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.