make caregiving a good thing. It shouldn’t be like this for everyone. Google “caregiving” and good luck finding one positive article. Is it like this in other countries? I bet in Other places, like France, you get to relax together, sip some wine, and treasure the last days, sitting on a porch, and remembering together, a good life.
DailyCaring
I agree, caregiving is an incredibly tough and all-consuming job. It’s amazing how many people you’ve cared for and how much you’ve sacrificed for their benefit. It’s wonderful that you’ve started a support group. They are so much more helpful than they might seem. I especially love your attitude of making caregiving a positive experience. It’s difficult, but we all do it because it’s important to us. On this site, we take a positive approach and focus on practical tips and advice that can help improve everyday life. I hope you’ll find our articles a helpful and positive addition to your day. Big hugs <3
Bunny Pickweed
Awwww! Thanks! You made my day!
Pat
I am so sorry your going through this. These people had no business throwing that in your lap. It is not responsibility to fix the world. You have done your share let Kathy have it…and suggest that the concerned individuals volunteer to some of the care giving. Don’t feel bad, because that is how they try to rope you back into. No one should have to suffer ptsd because of a unhealthy work environment. Enjoy the rest of your life…sit on the beach and sip some wine..let it go….
Wendy Allen
Caregiving does suck!! I’m glad someone spoke up and said so!! I’m taking care of my mother, who has Alzheimer’s, and while I in no way blame her, and would never make her feel badly about it, I am always feeling stressed, always tired and missing out on my life. It is a life disrupted for us both. It’s rough for everyone involved. There is no joy or happiness in watching a loved one slip away mentally, one day at a time.
DailyCaring
We’re glad Ann spoke up as well! It’s an incredibly hard job and while there may be rewarding or meaningful moments, it’s a stretch to say that everything involved in caregiving is rewarding. With all that you do for your mother, it’s no wonder you’re feeling stressed and resentful for having your life turned upside down — that’s a completely natural response. And it’s so painful to watch someone you love slowly decline in front of your eyes. Big hugs to you, Wendy <3