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.
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.
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.
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.
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.
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.
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
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