I hate caregiving and feel guilty...


I have no life. Sure, I can steal brief moments when the aide I hire for mom is there, but my life is constant stress and endless responsibility. A facility is not an option, except for brief respite stays, which mom hates. And even if she were in a facility, I'd still have to check up on things and be there for her. I'm having to accept that my life is basically over. Yes, I've tried antidepressants, and they do not work for me and have awful side effects, so they are not a solution. I'm trying to find peace with this is my life. How do you handle it when you realize that your life is caregiving and not much more? I know that some day I will miss her terribly, but right now, there is no way out, no reprieve.

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OnlyChildAlone, this is a wonderful safe space to share the truth about caregiving.

I do little for my mother. compared to others on this site. But I very much hear from people in real life how they sacrificed for their "dear mama" (it's usually the mother) by moving in with her, moving her in with them, etc. And often there are/were siblings who mostly do/did nothing. And they often look at me askance when I'm honest about how I will NOT do these things.

Some people are cut out for caregiving. Many aren't. The biggest problems are often when the ones who aren't cut out for caregiving are forced to do it.

And yes, I had someone tell me that blessings will come to me if I did and did some more for my mother. I looked at that pious person and told them that my child DIED, so don't tell ME about BLESSINGS. She said nothing further.

My mother thinks I should be doing a whole lot more for her than I do (I don't live with her; she is local, though, and shouldn't be living alone but refuses to consider assisted living or to have help come in other than a cleaning service). She insults me, is unappreciative, and doesn't even realize how much TIME she takes up when I have to drive her around.

Still, though, this is nothing compared to what so many others on this site do, including you.

I feel you. I really hate all the platitudes I encounter online about how this is a blessing, about how I'll grow as a person, learn compassion, how I'll look back on these days fondly, how this is a fabulous opportunity to bond with my mother, how I'll miss these days and her after she's dead. It feels like I have ZERO support!!! I HATE being in this position. I HATE that this is my life. I HATE having no other choices. I essentially got divorced and moved into a house with my mom to help take care of her. I completely understand the feelings of being trapped and getting no reprieve. But what's worse is the overwhelming EXPECTATION that I should feel...happy? differently? about this!!! I loathe that every support forum and facebook page I've tried is some weird cultish worship of being a caregiver. There is no safe space for these feelings.

I hear you Dana. Two yrs ago I had to quit work to care for my mother full time when she suddenly stopped recognizing me. Since then I have not left the house for more than a couple of hrs a month. Around the first of this yr I started getting a sitter but she is only here 4 hrs a wk and all that time is spent looking at assisted living facilities, even though I'm pretty sure we can't afford them. I thought that would give me hope but really, it only depresses me more :( So I'm sorry, don't have a lot to offer other than I know fully how you feel. Gotta go, mom is wailing and trying to get out of bed. Love you.

Dana - I am the 80 year old caregiver for my 105 year old mother. She is in a nursing home. There is no possible way I could ever have looked after her hands on. I still look after financial matters, consult with staff and doctors, replace broken hearing aids, buy clothing etc. but I have a life of my own as well.

If your mum were in a facility, you would have many more choices of what to do with your time. I can take weekends and holidays with sig other. I can take days when I sit around in my pjs if I feel like it, and don't answer the phone. I can visit with my grandchildren...

Please realise that your mother will be fine in a facility. You do not have to choose a life of servitude to her. Your responsibility is to see that she is cared for, not necessarily to do that caring yourself and you also have a responsibility to care for yourself.

Your daughter needs you to be able to be family for her, not just plan how to off yourself. You need a life of your own. Caregiving your mother has sucked you dry. Time for change and to put yourself first.

If your mothers income is too high for Medicaid, you have an eldercare attorney set up a Miller Trust.

You sound deeply discouraged, depressed and suicidal. What will happen to mom when you're gone? She'll be in a facility with NO ONE to advocate for her.

You write that in a nursing home all she does is "she just sits in her room all day. " What does she do at home other than sit somewhere in the house all day?

I woke up at an ungodly hour thinking about your situation, Dana, and I'm glad others have visited this thread while I was asleep. Some even said almost the exact words that were forming in my mind. You're too depressed to see the light at the end of the tunnel. Everything looks like blackness up ahead. You've given up on your own struggle, not only now but into the future.

You're in a situation that is life-threatening to you. You need to find a way out of it. Yes, if you put Mom in a nursing home you'd still have to visit and take care of stuff for her. But you'd be able to find yourself again in the time you'd have away from her. I didn't put my mother in a nursing home (yet), but I moved out of her house and moved somebody else in. A neighbor lady who is a close friend of mine, needed a place to stay, and was willing to look after Mom in return. I still handle emergencies, and take Mom to doctors, shopping, errands, etc. But I don't have daily contact, and that has lifted the weight of anxiety and (in my case) anger and agitation off me and allowed me to reinvest in my own interests, plans, and activities. You need to do this too. Don't give up on yourself. Your mother's life may be over, but don't throw yours away too out of guilt, compassion or a misguided sense of obligation. SueC is right. You don't need meds. You need your life back. Please think about this.

"... unless I'm lucky and get cancer." I got a chill when I read that, Dana. Is that really you saying and thinking this, or is this the exhaustion and burnout talking? And your daughter, what does she think about your having given up on your life? Would you be OK with her doing what you're doing, say for a MIL?

IMHO, "promising" a parent that you will never put them in a home is a death sentence--for you. I have worked for people (In Elder Care) who had made deathbed promises to dad that they'd care for mom at home, forever, Flash fwd 10 years, mother is end stage Parkinson's, developing dementia, is incontinent (both ways) can't walk without aid, can't made sound decisions, basically, the whole family is held hostage to the 24/7 needs of one person. Family is grieving with the guilt of having no option but to put Mother in a home.

I had the option of walking out the door at the end of my shift--family she lived with did not. It impacted the marriage, the family immediate family dynamic and the extended family dynamic. This situation alone cemented in my mind my absolute firm desire to not ever be a burden of any kind to my kids. I already know I will be caregiving for my hubby as his health is not great now--but I will be left alone, almost certainly, and I want to do it with dignity and grace. If that has to be in an ALF someday, then so be it. I will NOT do to my kids what I see so many people do to theirs--guilt them endlessly. I'll accept "help" but I will not live with any of them. (And the sweeties have ALL offered--which, since I am only 61 and still babysitting a ton for them probably doesn't seem so bad to them!)

We raise children to be independent and then we need to let them be so. My kids owe me absolutely nothing but to be good people. I know that living with ANY of them would result in heartache and anger and suffering. We don't have children so they'll look after us in our dotage.

Your choice is obvious to keep mom in your home, despite the obvious pain and misery you are in. Talking suicide? Your life is worth so much more. I think you've hit absolute rock bottom. Please get some more help and try to get out and away from mother for a few days a week, if you won't consider placing her.

If you don't take care of you, nobody else will.

I don't mean to sound brusque--I'm just so sorry for the many, many people who seem stuck in this cycle of guilt.

Sue, I too, thought about how this is affecting Dana’s daughter to see her mother so stressed and unhappy. This must be awful to watch her mother suffer so.
Dana, recently I read a post on this forum about a woman who had already had to be a caregiver to her husband for years, and had envisioned many, many more years. She said she had begun to live waiting for the end, and was feeling pretty much like you are. She decided to stop waiting to live her life when her caregiving days were over and to look for ways to reclaim it even though she was limited by her caregiving duties. Little by little she did so and found more meaning and happiness in her life even though she was still caregiving.
I have though a lot about her post. Because it’s what we do as humans. While in a difficult, long-term, stressful situation, we soldier through with our eyes on the time when it will all be over, and we lose our joy, and our energy, because we can’t live in the future - we can only live in the now. This lady made a decision to do just that and was happier for it. For me, I understand it as being able to benefit from God’s grace, power, and peace, only in the now and trusting that there will be more, in the next hour, and day, and year.
My caregiving journey has not been the same as yours, but throughout my life I have had many experiences in which I found myself suffering with no end in sight, or if I could see it, the end didn’t look any better! Taking my eyes off the end, and asking for God’s mercy and grace just to get through one day (or sometimes one hour or minute) at a time brought me peace.
You seem determined to take care of your mother in your home. I am just concerned that in doing so, it has brought you to a point in which you see no joy in your present or your future.

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