Follow
Share

I can't be the only person on here who is afraid the person they are caring for will die. But my post earlier got zero comments. How do people handle that aspect of being the sole family caregiver? No one afraid of being judged? No one afraid they are not doing enough? No one loves the person they are caring for so much, they wish they could do more?

Find Care & Housing
James, I think you need some intense therapy. That sounds harsh but I do mean it kindly. From your other post and comment, your mother sounds like a selfish woman who has held you hostage to her care and impoverished you in the process. I suggest that you work with skilled guidance to learn some coping skills now so that you don’t fall apart whenever you do lose her, as well as how to do what you can now to rescue your own financial situation, develop a social life, and lessen your anxiety over your mother’s health situation. You have sacrificed a lot and deserve some kind of a life of your own, to the extent that you can. At 60 you should be looking forward to some freedom and enjoyment after all these years, not ongoing servitude. Can your mother move to some kind of a care situation to free you up?
Helpful Answer (7)
Reply to MG8522
Report
JamesG4Justice Jun 20, 2026
I have to be here with mom 24/7 except for short trips to the store for us. I go to stores 250 times a year. I spend my time documenting everything in between getting up and down for my mom. I have no choice but to try to preserve the estate. My enjoyment is the peace and quiet I have right now. I do not need nor want a social life. I have a chat room I talk to people, some of which I have known online for 25 years from AOL days. My existence has to be to transfer my will to live to my mom. Which I do everyday. I realize I am not a doctor and the doctors we go to, which are many, really are not responsible for the big picture. I am the responsible party. I just wish I could get backing officially from a doctor saying I am doing it right, in everything I do. 
(1)
Report
James,

As you know every person dies at some point. Many family caregivers find themselves painted into a corner by a parent who needs care. Usually this person was long groomed by a parent and kept impoverished and dependent on them through types of psychological abuse like gaslighting and other types of mental abuse like manipulation and guilt-tripping. I was in a very similar situation to you with my mother. So I know where you're coming from.

It's time for you to start making a life for James. Not mother and not anyone else. The first step in making that life is taking the best advice on this thread coming from MG8522. Get into intense therapy. If you find a therapist and are willing to put the work in that you need to, you'll be okay when your mother passes.

How about if you take one step today. Find some quiet space for yourself and think about what YOU really want for your life. I'm pretty sure the life James really wants in his heart isn't taking care of a selfish, entitled, mentally abusive parent until she dies. Then write this down. Don't show it to anyone because it's only for you. Then set aside another block of time and think about who in your life can help you work towards the life you really want. The start putting yourself first not your mother. Good luck.
Helpful Answer (6)
Reply to BurntCaregiver
Report
JamesG4Justice Jun 20, 2026
I have to care for my mom. I want to. I am not completely innocent in my life before the car accident that handicapped her in 2008. God gave me a purpose. And it was a fulfillment of what an Angel told me in 1978. I know it is hard to believe, but I have to care for my mom. The Angel asked me to in 1978, after I declined becoming a Priest. But even though I do everything I know to do, I realize I am not a doctor and the doctors we go to, which are many, really are not responsible for the big picture. I am the responsible party. I just wish I could get backing officially from a doctor saying I am doing it right, in everything I do. And part of that is philosophical, in that I transfer my will to live to my mom. I want the life I have now. That is why I do everything to give my mom the will to live. I like it quiet. No trouble. I could never handle money when I was younger. Failed relationships. Friends from age 14-40 based on "hanging out partying" with nothing else in common. But I am 60 now and the last 17 years 4 months have been a blessing to me and saved my life. My reward is in heaven I believe if I stay the course.
(1)
Report
See 1 more reply
James, I have some bad news for you.
We will ALL die.
And if you are caring for someone the likelihood that they will die is pretty high.
What you do is make peace with that fact.
You do the best that you can each day.
You provide the best care that you can.
You realize when their care is beyond what you can safely manage without help. You get the help you need and know that when it is no longer safe for you to care for them at home you find a place that can safely manage their care.
And when it comes time you allow Hospice to step in and provide comfort when there is no cure. (and I will tell you now that Hospice does not "kill patients")
None of this is easy but when you make peace with this, prepare for what will happen in 1 month, 3 months, a year...
As a caregiver we also forget about ourselves. You have to take care of yourself body, mind, soul. If you do not care for yourself who will care for both you and your loved one?

All you can do daily is the best that you can. No one can ask m ore of you than that. And if you do the best that you can you can put your head on the pillow at night and sleep well.
Helpful Answer (6)
Reply to Grandma1954
Report

James, I looked back at some of your older posts. I see that you used to post fairly often and then took a break for a few years, so I wasn't familiar with your background.

So it seems that you are determined to keep your mother at home out of love but also because if she needs to sell her house to pay for care, or has a Medicaid lien on it for after she dies, you will be homeless. And that she does not even have the decency to leave you the house in her will after you have spent nearly two decades in it taking care of her, but you plan to take out a reverse mortgage on it to buy your brothers out in order to stay in it. And that she has given a couple hundred thousand dollars to her grandchildren while you live in poverty due to having no job because you are at her beck and call 24/7.

I'll believe you that you are doing this by choice. But James, please wake up to the reality. I hope you will find some kind of employment that you can do from home during the down time with your mother. Many mothers of young children do this. Often people who post on this board work from home, although they are generally already established in their careers. And you need to insist that your mother leave her house to you, as minimal compensation for the hundreds of thousands of dollar of income you could have earned if you had been in the workforce instead of holed up in the house with her. Don't just take her word for it, go with her to her lawyer and ensure that she does.
Helpful Answer (6)
Reply to MG8522
Report
MG8522 22 hours ago
Oh, I should add, but it's too late to edit, you can't get a reverse mortgage unless you own the entire house. So one heir can't use one to buy the other heirs out. You could ask your brothers to quitclaim their shares to you, but if they don't want to, either one of the could force the sale of the house to get their share, and so you would lose it anyway. Plus if they do quitclaim their shares, that can have tax implications, and would go into their five-year Medicaid look-back, if they were to need it.
(1)
Report
James, I read your other post several times, and started to respond, but decided you needed far more guidance than anything I could offer. Many people come to this forum in a desperate situation seeking the thoughts of caregivers experiences. We so often see people fight back against the advice given, or they disregard the hard won knowledge of others, or it turns out they, much like the infant in a dirty diaper, are actually content to sit in the mess. I’m truly sorry for the accident and aftermath your mother has gone through. There’s not a world where I believe a mother should expect her adult offspring to give up his life to constant caregiving. There’s not a world where I believe this is some sort of cosmic punishment you’re receiving for not being a priest. There are no doctors who can tell you definitively you’re doing enough or the best job possible, that’s outside their purview. They see mom in a snapshot of time. Undeniable fact, mom will die, as we all will, and I fear for you then. Building your whole existence around this one thing, I cannot imagine where it will leave you when the one thing is gone. It’s wrong to think you don’t need community, we all do. Loneliness is brutal, it seems it’s taking a huge toll on you now. You cannot transfer a will to live. Mom’s body will wear out exactly when it’s intended to, completely out of your or any doctor’s control. I can only hope you’ll make changes now to anticipate that time. This is all said without judgement, just a real sadness for you. I wish you much healing and peace
Helpful Answer (6)
Reply to Daughterof1930
Report

James, a lot of us on here knew going in that we'd be caring for our loved until death, so I personally never dwelt on that and just stayed focused on doing the very best job that I could.
Did I make mistakes? Of course. Did I not do everything perfectly? Of course. But I did the very best I could and that's all any of us can do.
So just enjoy your loved one while they're still alive as there will come a day when you'll be wishing for just one more day to care for them.
Helpful Answer (5)
Reply to funkygrandma59
Report

Who's going to judge you when your mother dies at a ripe old age after you've devoted, literally, your entire adult life to her care and "transferring your will to live to her"? I hope you realize you need therapy because none of this you speak of is normal behavior, even though an angel instructed you to care for mom in 1978. I don't believe the angel meant to THIS degree and to exclusion of all else. We all matter in God's economy, including you. We've all been given lives to live to the best of our ability. Of course you've done a good enough job caring for mom or she'd have died years ago.

I hope you can take the advice you've been given here in the spirit it was intended. Get therapy before mom dies and your entire purpose in life is shattered.
Helpful Answer (5)
Reply to lealonnie1
Report
MG8522 19 hours ago
If you are 60, then you were 12 in 1978 when this angel supposedly told you to give up your life and take care of your mother -- after an accident that would occur 30 years in the future? I have a stronger faith than most people, but that really isn't credible.
(1)
Report
Hi, James. I’m sorry your earlier post hasn’t received any comments yet. Sometimes it is just the timing. It’s late now in most of the US and heading into a weekend so I think it just hasn’t been seen by many folks yet.

That said, I’m sure many caregivers are very concerned about the death of the person they are caring for. Not just because of the love and affection they feel for their family member, but perhaps also because of a legitimate fear of what will happen to them after the death. Will they still have a place to live? If not, where will they live and how will they support themselves, especially if they’ve been out of the workforce for many years and are exhausted and burned out? 😞

I will say I personally did not really have the feelings you mention. I loved my wonderful father very much but he was getting frailer and frailer and was ready to go to heaven. And after six years of caregiving (shared with my sister, not solo!) I was very tired. I also thankfully had resources so I didn’t have to worry too urgently about next steps.

I think a lot of caregivers may have felt similar to me when their loved one finally passed away as much as they may have adored them and still miss them now.
Helpful Answer (4)
Reply to SnoopyLove
Report

Hi James
like snoopy said, I’m sure it’s timing re your other post
As caregivers we’re looking after a loved one, and with elderly loved ones, inevitably watching decline and change. When my dad was ill I wanted to do everything I could to “save” him, to make him better.
i did ask myself your questions and having come through the other side, I know I couldn’t have done more, I did enough. I also know that when I asked myself these questions, I was exhausted. So please take care of yourself
i also found this forum amazing support, reading others posts also helped me through knowledge of conditions to experiences
take good care
Helpful Answer (4)
Reply to Moxy234
Report

Not all of us are cut out to see it to the end, even if we think we are; I'm in awe of the people who manage a home death. Even if that is your plan having alternate plans in place can alleviate your anxiety, not all of us can take that on even if we think we can/should.
My hope was that my mom would pass peacefully in her sleep, if not my plan was the hospice room at the little hospital just down the street. In the end the burden became to much for me and my mom spent her final months in a nursing home and in hindsight I'm grateful for that, though there were many things that grieved me about her life there it was still better and more appropriate care than I could have given her.
Helpful Answer (4)
Reply to cwillie
Report
JamesG4Justice Jun 20, 2026
At the very end, if she has to go to a facility for a week or 2, I think insurance pays for that. My mom want to die at home. Her car accident was Labor Day weekend 2008. A Catholic Priest hit her head on. The doctors at Shock Trauma worked hard to save her legs. They almost amputated one leg. And could not figure out what to do with it until around Thanksgiving. They took care of all the other surgeries before that. Then my mom suffered big time in 3 different care facilities, 2 in Baltimore, and then came back to NJ and stayed at Kessler up north. No one ever gave her a tooth brush. And she was flat on her back with leg fixators. She was withering away to death. Finally end of February 2009 she beeged them to let her go home. I had to sign a paper saying I would be her 24/7 caregiver, to let her go home not having yet stood or walked. I nursed her back to health once home, and the visiting nurses got her to stand and walk. But barely able to walk and in constant pain with severe nerve damage to her legs, I have remained the 24/7 sole family caregiver. Now a 88 mom is deteriorating a bit. Mind and body. But I am so used to caring for her, it is OK. All I want to a doctor to officially say I am doing it right. So there can be no blow back after it is over. Anyway, my mom never wants to go into a nursing home. Medicare will take everything. The house, the bank ad investment accounts, the works. My future lays in keeping my mom alive and preserving the estate.
(1)
Report
See 2 more replies
See All Answers
Ask a Question
Subscribe to
Our Newsletter