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I feel horrible for thinking this. I don't really wish her dead! I just long for my life back. I long for days that dont include brushing someone elses teeth, sh*tty adult diapers and spoon feeding. I must be the worst daughter in the world!

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If you are the "worst daughter in the world" I have the feeling you are in a very long line.
Personally I would not want to live as my Husband did the last few years of his life, and if he knew what the last few years of his life would have been like I am sure he would have wished himself dead!
If you are the sole caregiver it sounds like you are a bit burnt out.
It is also difficult to watch a loved one s..l..o..w..l..y.. fade away. And often in pain. So no you are not horrible in your thinking, it is natural.
What you can do is use this as a talking point for your family. How do you want to be cared for if it comes to needing care. Do you want to "burden" your family or will you be willing to go to Assisted Living or Memory Care?
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You know, if we sat and talked I believe I would at some point ALSO hear that you are now subjected to a woman you do not know, who is NOT your mother, but someone else inhabiting the shell that was hers, someone unrecognizable, someone who is afraid and suffering and you are a witness to that suffering and can do nothing about it.
My brother was fully cognizant of his diagnosis of Probable Early Lewy's Dementia. So capable was he that he could assign me to be his POA, the Trustee of his Trust, could sell his last home with help of myself and a dedicated realtor, could move to Assisted Living where he and I could visit together when I could go there, and discuss what was happening, how he saw the world, what caused his hallucinations, what his fears were, his losses. He was SO AFRAID to go there. He died before he could. Got a cellulitis in his leg, went septic and passed quickly with Hospice. This is the man I loved all my life. The Hansel to my Gretel. The one who wanted nothing but good for me, who told me if he had a cent to his name I had a 1/2 cent. The kindest gentlest man ever. And when he died I felt relief. Not to have to see him suffer. Not to have to be afraid for him. Not to be afraid for MYSELF, trying to learn things I had no idea of, trying to keep him safe and assured, as he slipped farther and farther from me.
The Mom you knew is gone. How you do the day to day I don't know. I never could have, and I loved my career at a nurse. There is no way I could have done this and not lost myself.
That you are even able to get it together to post to us is somewhat a miracle in my book. I am so sorry you are going through this. I can only advise you know your limitations; do placement when you must. I am so sorry.
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Please make sure that you are making yourself a priority and not just mom. You are talking as someone who is probably overwhelmed, and burnt out. And that's ok. Caregiving for a loved one, can be very stressful if you don't make time for yourself as much as possible. I see in your profile that you have Hospice involved, but as you are already discovering, they really don't do much in the big picture of things, leaving still 99.9% of moms care on you, so you must hire some outside help to come in to help you, so you can take a break every now and again, and do something fun and that you enjoy. That's the biggest mistake caregivers make is not also taking care of themselves. That's when we as caregivers get in trouble, and start suffering from burnout. So please take care of yourself, and try and enjoy whatever time you have left with your mom. You're not a bad daughter, just one that is needing a break. Hope you can get one soon.

Oh, and as an afterthought, since mom is under hospice care, they do offer respite care at their facility for 5-7 days. You can always look into that, so you can get a break.
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Don’t feel guilty. You aren't horrible, certainly not a bad daughter. Who would want to spend their time and their own life doing unpleasant things, over and over again? Would your mother want this to be happening? I doubt it.

Hospice is not about prolonging life, it’s about making end-of-life easier. I hope that for both your sakes, the end comes soon, without pain and without guilt for either of you.

I have been reading a biography of Samuel Pepys, the 18th century diarist. He died in great pain, with his priest praying at his bedside “Sweet Jesus, come quickly”.
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If you're the worst daughter in the world, then I was the worst mother in the world because I longed for a return to the days that didn't include brushing my children's teeth, changing their diapers and spoon feeding them.

Sometimes it's enough to know you aren't alone. I remember when I was going through the agonies of colic with my oldest someone gave me a book called "Operating Instructions," by Anne Lamott. It was a diary of her first year as a mother, and I remember being absolutely dumbstruck when one entry began with "I hate him." How could any mother think such a thing, let alone write it down -- except I also had had those thoughts when my daughter cried every single day for eight hours straight.

Suddenly I wasn't alone, and you are not alone in having the agonies and thoughts you're having. I have them, too, and I'm not changing my mother's diapers or brushing her teeth anymore. She's in a nursing home, but I can hardly bear watching her decline bit by bit and I can't even be there to help her because they won't allow visitors. I know it's a normal reaction, but it doesn't make it any easier to understand why I would think she'd be better off if she was gone.

This, too, shall pass.
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Dislife - I'm in the same boat, except my mother could still brush her teeth more or less, sometimes, she pulls down her diaper and tries to brush her _ _ with the toothbrush. Disgusting! Disgusting! If she still had her mind she would die of shame.

I am writing up my living wills & advance directives, and I am going to add one more instruction to it: No spoon or tube feeding unless temporary. If I can't feed myself, then let me go. Just give me morphine to keep me comfortable.

To answer your question, No, you are not the worst daughter. You're fed up and want your life back. Same here.
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Would you be surprised to know that you are not the first person who has made the same comment here on AgingCare? Many, many of us have confessed to having the same thoughts and frustrations - even those of us who began this task out of love and a desire to see it through to the end can find ourselves in despair and overwhelmed by the unrelenting needs of those we care for. Do you get any help or respite? That saying about putting your own oxygen mask on first is relevant here, you can't go on indefinitely without recharging 🤗
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Then add me to the Worst Daughters in the World Club because every day I ask God and my dad if they're ready to come take my soon to be 94 year old mother back home with them yet? Apparently the answer is no, but I still ask daily.

Death is not the end but a new beginning where there's no more pain, diapers, needing to be spoon fed, dementia, sleepless nights, chronic pain and complaining, non stop misery and about 1000 other negative things too numerous to mention. We all get a certain chunk of time here on earth, yet some seem to linger in misery, causing lots of misery for many, many people, for a century or more. While others are taken in the prime of their lives before any pain and misery even set in. No rhyme or reason to any of it, is there?

One day at a time, my friend. Wishing you strength and endurance but most of all, wishing you grace for the feelings you're having.
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cherokeegrrl54 Dec 2020
Such wise words.....thank you.
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Glad you found AgingCare, Dislife. You definitely are not alone in the line. You have lots of company and I hope you find the emotional support you need here. It's a safe place to vent, with lots of wise people who can answer any questions you have, and other folks (like so many have already said) who feel the same.

I'm glad you have hospice for your mother. They are a wonderful help, but if you can afford more care, I imagine it would be worth it so you could have some time to yourself.

My heart goes out to you,
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That is alot to have to do every day and it is certainly understandable to want relief from all you are doing.

I agonize about the fact that my mother is now in a nursing home after 7 years in AL. She is on oxygen and its very questionable if she can ever be off it. She is not mobile at all. She can only move from recliner to bed and back with alot of assistance. In my mind there is not much if any quality of life to this. I told her for years her weight could become an issue and my worst nightmare has come true.

Therefore I am torn between being sad she has arrived to this state of living with the only alternative being death yet I am not wishing her to die but if she continues to live she must do it under these conditions.
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Hello. I am right there with you as far as the work load. Have had my mother home for 4-1/2 years. Had some caregiving help until covid came along. So it has just been me 24 hours a day since March. Prior to that I had a caregiver for 6 hours a day during the week. When that was the case, I wished for more time...now that 6 hours a day during the week would be heaven. I haven't wished her to go...but have acknowledged that life "might" be easier when she is gone. Have also told her that it's ok to go. I love her so much...and it's so hard. She can no longer walk with out my help. Potty and feeding are my job as she can't do those things any more either. I deal with the guilt you describe and I deal with wondering what I may have done wrong for her to get worse.

You're not a bad person at all. Just tired and normal.
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cherokeegrrl54 Dec 2020
You haven’t done anything wrong! Its human nature to age, sometimes gracefully and sometimes not......you have done all you can to show your mom how much you love her. and as ive gotten older, i think that all the life prolonging meds isnt all its cracked up to be. Whats the point when our bodies and minds wear out? Just one of the things we all face one day....
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All these shares are incredibly moving. Each one in its own way yet all arriving at the same conclusion.

As was mentioned it is.so much more difficult because we are not allowed in. My mother was moved to a more permanent room. I called the nurses station to ask that if everything was moved for her. I mentioned her address book because my mother still has some mind trapped in a body that is failing her. She told my daughter that pictures of her children were not moved. They probably were but where did they end up. I have to try to communicate to my mother with what she has left of a mind. If I were allowed in I could figure out problematic issues.

We are supposed to have one family member allowed to visit Christmas week. I already have started a list of what to check about.

My mother has a septic infection. Heavy antibiotics administered through an IV in the hospital could not rid her body of it. She is now on an oral one. I don't know whether it is best for her to continue with that prolonging her life or if stopping it would be better or could that cause her more gradual distress. I don't know that if that is a choice I could even make on her behalf. It is as though all doors lead to nothing beneficial and living with that day to day is despairing.
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I must have been the worst daughter in the world too, then.

I mean, who wouldn't have their heart gladdened by scrubbing a slimy denture? It's a privilege, ain't it?! What was wrong with me that I hated that particular job for my mother more than almost anything else?

Now that I do it for a living - not exactly, but kind of - none of this troubles me in the slightest. And I suppose it's partly because we go to a house, we're there for an hour more or less, and then we leave behind a person who (depending on individual requirements) is clean, fed, medicated, comfortable and able to carry on the next bit of their day.

The point is, then, maybe, that when there are clearly defined limits to tasks, they don't ooze so much into the rest of your daily life and ruin it.

Draggy, boring, tiring, mildly disgusting chores that any normally-adjusted person would much rather not do can really get you down, and it can - I completely sympathise - get out of all proportion. Try this exercise: how long does it take on average to...

Brush her teeth
Change her and clean her
Help her eat each meal?

Once you've added up, timetable those chores - on paper, if you're the sort of person who does that - and you'll keep them in bounds.

Do you also have regular highlights? :)
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I also want to share a happy memory of denture cleaning - my client could clean his own teeth, but he struggled with manipulating his partial denture so meanwhile I did that. One morning the wire retainer snagged on my surgical glove and stuck there, and I shook it off saying: "arrggh! Bitten by a denture!"

The lovely man laughed so hard he got toothpaste all down his chin 😄
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Daughterof1930 Dec 2020
Funny, CM! My dad also had a denture experience when he went to visit the most prissy, proper elderly lady from his church when she was hospitalized. When he walked in, she exclaimed how happy she was to see him and he thought he’d done well by visiting her. Then she said “it seems I’ve dropped my teeth under the bed, could you crawl under there and get them for me?” My ever helpful dad did just that, washed them off in the sink, and she popped them back in!
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Thank you, all of you! I was having a really bad few days. Yesterday, reading everybodys responses helped me feel not so alone. I love my mom dearly, and I dont want her to go. I am grateful for this safe space to vent❤
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I spent over five years enabling my parents to continue living at home. It was ridiculous but they would not accept any outside help or move to assisted living. There was no quality of life just a bare existence in a rundown house, not eating properly or bathing, mom having falls every other day and dad wandering around lost with dementia.

After a really bad fall I moved mom to assisted living, no discussion or arguing anymore just made it happen. Moved dad in a few days later. Had they let me move them a couple years sooner they could have had a decent, safe and active life for a little while. They were cared for well but it was too late for them to be able to participate in anything, again it was just existing not living.

Mom continued to have one fall after the other, ended up with several broken bones and in horrible pain. She died in 2017. Dad moved into memory care and wandered the halls. I moved him near me last year and he died this past September. Mom was 87, dad was 90.

I’d been wishing it was over for them for a long time. In all honesty it was a great relief after their passing. They were relived of their suffering and I was relieved of the constant worry and watching them suffer.

I grieve them now in bits and pieces. I have all of dads tools in my shop. Sometimes I look at his tools and remember when he could skillfully use them. It knocks me back a little.

But I have no guilt about my feelings. Their misery drug on far too long. I pray that I have the wherewithal to not let my life go beyond my sell by date. My folks had this vision that they would gently pass on while watching wheel of fortune with their TV trays in their laps. If it would just be that simple.
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lealonnie1 Dec 2020
Beautifully said, Windy.
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Thanks everyone. I love my mom dearly. I realized I as read all your words, that I am suffering from terrible burnout. I have a dear, dear friend who has volunteered to sit with my mom 1 day a week and give me a break. I will never be able to repay her! I appreciate all your combined experiences and words of wisdom.❤
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lealonnie1 Dec 2020
I don't think you have to remind us that you love your mom dearly. Nobody is on this forum that doesn't care about their loved one, or they wouldn't be caring for them in some capacity & pouring our hearts out looking for support. I seriously doubt anyone thinks you 'hate' your mother for feeling like you do. Hatred has nothing to do with wishing you had your life back and wishing that SHE was out of her own misery.

Don't let unfounded guilt prevent you from feeling justified feelings. We're all human, we're all tired, we're all burned out, and we're all in this together, too.
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It is heartbreaking to watch a parent decline.

It gets to a point where they are unrecognizable to us.

They are no longer the parent that raised us.

The roles reverse. We become the parent to them.

They are no longer capable of being responsible for themselves. It’s incredibly sad.

So, your feelings are valid. Honor them. Many caregivers go through this.

I would say the majority of people feel as you do, leaving only a few martyrs that willingly sacrifice their lives.
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Your not a terrible daughter. Your a tired daughter. I have days I wish the same thing. It is just being a mother to a over size toddler. What you are feeling is normal.

It is great that you have a friend to help you out. We all need a break! Just make sure that you show your friend how much you appreciate him/her.

Hugs
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