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I'm 15 years into caring for my mother. I'm 62 years old and in very good health considering the daily stress of caring for my 94 year old mother with dementia.


I used to work but the lost the job I loved as a result of the covid shutdowns and my daily caregiver ran for the hills never to be seen again. I've patched together a few hours each week to have sitters so I can get out a little bit.


I work as a personal trainer a couple of hours each week but it's hard to find clients as an independent trainer who has very limited availability.


My only sibling is dead. My now-deceased ex husband left me 8 years ago. My 26 year old son constantly talks about how I obviously don't want to work or I would hire a full time sitter and get a job. In his opinion all I want to do is sit around the house. My 28 year old daughter has told me that she will never be my caregiver should I need it. She will not put me in a facility but will hire full time help so she can continue with her life. (I haven't asked either one of them to care for me.)


I've never felt so isolated and imprisoned. I have no social life or close friends any longer. Everyone has moved on. I'm not even able to go to church because I can't leave my mother and don't have a Sunday morning sitter. I haven't had a vacation since 2012. I have only had 2 nights out of town in the past 6 years. And now my children want to punch at me by insinuating that I'm lazy and don't want to work.


I told my son that I don't have to justify my worth to him and that this caregiving gig is very difficult but he has all the answers. I try to rise above his thinly veiled insults but it's almost impossible and really brings me down when what I need is support.


I pray constantly and do my best to avoid sinking into a full strength depression but it's a daily battle.

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I’ve worked with children with problems for over 20 years. They are usually unable to communicate properly, or unable to understand or verbalize their own feelings.

Honestly, your kids kind of remind me of them. Your daughter sees. She knows what you do, and she’s telling you that she can’t stomach it. Can’t blame her for that - caregiving is not easy.

Your son is worried about you. He’s throwing knives as a means to goading you to change. He just don’t understand that it’s counterproductive. And that, if you’re working just to pay for a sitter, you may as well be at home.

Your problems all stem from a lack of communication. What exactly are you saying to them? Are you asking them for help? Just to hear your problems? What is it you expect from them in return? Most people if you tell them your problems will try and help and find a solution (unless of course you announce that you ‘just need to vent’). I think you need to be clearer to your children about what you need from them. Perhaps not physical support, but mental support. A hug. A ‘keep it up, Mom.’ Have you told them what you need?

You’re a grown up, as are your kids. It’s okay to say to them, “You may not agree with me caring for your grandma how I do. You say you won’t do it for me one day, fine. All I’m saying is, I love you, and I care about you, and I want you to be happy. Can you say the same about me?”

You all need to get back to the basics and start sharing your feelings with one another.
Helpful Answer (13)
Reply to Lizbitty
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Your children have watched you ruin your life for the past 15 years caring full time for your mother, in their estimation. You have no job as a result, no social security quarters saved up for your retirement, no social life, no marriage, no friends, and this is what they see, which probably scares them. Your daughter is petrified to find herself in this position, so she tells you she won't care for you herself but hire carers instead. Which means she'll need a lot of money bc full time help is excruciatingly expensive. Your son sounds like he's trying to goad you into getting back into life and out of this self imposed isolation and imprisonment you mention you're in. He doesn't agree with the life you've chosen for yourself, as noble as it may be.

Consider placing your mom now so you can get back to living a full life, as you deserve. Take Lizbitty's advice about opening up a better line of communication with your children and telling them your feelings. And know that 15 years is long enough to have provided care for mother. It's time to look after yourself now, don't you think? Your mother will also get a good deal of socialization and daily activities in managed care, which she may wind up enjoying. It can turn out to be a win win for ALL of you, in reality.

Good luck to you.
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Reply to lealonnie1
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Is it possible that your children are actually distressed at seeing you so isolated, stressed and distraught?

Your mother's resources (entitlements, pension, SS, savings) should be paying for her care. Is she on Medicaid?

Have you contacted your local Area Agency on Aging to find out what resources she might be entitled to?

I know there were times in my life when my mother wasn't responding to gentle suggestions and direction when I used insults to get her attention. It wasn't they way I wanted to proceed, but she was making stupid decisions and that's what I told her. It made her change her course of action.

Maybe that's what YOUR kids are trying to do.
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Reply to BarbBrooklyn
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I share the strong feeling that your children are worried about you.

Can you say a bit more about what happened with Covid? You've been your mother's primary caregiver for 15 years. Had everything nicely organised, working at a job you enjoyed, good support from a reliable caregiver. Then bam! - no job, no caregiver, and now instead of coping well you're feeling trapped, isolated and alone.

You are NOT alone. You are far from alone. I know how intensely irritating it is when people, just as your son does, "have all the answers," but I suspect he is afraid you've stopped looking for any.

You do not have to justify your choices, and in any case I am the last person to undervalue the work you are already doing, only this is making you miserable and it sounds as if the problems could be soluble. What kind of support structure would help you get back to the situation that did work for you?
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Reply to Countrymouse
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If your children have nothing but negative things to say to you, it's probably best you cut your ties with them, as they sound pretty toxic, and you certainly don't need toxicity in your life.
Being a caregiver is the hardest job any of us will do, and if your children don't understand that, tell them to come stay with your mom for just a week and see if they won't change their tune.
You need to make sure that you're taking care of yourself, and getting out and about several times a week to do something you enjoy. You can hire someone(with moms money)to come stay with her, so you can do just that. And as far as church is concerned, most if not all are still offering their services online on either YouTube or Facebook, so you can still watch it and be fed. So don't use the excuse that just because you physically can't go, that you still can't participate by watching online, as you need God now more than ever, as only He can sustain us.
You're doing a great job taking care of your mom. Don't let anyone tell you otherwise. Unless someone has walked in our shoes, they have no clue how difficult being a caregiver is.
I would also recommend "Googling" to see if you have a caregiver support group in your area. Most are still meeting in Zoom, which of course would be great for you, as you wouldn't have to leave your mom, and it can be quite helpful sharing with others(who understand)what we're going through as a caregiver. I know that my local caregiver support group saved my life when I was at my wits end while caring for my husband, so I highly recommend one if you can find one. I still participate on ours even though my husband has been dead for over a year now, as I want to be able to pay it forward.
So please make sure that you are taking care of yourself, as that by far is the most important thing you can do while on this caregiving journey with your mom. God bless you.
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Reply to funkygrandma59
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I cannot even imagine caring for someone for 15 yrs. I did it for 20 months and that was enough. I took Mom in but placing her was in the back of mind from Day one. I was 65 at the time. I was waiting for her house to sell and have enough money for 2 yrs of AL. In my State if you pay at least 2 yrs, Medicaid will pay. The house didn't sell but I placed her anyway with the money she had. I would say she was entering the last stages of her Dementia. She acclimated pretty well. Had a lot more moving around room.

I would think about placing Mom. There are nice places out there. Perfect, no, but nice.

You kids. Good time to sit them down and explain your finances. First, what you would make on your job vs the cost of a RELIABLE caregiver. Ask them to each take a day and fully care for grandma. You will take a day to yourself. They will see how hard it is to care for someone who has no idea what is going on. And if you were working, you would be coming home to this and probably getting no sleep at night.
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Reply to JoAnn29
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@Lizbitty
@BarbBrooklyn
@funkygrandma59

Thank you all so much for your input. I appreciate the suggestions and support!

Peace,
Cindy
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Reply to southiebella
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Your kids don't understand what the life of a senior caregiver is like. No one else does either unless they've lived in it themselves.
They just don't get the isolation. The depression. The anxiety and worry it causes when you aren't going to a job every day earning money for your own needs.
No one who hasn't done it can understand that a situation like yours is a type of slavery. Think for a minute about the end of Civil War. In the southern states all the slaves got their papers of manumission and were freed. Most of them stayed on the plantations they were born on or returned to master and mistress because they nowhere to go. They had no way to make a living to provide for themselves and their families. The same for a person who has been in years of caregiving. They're out of the workforce. Many have no spouse providing for them. They become isolated from friends and life that was prior to caregiving. Such simple every day things other people take for granted like going to the store or for a drive have to be planned in advance and can't happen unless the caregiver has arranged a sitter for the elder.
The longer a person is in this life the farther away their former lives get from them.
Really the only choice for you is putting your mother in a facility and going back to work. Then make your own care arrangements for your old age. Show this post to your kids. Maybe it will help them understand.
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Reply to BurntCaregiver
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I would suggest that you need to talk to a counsellor about your situation. Since you are isolated and communicate some ideas that scream "depression," you need to get some help for yourself. Please consider a counsellor that can do video conferences since you have difficulty finding helpers to sit with your mom.
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Reply to Taarna
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My kids can be incredibly thoughtless about me getting older--but time will take care of that!

They do not want to hear about their aging grandmothers, they do not visit them, or call them or have them in their lives at ALL. If I have had to be spending much time with my mother, I can't talk about it. The kids don't get it--b/c in their generation, EVERY problem is dealt with by hiring someone else to 'care'. They have zero 'empathy' and I don't know if I somehow taught them this or if they just do not care.

I have been primarily a SAHM--which actually embarrassed one of my daughters, who is now a SAHM and will never work---funny how life makes things 'equal'. She did accuse me of being 'lazy' more than once. But 15 years a 3 kids later, she never does.

I just don't ask for any help from them and expect none from them when I am in need.

And, really, they are great people. Just that one quirk--and really I think it's because they are NOT close to their gma's. My son actually asked if he 'had to' come to grandma's funeral if she ever dies. I told him I didn't care and he probably won't.
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Reply to Midkid58
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