This is my first question, and I’d like to start by saying how much I appreciate everyone’s transparency. In two years, this was the first time I actually felt like someone else understood my situation—I found this forum by chance and I’m so grateful.
My father was my mother’s sole caregiver and he died suddenly of a heart attack. I immediately left my dream job, favorite city and beautiful home to care for her. She’s paralyzed from the waist down, and she’s “max assist” meaning she can’t get up on her own. She has a catheter and wears diapers, and when I first arrived we were in the ER every other month. She never took care of herself and gets defensive when people try to help. Caring for her has been exhausting and quite traumatizing for me, and I can see the ways it’s aged me on my face.
I finally decided that it’s simply too much. I worked so hard to leave this abusive family and start my own life, and now I’m back in the very place I left. I’m often complimented on how selfless I am, and how great it is that I care for my mother rather than putting her in a home. But to me those aren’t compliments, because not everyone can uproot their life to care for a parent or loved one. I’m hanging on by a thread myself.
The best part is that my mother has chosen where she wants to be, and she understands how hard it’s been on me. She’s also thanked me for coming here immediately and helping with funeral arrangements, home repairs, and for getting her healthy again. In fact, the doctor once commented how great her blood pressure was—but now MINE is high, and it never was before. Irony. Truly.
SO *deep sigh* my question is—has anyone ever noticed a decline in their own health and chosen to step away from caregiving? Please tell me what your life was like after that. I’m so curious to hear everyone’s stories. Additionally, all of you are amazing, and I’m so glad there is a safe space we can all share with people who actually understand. Thank you so much.
He passed away in a beautiful place. He didn't suffered. There was an RN ready to assist. At home, I think he would of suffered and it would of added trauma in an already horrible situation.
I am at peace. I pray one day someone will give me the same level of care he received. Your Mom's care can be even better in a facility. One person cannot do it all.
Of course your mom is grateful, whether capable of expression of that or not. But that isn't the question when a situation isn't doable.
I don't qualify to answer you because I knew I could not take on the care and never attempted to. When my brother was hit with a diagnosis of probable early Lewy's Dementia I had been lifelong a nurse. I loved caring for my patients, many of whom were elderly and suffered various dementias. I was well aware that no matter the love I could never in any way sustain doing that care:
1. without 24/7 help
2. without working only 3 days a week with 12 ill days and 5 weeks vacation.
3. without getting rid of my own family, job and any other activity of normal human daily life.
It's simply time to understand that there is no reason for guilt; you didn't cause this and guilt requires causation. You cannot fix it. And you aren't God. You are a vulnerable human grieving for your mother and for yourself. It's time to discuss with mother the hard truth. Then to seek best placement given assets and circumstances.
I am so sorry. If you're new to Forum you can read and your question will be answers. There are many who are mirrors of your situation before, during and after.
I wish you the best.
I hit rock bottom and was almost driven to an act of desperation on myself. Then with the help of my former husband (who is my current one again), I began to claw my way back to being myself.
I had to walk away from my mother's weaponized neediness, manipulation, gaslighting, and abusive behaviors. A very wise person on this forum once said pertaining to caregiving that at some point, it's us or them and you have to choose. That's God's true word right there.
So, I put myself first and turned my life around. I have many years in caregiving, but I will never be a caregiver ever again to anyone. I share my knowledge and skills to benefit others and thats why I'm business now.
My mother has homecare now. She knows the choice is make it work with them or it's a nursing home.
After a over a decade of propping up my parents , while my mother refused to allow hired help to come in the house , I eventually placed them individually at different times when each one reached the point they needed 24/7 care .
During that decade I only worked part time .
Since the caregiving has been over , I now regret working only part time for so long as it impacted my retirement savings . It also affected my mental and physical health . I should have stepped back sooner to attempt to force my parents to hire help . It’s taken me time to rebuild my life , but there are lasting regrets and health issues .
You did the right thing stepping back , I’m not surprised at all that Mom’s blood pressure is better than yours .
She finally moved to a retirement home to another city toward the end of last year (2024) and my sister is now the primary caregiver.
After she left, I felt liberated and made plans to return to my former city, I listed my home in the spring (2025), and then subsequently took the listing off. Why? The market timing wasn’t great; however, I mostly just felt/feel tired and scared. 10 years of being a primary caregiver has had a negative impact on my mental health. I’m not the same person anymore.
I am working on increasing my tolerance for uncertainty, and want to try to move back again in 2026. I hope that I have the strength to successfully/skillfully do it as I don’t want to stay here in this city that I have come to associate with caregiving. If I can’t manage it, I will be very, very kind to myself and still try to be happy, I hope that I can, though.
A friend recently told me that I had done a good job helping my mother over 10 years. I would never make that choice again as it was too hard on my spirit. As Leonard Cohen wrote: ‘It’s either me or you’.
I was his sole caregiver for almost 5 years and by the end of that time I was breaking down mentally and physically. I was so tired I couldn't think straight.
I consulted with an Elder Law Attorney which was a helpful first step. Then I started actively touring local assisted living facilities. Finally found one that had a vacancy, was affordable (kind of) and had satisfied long term residents. Got my husband admitted (thankfully husband was cooperative) and moved my husband in.
Afterwards I kept waiting for an immediate sense of relief and nirvana to wash over me, but that didn't happen for quite some time. At least I felt almost no guilt because I knew there was no other choice. It took about 6 months to get over the intense exhaustion.... I'm Very fortunate to have (kind of) bounced back. Actually, not sure whether I've bounced back - - but I feel better. And husband is doing well, too.
Good luck and best wishes for your release from caregiver prison.
I have been the caregiver for my husband for 10 years. He suffered a stroke at the age of 53, which caused traumatic brain injury. Taking care of him is like taking care of an infant that weighs 165 pounds. He can't walk, talk, eat solid foods, and is in diapers. Initially, I was strong enough to manage his care, but it has worn my body down in ways I could never have imagined.
I would love to find a nursing home to care for him, but he "hits" caregivers. He's not really angry or aggressive, he just doesn't have control of much but his one good hand, and it goes wild. CNA's have quit on us, I have trouble finding any in-home help, everyone just wants to sit with him and watch tv, with No hands-on help. But they don't understand, that he yells for help constantly, and tries to get up out of his recliner/lift chair, which will land him on the floor if someone doesn't intervene.
You Can Not manage this on your own! You need to find a care facility to manage your mother's care needs! Especially given your relationship and your feelings about it!
I'm just trying to find respite care for my husband so I can get a break, hopefully to allow my body to heal. He's so difficult, no one wants to deal with this. I get it, I wouldn't want to do this either. But I have no choice.
You are no good as a caregiver if you can't take care of yourself! Take care of you first! And find satisfactory care for you mother in a care home.
In retrospect, it was dumb to wait til I broke. If it’s too much, for goodness sake stop. And if you are damaged already, know that healing does happen but it takes a while. You’ve been through a lot. That’s real. The pain of the whole mess is real. You don’t have to pretend it’s not. And you don’t have to be stuck there forever either.
I had some health challenges along the way. Caretaking is hard on you especially when dealing with a toxic family members. High blood pressure and heart issues from the stress of it all is what happens to many of us.
When his mental health started declining he began making threats to my family and himself. I have never dealt with dementia before and had no idea how bad it was going to get. Over the course of 5 years I couldnt do it anymore and he was admitted to an ALF. My life got even worse. He started calling APS and the cops on me about things he was totally making up. I was being incestigated over false accusations and eventually because he was doing the same things to the facility he ended up being forced out of there and into a locked memory care. I try to visit but to be honest I am in therapy over it all. I developed high BP, CRIPPLING anxiety and I am now to this day trying to work through it all. I have a fear that he will be released and I will have to deal with him again. I have remained POA for the simple fact that he has alienated every one else YEARS ago so there is no one else. Luckily the facility he is in understands my feelings about all this and they only call me when necessary. Everytime the phone rings and I see its them I have a heavy feeling in my chest and go into panic mode. Its absolutely the worst feeling considering this is the person I was so close to as a kid. I dont know who he is anymore and unless everything is about him he wont really talk to anyone anymore including me. I keep showing up but I am never surprised when I hear about a caregiver dying or having a breakdown before the person they are caring for. As terrible as it sounds I am almost looking forward to the end as my life will basically continue this way until then. I miss so many things about my old life.
My health has been bad this year. Seriously considering Assisted Living. My husband has early stage dementia, and the changes have become more obvious and I'm not healthy enough to care for him.
Otherwise, it felt great to not have caregiving responsibilities (home health aides kept an eye on him) while I was hospitalized. After my mother died, it felt like a huge weight had been removed. If I have regrets about being a caregiver, it'll be easy enough to think about the friends who've helped. Family is not a factor to even be upset about-annoyed-sure, but they aren't going to change-best to move on and not have them in my life.
We have changed (I) everything in our lives to deal with this beast. We moved from our retirement home in the tropics back to where our children were (they asked us to). I had to retire at 64 (sounds fine right, but I planned on working until I left for my burial plot). Sold all the furniture, bought another house where we used to live, etc. etc. Did all that in the 1st year. Now, he never sleeps at night, all the drugs give him extreme hallucinations (so he takes NONE), he most often doesn't know who I am (but makes a point to ask me out and see if I'd marry him), and he hides everything. I have to go through all the cabinets and dressers each morning to find all the stuff, especially the food. He started the stove one night and I woke up from the gas smell. He has flooded the bathrooms and master bedroom by leaving the faucet on and closing the stopper. He cannot write, can't sign his name, doesn't know his last name, and really has no lucid times any longer. But I just can't give up on him. One of the major reasons is he is 6'5" and I envision every aide out there fighting with him to move him around. He will not understand that at all. And more, even through all of this journey, he has never said a mean word to me nor treated me with anything other than kindness. So far.
The only thing I know for sure is that I will not be able to move him around when he is immobile. He towers over me and weighs alot more. I already constantly have enflamed miniscus' in my elbow, wrists and shoulders just from the things I already do. And did I mention I cry all the time? I don't even know why, I just do.
I have hospice coming in 3 days a week (they offered 5) to help. That just started so I am unsure how much help that will be. But he loves the company. Yesterday I asked them to take him for a walk around our yard (its big). So while they were outside I waxed the hardwoods which sounds crazy but I loved putting on some music and just being normal for a bit. Well...and the floors look great.
So I have no idea how this will change or end. All I know is this is the beast I now know and whatever comes, I'll try my best.
Good luck to you. It is all hard and no one can go through it and be the same. Each of us have to do what best fits ourselves. There is no shame in that at all. And as far as who will we be after? I think we will be a smarter, wiser, and more compassionate version of us. I will take that and be thankful.
stressful and can definitely impact your own mental and physical health. There is no “romanticizing “ the task of doing this. So many of us have been consumed by guilt despite doing everything humanly possible to sustain the situation. And we also flog ourselves thinking we are being selfish for wanting to preserve our own selves and wanting to live our own lives burden-free of this. And I use the term burden because bottom line, that’s what it is. And each individual situation factors in so many different things. Unresolved parent-childhood issues, siblings who are either unable or unwilling to help. The list goes on. Bottom line, I had to step completely away when my mom needed significant care. I remember making a phone call from the lobby of her independent living apartment asking a caregiver to please start the next morning and take over, as I was gonna totally lose my marbles.
I know something that many other people can relate to is the “loneliness” of dealing with this on your own without help from any brothers and sisters. My brother has a neurodegenerative disease and also lives out of state. I have also chosen to not include him in so many of the details or antics of what goes on as to spare him since he is looking down the road at significant difficulty himself. All that just means that I don’t have a brother I feel like I can call and say, “WTF” in the midst of managing the current situation. But life without hands-on care-giving has been a gift to my mom, and, I’m gonna be honest here, a REAL GIFT to ME!!!
Preserve yourself. You are not selfish, you are trying the best you can, and your life, health and future are valuable to you!
Thinking of you.
99.99% of us have experienced 'a decline in their (our) own health' - and either stepped away or made arrangements to change our commitment / day-to-day schedule (to whatever degree is desired or mentally and physically needed).
Do not wait until you have a breakdown.
I have a different definition of 'being selfless.'
To me, it means taking care of YOUR SELF first to be able to take care of another.
It means being able to set clear boundaries on your time, energy, abilities.
It means not getting to the break(ing) down point and then not being able to care for yourself or a loved one.
Your mother isn't an easy cookie to deal with - realize she is frustrated, scared, angry, depressed and more. This is NOT your problem to solve. You are NOT her punching bag (unless you put yourself in the line of fire - and accept it).
Learn to set boundaries (and you are by writing us here - good for you).
Get into therapy.
My suggestion / advice:
Leave the situation ASAP.
* Hire caregivers
* Hire a medical social worker to manage care (and caregivers) and report back to you if you want to be the lead (if you can legally; depends on how you or your family / mother has set up her care).
* 'go back' to your profession. Once you get out of a field for too long, it may be impossible or very difficult to get back into it. Don't let this 'time' opportunity pass you by.
* Realize you are entitled to have your own life and self-actualize.
* Knowing your limits and abilities is essential.
* Know it is OKAY to feel GUILT or like crap 'framing' your decisions based on what you felt you HAD to do. You do not have to do it any longer. You will need to work through guilt or whatever inner messages you are telling yourself. A therapist could help you sort through it all.
- You have found out that you are not 'cut out' for this type of work. Or you physically and mentally can't take it anymore.
There are other ways you can involve yourself, i.e., do the work / profession you love and provide some financial support (or support in other ways).
* Don't beat yourself up for realizing that this is too much. You can burn out and acquire any number of mental or physical conditions (anxiety, mental breakdown, exhaustion, depression or more or worse. This is WHY you need to HONOR yourself and what you can and want to do.
Know it is 100% okay to not want to do this work (anymore).
Your heart is in the right place. You care and want to do what you can.
You need to get back to your own life and 'help out' / support in different ways to support your mother. First though it taking care of you 100%. Here's a hug.
And, no, I didn't care for my parent(s) in this situation. The situation did not present itself. I did though become a fiduciary for my friend of 18 years who had NO ONE else to help him. Six years (last. two in a nursing home). While I was / am able to set boundaries and know all about self-care, it was challenging for me, too. The key is to find your village - friends, church, paid professionals.
Gena / Touch Matters