I am VERY tired of people telling me I'm such a good daughter for caring for my mother. That I will be "rewarded" one day, in some... non existent magical way. There's NOTHING "rewarding" about watching the person you love most in this world, slowly rotting. Because that's what it is: she's not "fading away," peacefully. She's rotting. There's no dignity, nothing. There's definitely nothing good about any part of it. It's soul crushing, life destroying, mental and emotional torture. And I'm facing possible years more of it? Years more of way worse than it currently is, and I CANNOT stand it, anymore. I really can't.
I'm glad that my comments helped you. I'm taking care of my fourth family member with dementia. So yes, I do get it, and I hope to see you here again.
My mom told me I'll get the biggest mansion in Heaven. I'll be getting it sooner instead of later if she keeps working me to death.
I wanted to try and explain my situation a bit better, but frankly to REALLY explain it, I would need to write an entire novel. And for that, well, I don't have the time, and I wouldn't want to impose on anyone else's time to have to make them read it...
BUT, to be short, at the crux of my problem, is that I am NOT in America. I'm South-African. I joined this forum because I was desperate to talk to people going through the same things that I am going through. However, searching for something similar to this website, based in my own country? Lead me nowhere. So, I created my account nonetheless. Though, as it is, I can obviously only vent, on here. There are no resources or help at my disposal.
Me and my parents are "state patients," here in wonderful South-Africa. Which is to say, we are dependent on public health "care," and also everything else that is state owned and ran. What that boils down to, is, well...to put it bluntly, public health, here? Is basically the worst horror movies you've seen your entire life, all rolled into one, multiplied by about a hundred... And, like I said, that's just the tip of the iceberg, but I just wanted to point out that the suggestions of help, unfortunately won't help me. I mostly just want to be able to talk to someone else.
I do hope it's okay for me to be on this forum, despite not being U.S based, myself.
Ask them when they are coming over so you can “ reward “ yourself with a day off .
I bet they won’t say it anymore.
With all due respect to you, I did in-home caregiving for 25 years as my employent. Many of those years were through homecare agencies.
Caregiving part-time for a little extra money maybe can be rewarding. When you have to make a living at it, that changes it.
I've had clients who were nice and we had many good times together. Those are the clients who only need some companionship. There's no actual work involved. Trust me, there's nothing rewarding about having the contents of a soiled diaper thrown at you by a stubborn, demented elder who doesn't want to change. Now factor in the verbal abuse along with it. I've had too many of these people on my service to use the term rewarding.
Big primary thing I did consider my responsibility, and gladly took on, was seeing to the care and rehoming of her cat.
There is still a societal expectation to care for a parent . These people are perpetuating it.
As for my mom, Ive learned so much , about me and my family dynamics, I wouldnt trade what I've been though, except maybe, that it took me so long to learn.
You don't have to do it anymore. Put her in LTC or bring in more homecare staff. There's options. You have choices.
Someone wisely said, 'Don't light yourself on fire to keep someone else warm'. This is true. What happens to your mother if the stress and misery of caregiving causes you to get sick or have a heart-attack? Something like 50% of caregivers die before the person they are caregiving for. Your mother wouldn't want that for you.
Look at your options. Don't be guilted into continuing in caregiving when you didn't do anything wrong. Good luck.
He hasn't wanted to get out of bed since July 2024. The procedure of hoyer lift to wheelchair is too painful.
The waves between good days and bad days is the worst roller coaster ride. I'm sure for him as well as me. On the good days he gets mad about being turned, cleaned, diaper changes. He recently tried to whack me on the side of the head. First time and hopefully only time.
I want the good days without complaints, but that's not possible.
It's been 26 months since non ambulatory, and no, it's not rewarding in the least. I love him, and have gotten in home help. I will get more help as his needs increase. It's laborious. That's why it's called Labors of Love.
Yes, we've been duped. Yes, we are all tired of how we are portrayed in media, or by the government, or by various and sundry who drop in to tell us that their last trip to Europe with their beloved spouse brought them joy and happiness before spouse lapsed into a coma and died. And it was worth every minute of the last ten years that they provided care for them with no help from family, after quitting their job, and getting ulcers, or maybe cancer.
Now I'm going to tell you what people insist on telling caregivers: get therapy. Or maybe "take care of yourself." (They don't say how, or at least how in any doable way when there's no one else to take care of the sick person while we run off to Hawaii for two weeks but have to return home early because dad is in the hospital - again.)
I'm so sorry for what you are going through, but you've come to the right place. We have been where you are. Look down and you'll see our weary footprints. Look at the face of your mom and you'll see the worst problem you've ever encountered, and we've seen that problem in our own loved ones' faces as well. Look up and you'll hear a million fervent prayers for help from a God that we are not sure exists anymore. Because God wouldn't give us more than we could handle. Right? The next person who tells me that, I'm going to smack them, though generally speaking, I'm totally anti-violence. Or was.
Speak out and speak loud. Change public perception of what family caregiving really is. Contact your government officials, the Veterans Administration, your church leadership, and oh, write articles (that will probably never be published by the AARP because they're promoting multigenerational living as a solution for families with aging members, and that's unsustainable for most).
Please tell us more of your story. Take heart from our helpful advice, which is meant to get you through this without losing your mind. Welcome to the Forum, AnthsGirl!
While keeping someONE at home and caring for them is a great idea sometimes it is not possible.
Now you are caring for TWO people. That can make it even more impossible.
You might need to do a little research to dee if you can't figure a way that will help all 3 of you.
First...are either (or both) your parents Veterans? If so the VA may be of help. They may be eligible for benefits and you may be able to get paid for caring for them.
Second.. Are one or both of them able to attend an Adult Day Program? If so that would get them out of the house and you would get a break. I can't tell you how great having a few hours each week where I did not have to worry about taking care of my Husband was. I could get things done knowing he was safe.
Third...Check with the Senior Service Center and see if either or both qualify for any programs/grants they may have. there are some that will cover caregivers for a few hours each week. And other programs that may help
Fourth...REALLY seriously think about hiring caregivers that will come in and help you. They can take care of mom and dad, do light housekeeping, meal prep as well as other personal needs for mom and dad.
Fifth....If either or both might be eligible for Hospice PLEASE call and ask for a consult. With Hospice you would get all the supplies and equipment that you would need. A Nurse once a week to check on them and order medical supplies. A CNA would come 2 times a week to give a bath or shower and order personal supplies. You would also have a Chaplain and a Social Worker on the Team. And you could request a Volunteer that could help, they can sit with them, do other tasks that can help you in a variety of ways. (and Hospice does not necessarily mean "6 months or fewer" as long as there is documented decline that meets Medicare guidelines a person can remain on Hospice)
Sixth....REALLY REALLY seriously think about placing mom and dad in a facility that will meet their care needs. this does not mean you have "failed", "given up" what it means is that their care is more than you, one person can manage at home. You have to consider your safety, their safety, your mental and physical health.