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My mother had unexpected surgery and has declined significantly since then, which propelled me into the world of caregiving. Her mobility is hindered and she needs help getting in and out of bed, getting on and off the toilet, moving around, etc. She can walk, but still pretty much needs someone with her 24-7. My sister and I have been trading off, but my mother no longer wants my sister to help. I can't be here 24-7, but I think that is what my mom wants. I am 37 and not ready to give up my life and I feel guilty for that, but is that even a realistic expectation for her to have? I know in-home care will get expensive, but I am not sure what else to do. I don't want to put her in a nursing home, but a friend told me that if she needs someone around the clock, she doesn't need to be at home. I feel stuck because I don't want to feel guilty about not always being here, but I want to care for her the best I can. This is all new to me and I feel extremely overwhelmed. Any advice or suggestions?

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Your Mom has had a life, her life. You are 37. You need to have YOUR life. As to guilt, you aren't a felon, a murderer. You are a human being with a RIGHT TO YOUR OWN LIFE, and a human being with LIMITATIONS. Own that. If you do not, at the remarkable YOUNG (in these times) age of 67 your Mom can live another THREE DECADES. Sorry to yell at you in all capitals. I am 80. It would break my heart literally in two to think my daughter, now 60, would give up her life, some of the most quality years of freedom in retirement with her hubby, to care for ME. No, NO and NO!!!!!!!!! Wrong. Awful.
My suggestion is that your Mom get good rehab. I don't know what surgery she had or what underlying conditions, but she's about young enough to be MY DAUGHTER. She needs to get up and around. If she cannot she needs placement to the best of her assets and abilities, either Board and Care, Assisted living. You will visit. You will not abandon her nor your love for her. But you are NOT EVEN FOURTY yet. You are so young. Please don't wash your life down the drain in the name of guilt. Use the other G-word which is the more honest one. That is GRIEF. You have a right to mourn your Mom, for whatever reason, needs 24/7 care. But that isn't your burden to bear.
I am begging you to get counseling and help in working out a way to get on with the ONE LIFE you will ever have. It is a waste not to do so. Quite honestly it is, I think , a disrespect for the gift of our lives to lay them on the altar of another's needs when the other has already had a life, and now needs care.
This is your choice. When you make it I will be the first to accept your decision. What I will NOT DO is give you sympathy for that decision. It will be your own for your own life. We have free will. Even the believers among us understand that their god gave us free will.
Sorry for this hurtful decision, but not everything can be fixed or made perfect. And in an attempt to do so you will be throwing in the towel on a life of your own. IMHO. I know you will get the advice of others here. I hope you will work your way through to your own best choice.
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Apples5 Apr 2022
Thank you for your honest, transparent, and candid reply. Guilt has been at the top of my thoughts and this post and the replies have been so helpful in alleviating that. There are times where I did feel like I needed to give up my life and dedicate it to helping her, but there has been so much insight here to help me move forward. Thank you again.
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Apple, read Atul Gwande's On Being Mortal and Roz Chast's Can't We Talk About Something More Pleasant?.

AND think about wants vs. needs.

A dutiful child helps a parent get the appropriate level of care to provide safety. They don't provide hands on care themselves at the expense of their livelihood and relationships.
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Apples5 Apr 2022
Well said, Barb. You have provided a lot of great insight. I was apprehensive about posting here for fear of sounding selfish or coming off as complaining, but it has been a refreshing flow of supportive replies that I greatly appreciate. I will look into that book, thank you for the suggestion.
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First your mother does not get to dictate how you spend your time.

Second, your mother is responsible for covering the cost of her care.

Third, you are 100% not responsible for providing any care at all.

Fourth, you are far too young to give up your future and impact your own retirement.

Fifth, look up Fear Obligation and Guilt, FOG.

Sixth, look up setting boundaries and sticking to them.
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How should you come to grips with her going to a facility, or her come to grips with it?

You cannot provide 24/7 care, because then you won't be able to support yourself.

Many years ago, my gma broke her hip. She called all her friends and told them excitedly "I'm going to be an invalid and my daughter will wait on me".


Only problem, aunt worked and mom had a toddler and 2 other kids. They told gma that she was going to rehab, would learn to walk again and return to her apartment.

She never really forgave them for "sending her to live among strangers". But she learned to walk again.
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Apples5 Apr 2022
Thank you for sharing. I probably should have kept her in rehab longer, but was hopeful she could finishing recovering at home. She was also calling me in the middle of the night and early morning while in rehab because the aides were not coming to help her turn over or change her so that influenced my decision as well. I may start to vet facilities and see what my options are. Thank you so much for your insight.
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A lot of nerve for someone who wants 24/7 free personal care to be dictating who she does and doesn't want providing it. Your time and your life have value and if you want to GIFT part of your time to her that's great, but it's your time and nobody (with the exception of minor children you give birth to or otherwise legally agree to care for) has the right to demand any of it.
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Apples5 Apr 2022
Thank you for the confirmation. I feel bad because I have thought that I "owe" it to her as my mother to help her the best I can, but I also know that devoting 24-7 to anything or anyone is just not realistic. Even parents with kids get babysitters. I do think I need to get tough and tell her that we have perfectly capable and accessible help from my sister and we need to make that work. Thanks again.
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Hmmm...impatient when nurses/aides can't come fast enough...sister's care 'not up to par'... sounds like your mother is going down the path of enough is never good enough. If you cave in, her situation, and demands for care, will only get worse. I agree that she needs an assisted living situation with her current needs; I also think that you and your sister need to present a united front. Always accept help from a sibling who is willing to give it, despite what mother says she wants. She is not being reasonable.
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Apples5 Apr 2022
Yes. Initially, I was concerned but I started to realize that health-wise she was fine and had recovered from her surgery, but was just uncomfortable. It is hard because I don't want her to be uncomfortable, but also have to think what is reasonable. She was safe and not in pain and that is what I had to remember. Thank you for that advice and the advice regarding sibling help. It is a hard conversation to have because she gets very upset when I talk about my sister coming, but I just need to get to the bottom of it and make the decisions that are best, not just preferred. Thanks again!
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OP, I think from your posts that you may well be making your mother worse, not better. It sounds that she is becoming more demanding, less co-operative, less willing to hear the truth, less willing to re-hab herself, less reasonable, less understanding about the needs of you and your sister.

I am sure that you love her, and find this hard to swallow. However the longer you spend on this site, the more you will hear exactly this. If your mother is behaving like this at 67, and it doesn’t stop, she will be a nightmare at 85, but still going at 95.

It is really important that you pull out of this ASAP. Not such a good idea to have live in carers, as the burden will still be on you. Turn off your phone in the night – children learn to wake and go back to sleep, and so can she. Get your sister on side before your mother alienates her permanently, and both present an ultimatum to mother – you live alone and organise your own care needs, or you go to AL.
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Apples5 Apr 2022
Thank you. What you are saying makes sense. I need to take action sooner than later. Something I am realizing from the many great replies here is that I can make sure she is cared for without that duty falling solely on me and still uphold my virtue as a daughter.
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How long has your mom had Parkinson's? Surgery with anesthesia can really negatively impact folks with Parkinson's, and some never bounce back to their former level of functioning. 67 is very young to be so impaired. I think OT/PT are on the right track in thinking something neurological is going on that is affecting your mom's ability to recuperate. Hopefully you'll get some ideas from the neurologist. For Parkinson's, it's strongly advisable to have a movement disorder specialist, not a general neurologist. Your mom should seriously consider assisted living at a minimum. Her unwillingness to go into a facility is likely based on her experience at the rehab place, or general ideas about nursing homes. If she's made aware of what assisted living is like, she may be more willing to consider it. You and your sister should not get tied down with 24/7 care, especially since your mom is dealing with a progressive disease and not just an extended period of recuperation. You need to really set your foot down--easier said than done, I know. Good luck to you all!.
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Apples5 Apr 2022
Hi. Thank you for your reply. Not officially diagnosed, but seems that is the diagnosis. She retired in 2019 and experienced the decline in her mobility since then. I have also heard that surgery with anesthesia could be debilitating. Thank you for the advice re: movement disorder specialist. I will look into that. I think her unwillingness definitely comes from her stay in rehab and I have always seen a stigma around putting your parent "in a home." But if she needs around-the-clock care I am not sure what else to do and know I need to realize what is really best for her versus the stigma. Thanks again.
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" I don't think my sister offers her the level of help that I do and that is where the neediness is coming in, but she also says my sister is "mean" to her. I can't confirm it so not sure how to proceed there."

You *really* need to talk to your sister. I imagine sister has told your mother more candidly than you have that the situation as is is not sustainable, and possibly thrown in a few home truths that came across as harsh (but not necessarily any less true, mind).

Why can't you confirm? Is there history between you and sister? - as you've been sharing the care previously it didn't sound like it.
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Apples5 Apr 2022
No history between us, but as you suggested, it is figuring out if it is her being mean or just candid. Our initial goals were to continue to work with my mother to get her back to her prior state of independence, but I fear our being there all the time has only made her more dependent on us. I have started to force the issue less and less where my sister has still taken a stance of rehabilitation. There are times when she can do things on her own and times when she says she needs our help and there is no consistency with regard to when (morning, noon, or night.) I told her that if she could at least stay by herself overnight it would help tremendously, but there are nights where she is fine and others where we are up and down with her several times throughout the night. It is difficult.
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Your mom has a choice.
Accept the help of you AND your sister or SHE will have to pay for caregivers that will come in when you are unavailable.
Please note that I indicate your mom pays for caregivers. Not you, not your sister.
If mom is living in her home and she can not be alone then she needs caregivers or she moves to Assisted Living.
If she does not need medical care then she does not need a "nursing home" Assisted Living is different than a Skilled Nursing facility.
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Apples5 Apr 2022
Thank you. That note re: Assisted Living vs. Skilled Nursing is helpful. I do think I was confusing the two / considering them one and the same.
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