It’s not uncommon in this country for caregivers to be caregiving for 5 or more years and well beyond. They are the long term caregivers for a nation. Most are extremely overworked, under paid — while the majority are not paid at all — and, most are under appreciated. It wouldn’t be incorrect to call them “the unsung heroes of a nation.”
Some caregivers are forced to give up their job, not go to college, drop out of college, live separate lives from their families, end up divorced, pushed into poverty, and the list goes on and on. It’s a real tragedy, when you think some of those caregivers are disabled, or become disabled while caregiving.
Knowing these things, I’ve written this short article on the effects long term caregiving can have on, what may have once been normal, happy people, and the way it can destroy a relationship or relationships with a loved one(s). Sometimes it can be very emotional and take on the form of resentment, rage, instability, mental illness, often leading to a complete melt down, and eventually caregiver burn out.
The sad reality most folks won’t talk about is the fact that many caregivers die before their loved ones do, due to stress by all causes.
In the beginning, a caregivers unselfish love and can do attitude gets them through each day, and some tough times, but, since caregiving does not come with instructions, there’s usually a huge stressful learning curve.
However, over the long haul the stress that was slowly building up over the years has come to a head. The caregiver has had enough. Their mind is now taken over by the dark side of caregiving, and the rational becomes irrational. And you do think about, how nice it will be when your loved one is no longer around, and you don’t have to wait on him/her hand and foot, with their demeaning and demanding attitude. And quite frankly, many loved ones do have demeaning and demanding attitudes. Sadly.
Many of those suffering from burn out fail to see their own symptoms. But as an outsider caregiver looking in, it’s all hidden in their words which reveals their true thought process. They’re at the end of their rope and trying to go into survival mode. All hope has been lost, evaporating into the reality that things aren’t going to change. And often times they don’t, until the loved one or the caregiver passes away.
And make no mistake, after a loss, caregiver burnout has already left it’s mark on you. Things will never be as they were before caregiving. How could they be. You feel beaten down, battered, bitter and now society expects you to readjust to a world that is a far cry from what it was several years ago.
The illusion of a dream–the thought process
So, it’s almost over. You’re going to suffer a loss, or maybe you’re just glad your loved one will be free of all the pain and suffering. Whatever be the case, for many of you, you think, you’ll be entering into a new world, where opportunities and possibilities abound. You’re feeling a little excited, with a renewed sense of the life that, awaits you.
You’re feeling burnt out and sick and tired of being sick and tired from years of caregiving for what was once a loving loved one, that turned out to be nightmare in disguise, over time. But soon it’ll no longer be your problem as, your mind wanders to, everything is going to be okay now. Just common sense, isn’t it.
Just think. You will be able to do whatever you please. No more feeling like a pharmacist handing out drugs, racing to the store for supplies, in fear, as you worry about your loved one lying at home in bed. And how about all those dirty diapers you’ve changed, getting up all hours of the night for the same old things, or perhaps something different and maybe unexpected. Yes, you are exhausted and now you will soon be getting a much needed break from all the long hours and wretched chaos, forever. You can’t wait.
Oh, and all those appointments to the medical center, where often times you were treated like, well, like a pest, because you asked a medical professional why you were still waiting, when your loved one’s appointment was two hours ago. You wonder, don’t they understand that you’re a caregiver, and deserve respect and maybe a little admiration. Well, no need to worry too much about that now, it’ll soon be over. And you know, how you told anyone that would listen to you how miserably tired you were of getting your ungrateful loved one in and out of the house, the car and the hospital, while pushing that awful wheelchair with the weight of your loved one and those oh so squeaky wheels. Way too much work for one person, you thought with a sigh.
As you rub your hands together, you get excited as you can once again think about hooking up with all your family and old friends, the ones that all disappeared during your long caregiving journey. It’s going to be a glorious day as they all welcome you back with open arms, even though, during your time of need they all deserted you. Surely, you think, the true dynamics of your friendships or family relationships hasn’t changed, and stood the test of time. They wouldn’t move on without you, would they. It’s only been a few years and won’t be long now. So with your head tilted, and your eyes rolling back just a bit, you smile naively, as you look to your future, with the ones that deserted you.
And those dreadful meals, with the specialized diet to suit the needs of your loved one, wow, you think, what a hassle that is, as you skip to the trash bin and throw the recipe book in, while thinking, that it won’t change a thing. You know in your mind you will be free soon, from such a complicated ordeal, especially when your loved one never really appreciated and often rejected the food, anyway. Never mind, you won’t have to do that much longer, thankfully.
As you stare at the ceiling, you’re grateful that soon you will no longer have to give bed baths and wash all the soiled clothing from vomiting or accidents your loved one had. Ah, and it’s going to be so nice to not have your nap interrupted. You’ll now be able to sleep anytime you want and all you want. There will be no more sleepless nights for you. That’s will be old news and you’re be so over it.
The snoring, that was once upon a time sweet music to your ears, sometimes during the day, or night that, let you know your loved one was still alive, has became so annoying. Relief swells inside of you as you know, the music will soon go silent, forever.
When having a conversation with Aunt Martha (fictitious), the one you loved the most could, no longer take place, as she didn’t know who you were, things changed. It was so frustrating caring for a loved one where there was no appreciation or acknowledgement of your biological connection, just a demanding old lady that was so damn mean. Having to lock all the doors so she doesn’t go on a walkabout is a nightmare, while remembering that dreadful time when you accidentally left the door open, turned your back and she simply disappeared into the night. It took the police and a silver alert to find her. How embarrassing and humiliating that was for you. But that will soon be in the past, and you’ll never again have to care for a loved one that doesn’t know or appreciate you.
How about the day you shouted out, “I can’t do this anymore, you’re driving me crazy!” “Would you please just shut up!” Again, I’m not going to do this anymore, as you pack your bag and walk out the door, leaving a crying loved one all alone to fend for his/herself. But, as you walked away that wretched guilt kicks in and despite your best effort not to return to the home, you do, while telling your loved one, next time I will leave you for good. After all, you were in charge. But you know, if you can just hang on, it won’t be long until things get much better.
Remember the day the green light came on in your head, as you were trying to figure out how to deal with your often unruly loved one. You were now prepared, and with an air of confidence and satisfaction in your voice you threw out the “N” word. If you don’t straighten up, I shall put you in the dreaded “Nursing Home,” and you’ll become the problem of someone else. In your mind you’d be thinking, problem solved. It would be either, straighten up or get shipped out. Your choice.
The biggest problem I see with the paragraphs I wrote on illusion is that, those folks are not taking into account caregiver addiction. They never do.
When my wife Annie died, it took me quite awhile to figure out what it was that made me feel so useless. I knew it wasn’t the grief, it was a different feeling.
It took a few months and a good psychologist before I could pinpoint the feeling that was troubling me. Eventually I realized that I was addicted to an extraordinary lifestyle, this body that was always in motion, had now stopped moving. I had lost my purpose and didn’t know what to do.
I can understand wanting caregiving to end, but if that’s you, prepare yourself, it’s probably not going to go the way you think it will.
The folks in the above paragraphs didn’t simply wake up one day and say, I want to be a caregiver, especially not for the long term but, “Life Happens.” And when it does, most folks aren’t prepared for the potential long haul they face. In fact, most don’t have a clue what their getting into.
In the end, some simply can’t take it anymore and that’s what this article is about. Good people, looking for a way out of a nightmarish situation. Many are so burnt out, they lash out at their loved one and anyone else that disagrees with them. And some are simply dreaming of the freedom they’ll have when the caregiving is over.
Unfortunately, when you’ve been a long term caregiver and the caregiving comes to an end, most, that became very lonely and isolated during the caregiving, become more isolated and lonely as they’ve lost most of their contacts in the outside world. It’s difficult meeting new people when you really don’t even know how to start a conversation. Your best bet is find some sort of support group in your area for loneliness, perhaps make a few new friends and take one day at a time…Slowly working your way back into the real world and a new reality.
What I just spoke of is the tip of the ice berg. A caregiver would normally be the patient advocate. But as you can see, as the caregiver burns out, that is no longer possible.
It’s been said that caregivers save the US Government billions of dollars annually. One wonders why there is not more help for caregivers. When one does find some sort of program that might help, there’s so much red tape and hoops to jump through, many give up trying. It’s tough.
However, if the government simply took half that money, and used it wisely, it would make a big difference in the lives of all caregivers, in some form. That would be my wish.
Reality Check and Sad Story: There was a young lady that was getting ready to leave for college. Her father was deceased. Out of nowhere her mother developed a long term physical illness. She didn’t make it to college, instead, she became a full time long term caregiver. When I read her post she’d been caregiving for 20 years. She was 40 years old and trying to inspire others through her journey with her mom. She was giving up the best years of her life for her mother. People this is happening more than you might or want to think. Quite frankly, it shouldn’t have to be this way. However, there is no viable safety net for the majority of caregivers in this country, the richest country in the world.
Many immigrants once said, the United States is a beacon of hope for the world. If one believes that, “what about the caregivers of this nation.” We’ve been left behind. Where’s our beacon of hope or light…Many caregivers have little hope, and live in the darkness. It takes light to disperse darkness.
Wishing you all, the best, in hopes that this new year is treating you kind.
Note: The illusion paragraphs were put together using words from posts I’ve read over the past 3 years. People do say these things and think these thoughts, especially during the burnout stage. I see it often.
I lived in hell for 27 long gruelling years, being caregiver to my elderly parents. They appreciated nothing. I am an only child and was driven half to death, trying to meet their never ending demands. I lost my job from having to take months off at a time to care for them. It was a horrible experience..!! No matter what the weather, I was expected to drive for 2 hours in each direction to do their shopping. No way would my dad even consider trying a shopping service offered by a local store near them. I could go on for days about this, but won’t. Hats off, to caregivers everywhere. My heart breaks for you…! My parents are both deceased now. I still have nightmares…
My dad left when i graduated high school. My mom wasn’t able to support herself so i continued trying to work & take care of my mother on my own. I dropped out of college to work & support us both. I am now 40 years old. I have taken care of my mother for the last 22 years and it’s very hard because she is still in her sound mind. She is undoubtedly my best friend & i know how much she loves me, but I’ve dealt with her pain issues, anger issues, millions of drs appts, mood swings, etc, for over 20 years. I’ve never had the freedom of doing anything I want, without first considering how my decisions will affect her. Ive had no long term relationships EVER, she has always had a bad temper & still uses it to intimidate me at 40. I don’t fight back with her often to avoid having to live in a stressful environment. If i do it just makes it worse.
Although she is toxic, i know she isn’t maliciously that way & i know it was due to her childhood, so it makes it harder to be angry. I couldn’t live with the guilt of putting her in a home unless she needed medical attention that i couldn’t provide. After all, I’ve already given up all my 20s & 30s. I’m afraid therapy would be a waste bc i know i will be told that things will never change unless we separate.
She has no one else in her life, so I’m the one that gets everything taken out on. She still thinks of me as her 16 yr old, although I’m 40 & there’s a constant struggle with power control. She will never have a rational conversation about it, bc she would never accept accountability for her actions. I know there is no answer here, but maybe someone has some coping mechanisms? I’m growing resentful that i not only never had the freedom of my own separate life, but that at times, respect is lacking as well. She was the best mother (aside from her temper) growing up & she has had a lot of physical as well as emotional pain in her life. I would never give up on her now, but I’m tired of being afraid & constantly making sure my every decision will not negatively affect her for fear of being blamed. I’m sorry this such a long post. Thanks in advance.
This almost reminds me of my situation. I turn 30 this year and I’ve had to take care of my mom since she hurt her ankle not long after I graduated high school. My parents got divorced 2 years prior to that. Graduating college is the only thing I’ve done in my 20s. No job. No job experience. No girlfriend/wife. No kids. Still stuck in the nest because of her not being fully mobile and overcoming breast cancer treatments over 3 years after she finished them. She won’t get anyone else for fear of Covid and getting robbed blind. Refuses to do any form of physical therapy for fear of getting Covid and too lazy to get a dietician/nutritionist. She’s a nutrition expert in her own mind and her strategy hasn’t and will never work.
Like with you, my mom infantilizes me. She’s a safety freak (always has been) and I really feel like she’s emotionally manipulative and guilty of (unintentional) gaslighting. I have to make sure I don’t say/do anything that might ruffle her feathers in some capacity. One time, she was talking about how she told my dad that she may not need to do physical therapy. I wanted to tell her that she needs to do physical therapy anyway, but before I could say that, I had a look on my face and that look, along with her knowing I was about to say that, was enough to make her cry. Talk about a big baby. I can’t tell her what she needs to hear without upsetting her. It takes a lot of courage just to simply make a suggestion to her and even if I’m as gentle as a feather, it can still upset her at times. She’ll get on me and tell me “I’m doing the best I can.” In reality, her best is nowhere close to good enough. It will take someone with a stronger will than mine to convince her to do more. She tells her friends that she’s getting better and stronger, but that’s nowhere close to what’s happening. One friend of her unknowingly realized my mom was painting a rosy picture of her post-cancer treatments
I’m not her husband. I’m not her father. I’m not her grandfather. I’m not her nurse. And I hate being that woman’s hero. She tells me she appreciates me and loves me best, but her working me to death and refusing to get extra help and step up her game a few notches says otherwise. I was too burned out to grieve when my dad passed away.
I’m thankful for all she’s done in my life, but at this point, I want to throw her in the nursing home and move on with my life. But I gotta wait for Covid to end and to get the money to pay for the nursing home, either through winning the lottery or waiting until my grandmother dies.
I am here. I do not want to be a caregiver any more. Seven years ago at age 52, I retired to take care of my Father and Mother. I am an only child, no help. My Father had dementia, Alzheimer’s, Parkinson’s disease and the dreaded Levy Body Dementia. I helped my Mother who had vascular dementia and rheumatoid arthritis at the time, take care of him. It became apparent that he needed to be in a facility. I stayed with her 24/7 because “she could not handle it” after he went to the nursing home. I went everyday that he was there fir two years and sat with him and then back to her house. Did I mention that I am married and left home to do this ? My poor husband is a saint. My Father passed away in March, 2016 and my Mother was immediately diagnosed with Alzheimer’s. She has rheumatoid arthritis, aortic aneurysm, lung cancer twice and still chain smoking and now metastatic cancer of the spine. My life is handing out pills, cooking, cleaning, laundry, doctors appointments, radiation therapy, drug store, grocery store, bathing, helping to dress, doing all of her bills and not enough money available, exhausting my retirement income, etc. I lay in the bed every night and weep. Every night I weep until I fall asleep or until she starts yelling in the night for me to get up and that is only on the nights that she actually knows me to call my name. Every morning brings the feeling that I cannot take another step but, somehow I do. In an attempt to make things normal for my husband, I ran home for two hours (we live 4 miles apart and it may as well be 4,000 miles) and put up the Christmas tree, sat and looked at it with him for 10 minutes and then back to my Mother’s. That was our Christmas this year. I have had two Grandchildren born in the last 20 months and have no time with them unless they come to my Mother’s and she yells at them frets when they are here. I HAVE NO LIFE. I WANT TO GO HOME and love my husband, grown child, his family & my two grandchildren. Misery. She has no quality of life. None at all. It hurts me to see her the way she is, In my mind, she died long ago and I am just looking at someone who looks like her. We cannot carry on a normal conversation and she can’t hear well. I would be honest in saying that I have prayed recently for God to take her out of her misery. I feel guilty and I realized that is a selfish thing for me to do. Now, I pray that God’s will be done in her life and that He take me if I am not going to get to spend any quality time with my husband, our son and his family and my two Grandchildren as we are promised nothing. I had rather He take me, if that is the case, and my son will see to it that she is taken care of. There is NO solution or down time for me. I miss my husband, our family and our life. She refuses to move in with me and my husband because we will not let her smoke in our home and around the Grandchildren. It has been discussed three times in the last year. She will not consent to moving in to our home and if I put her in a Alzheimer’s facility, she will lose her home. There is no money to do so and I cannot do respite care because she refuses to be around any “strangers.” Maybe, I am not the selfish one after all. She will be 81 years old this month.
This should not be forced on anyone. To expect someone to do nothing else with their life for 10 or 20 years except feed, diaper and bathe someone else–and have no life for themselves–is beyond unreasonable. It’s a killer, who are we trying to kid that this is so rewarding?
This explains it all perfectly. This is my life. I’m a young caregiver. I’ve been caring for my mom for 7 years. I have 3 kids. There is not enough support in my area. But I would never have it any other way! My mom needs to be with us, her family!❤
We lost our home and savings due to dementia caregiving. We fell in between the safety net help. Thankfully, our grown children helped us. My husband was able to stay home until he died. I now live with one son’s family and care for my granddaughter while her parents work. Not the life I planned, but a good life. I am grateful and blessed.
Care taking is a delicate dance with a lot of stumbles~
I gave up college
I gained more knowledge caregiving
I gave up many relationships
I gained an amazing husband
I gave up dreaming of my life
I gained a life I never dreamed of
I’ve been “care taking” for over 20 years
Would I change some things … yes,
would I change my role?
Find your tribe
It takes a village ♥️
TRUE and some Family members have no IDEA the WORK involved and do NOT THINK to GIVE a relief a few HOURS or Days
and some WILL have the NERVE to SAY HOW it could be DONE . O have no regrets.It WAS a privilege for me to take care of my beloved Mother, She was pleasant and sweet ALL the time.
Work is easy when not doing it! I can’t physically lift my mom so have 24 hour caretakers, therefore, in the eyes of onlookers, I must not be doing much! I have very little time, scheduling 5 caretakers, handling all bills, worrying about what will happen when money runs out, spending time with my husband, children, grandchildren, and friends. Exhausted. Keeping the faith, just really tired and can’t seem to sleep.
Leaves a person broken. No help. Some caregivers lose mentally as well as financially. Socially as well. Rebuilding after the fact can be a nightmare climb.
Nailed this to a tee…my life in so many many chapters..medical journal all my life of all my entire family…GOd this person lived my life..with a few exceptions of here and there…but uncanny…true blue..except I people out at the end…tired of people..just tired…..
Wow Thank you for saying all that was in my mind for the past 26 years cargiving for my husband. I had no time or strength to tell no-one that cares
As my husband’s caregiver (12/23/14 to 12/23/17) I had to vacate my job to be 24/7/365! ✝️
These are the very points I bring up on other pages when everyone else gangs up and attacks someone for not taking in an ailing parent. It’s horrible.
Thank you for this article
Sadly true 🙁
I stopped working and really didn’t get out much with friends when I started taking care of my mom full time
Care giving is a major sacrifice. I gave up everything I had, literally, to move in with and take care of my mother in law for five years before she passed away. But I would do it again in a heartbeat! If you have never been a caregiver, you cannot understand.
While some of this is so very true… I am mentally and physically exhausted, it’s taking longer than I thought to finish with my degree, and there are more financial challenges then I was expecting but I would never/ could never start thinking it would be easier if my father was already gone. I’ll do what I need to take care of him until the Lord’s perfect timing calls Him home. Just as I’m sure most other caregivers would also.❤️
I understand. There were days I was so exhausted I couldn’t put one foot in front of the other…..but I had to push on. Praying for you!
“It’s been said that caregivers save the US Government billions of dollars annually. One wonders why there is not more help for caregivers.” The reason for this is in the statement. This saves the US government billions of dollars annually. It’s all about the money…..
I finally went back to college in my 30’s at night while working full time and taking care of my mom. Today, I am so exhausted all the time I have no idea how I did this.
True.. My life is on hold while I’m taking care of mom 24/7 and my brother left college so he can work fulltime to be my income.
I’ve given up job promotions because I knew I wouldn’t be able to handle the job and care for my mom.
It also took me a lot longer to finish university.
Excellent essay, Bob. So true on so many levels.
All true. It’s a huge commitment, and hard on families. Really weigh your options, and consider how it will affect everyone’s lives.
I see myself in these words…and, I worry what my future will be.
This is true
This is all so true, caregiving is the hardest thing I’ve ever done
You love the ones you take care of but it’s extremely hard to work, juggle everything and there’s sure not much down time.