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I came home to look in on my mom in 2014 thinking she was dying. She lost 80 lbs after my dad died in 2013 and she couldn't take care of the house or her finances and needed help with 2 or 3 of her ADLs. I shuttle her to and from doctors appointments, stay with her through falls and recovery, stroke, and now... she is becoming increasingly incontinent (refuses briefs or padding), serving her meds (she forgets them and I can't deal with her having a more serious stroke and being in a vegetative state or having to get her through months of physical therapy appointments), needs help toileting, transferring/showering/haircuts, and soon will need me to serve her meals because her knees and shoulders are shot.


She is terrified of nursing homes, and I can understand why. They don't staff well at night, so if you need something, like to get up and go to the bathroom (which is always needed like, RIGHT NOW), you might "sit in it" - especially if you complain... the night crew will ignore you until right before the morning staff comes in.


So, she wants to age in place until her dying day. I would turn back the clock for her, and I want to give her her wish. But with this next level of care requirement, I am finding the restriction of it to be more disturbing to my life balance than I think I can deal with. I am 50 years old and haven't gone on vacation in 3 years. I am finding it hard to sleep, concentrate, relax at all. I am grateful to GOD that I have a good man here as a shoulder to cry on and helping me take care of the house while I work and take care of my mom, but this... this is nursing level care and I am afraid I won't be able to keep my job like this and help her too. If I can't, and I give in to serve her every need until she dies... what will happen to me when she does? I can't start a career and get a mortgage much later in life. And rent where I live is ridiculous.


I feel selfish and angry. Whatever blessings God has in store for me for honoring my mother I am certain are shot because my head isn't in it. Her choices are forcing me to watch my mom die, slowly, right in front of me. They are stripping me of having my own home, enjoying privacy with my love, and any kind of travel is out of the question (moot point at the moment because of COVID) because she cannot be left without assistance. I keep cycling through selling her home and getting my own place, putting her in a NH but I feel like I will be letting her down, and letting myself down because I couldn't make it the long haul. I believe, love is taking care of family when they need us - and she has never needed me more than now. But, I really didn't come home to be a nurse. I had no idea it was going to be YEARS that this would go on. When I read that back, even I can see the battle between heart and mind.


It's easy for all of us to just say to someone in my position, "Put her in AL or in a NH! Go live your life!" But, when you, and they, will suffer with whichever you choose... how do you deal with that? I want to solve this problem and end the suffering (hers and mine) but have no idea how to do that. I honestly don't even know how she could afford nursing care. I think she makes too much money to qualify for Medicare to cover it and not enough to cover it with her own finances, which would exchange my labor burden with a financial burden that I don't make enough to carry.


I did tell her that if it comes to the point that I cannot safely care for her without putting my own health in danger (I have 2 titanium hips and bad OA) then I will have no choice but to get her help. I suppose that is happening now a little bit (I have skated once or twice when I walk in and she has had an accident, doesn't tell me, and I step in it). She assumes that means we will bring caregivers in for her. And that would be possible to some degree, but we cannot right now because of COVID.


I'm probably just venting but would love to hear your thoughts on the matter. Peace.

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Venting is good. I spent 20 years owning a small 6 bed senior residential care home and was able to give many people back a more normal relationship with their parents. Everyone of them dealt with varying degrees of guilt about their decision in the beginning. We provided loving support and families were able to come visit Mom in a happy environment. Everyone of them ended up being so grateful that they made the decision to seek help to support their parents and themselves. There are many really good places out there. You can have a life and still take good care of your mom.

Having said that, I have to admit that I totally understand where you are coming from because I sold my business just before covid hit and immediately pulled my mother out of her retirement community and moved her back to her house and became her full time caregiver. She is also wanting to age in place and making it very difficult for me. Her dementia has created daily challenges. You would think I'd be better prepared than most people but, unfortunately my 10 year old self moved in with us too. I want to give her what she wants and she is putting a lot of guilt on me, but when covid is less of a threat I will be looking for a well run, caring, small facility for her to move into.
You are no good as a caregiver or daughter or anything else if you let yourself be completely used up. I had to accept that it's too late to try to gain her approval at this stage in life. Take care of you too.
Blessings
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ievolvetoo Sep 12, 2020
Yessss. I relate to this so much - the dementia, knowing better but responding out of my child-parent experience sometimes vs adult, and plotting my post COVID moves. :) Wishing you and yours peace and safe passage too.
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Sounds like you have convinced yourself she will be in harms way in a nursing home...I disagree after being a nutritional clinical staff member of one for 27 years. I have seen wonderful homes that staff well and provide great care. I had to put my mom in a assisted living memory care 4 months ago and she has actually gotten better...even her in continence has improved..she gained back her 22# she had lost , she walks again, laughs again and I have my sanity back. Is it ideaL? Of course not ...but my goal is for mom to be safe, content and not have a daughter taking care of her who is burned out and bitter..Good luck..This is a tough decision.I also went to counseling...that helps also..
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ievolvetoo Sep 12, 2020
A very good point. Perhaps I need to cast a wider net on her options. Thank you for sharing that observation!!
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You ask "When they will suffer how do you deal with that".
I have dealt with it. I have discovered that I have limitations. Not everything can be fixed.
I was a nurse. A good nurse. And I loved it. But a nurse works, for very good money in my city, 8 hours a day, then goes home and has a life. And a good pension on retirement.
When my brother, the best man I ever knew, got a diagnosis that meant 24 hour care there was one brief shining moment when I said "If you were any kind of a person at all, you would move in and care for your brother the rest of his life". Brief. Shining. Poof. GONE! I would not be able to do that.
I believe I have a right to a life. I believe that we OWE it to our parents to live a good solid giving loving life, OUR OWN life. The father eagle saves his chicks. His chicks don't return to the nest to care for him in old age. They make their OWN nest and care for their own eaglets. Thus does life go on.
Many facilities take patients now. Often they ask you isolate for 14 days before, and they isolate in facility for 14 days after. But as they say, one day covid will be gone. (like a miracle. sorry)
I think that it is time to have the honest conversation. You have given up years of your life already. Will this be easy? No. Will there be tears? Yes. For you both. But this is the circle of life, how it goes. Assure Mom you will do the best you can for her, but that you cannot continue to do care 24/7 and still have a life.
This is YOUR one life and this is YOUR choice, and you will have to make it. There is no choice you can make that doesn't come without pain. You and your Mom WILL suffer from the choice. Whatever choice you make, there WILL be suffering. Life is worth grieving when it comes to these things. I am so sorry for all the pain, but neither your choices nor my sorriness will stave off pain.
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My Papa was determined that he would live alone and die there. He tried, he really did. He came home from Rehab and LTC, after 5 months, better able to walk and take care of himself. He had an aide three times a week for a bath. He got an additional 3 years at home.

But it was a slow downhill slide the entire time. He finally got to weak to walk, still fighting to stay home alone. Wouldn’t hear of living with us or us staying with him. Now he’s in a nursing home and he’s much more stable. He’s gained weight, he walks better, he’s a lot more social. But his illnesses mean he won’t be going home again.

There are wonderful nursing homes out there. Check the rating system at Medicare.org. See an Elder Care Attorney, they can get your Mom qualified for Medicaid even if it seems she makes too much money. It’s very doable. Papa is in a 5 star facility, on Medicaid. So it can be done.

You are giving up your life AND the life of your partner. Plus, your Mom will get better care because she will get care 24 hours a day. Go for it, you will be so glad you did. Believe me, I know.
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ievolvetoo Sep 12, 2020
I will definitely check medicare.org and with an elder care attorney. I hadn't thought about giving up my life AND my partners... very, very poignant point. Thank you.
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Vent away! It should not have to be either/or, your life or hers, but instead, some adjustments and compromise on both your parts. It sounds like you have already been making plenty of compromises. You can give her choices within boundaries that You create. Most cities and states have Aging Care Services that you can check into to help come up with options.

Through this website, I found a home health care provider in our area for my very stubborn mom, who did not believe she needed any help. I could not be that person for her anymore. I tried it long distance for a couple of years. I finally explained to my mom that I wanted to support her as her daughter, wanted to laugh with her and do things together (pre Covid!), and not have our sole relationship to be her as the patient and me as “Nurse Rachet”. She understood that, and that made it more palatable for her to start having a complete stranger come to her home 3x/week. I asked her to give it 6 weeks and we would review how it was going. She and the HHC provider developed a very good relationship, and I turned into the “case manager “, who initially introduced them and was later able to step back. The HHC provider would text or call me to keep me abreast of how things were going every week, or if she had questions or concerns.

I hope this helps. You both deserve a good life, and there are people out there who can help. All the very best to you and your mom!
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ievolvetoo Sep 12, 2020
Yes! That's it! I really am most uncomfortable when I have to be "Nurse Rachet!" I just want to be her care manager and her daughter. Trying to find that balance and will definitely look into the Aging Care Services websites here. Thank you!!!
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Your mom may not understand if she has never had to care for her parents. It may be helpful to involve social services to help you approach her about the subject. The difference between caring for children vs adults: In most cases children grow to be independent adults able to care for themselves, think and make decisions for themselves. Your responsibility for them stops at 18 years and you are free. What starts out as minimal tasks when caring for an adult snowballs into 24/7 maximum care and can last for many years longer than 18 because of declining mental and physical condition. No 1 single person can safely provide care for an adult 24/7 with no break, nor should that be attempted. Nursing homes and assisted living facilities have the trained staff that do caregiving for a living. They get to return home after shift and enjoy a normal family life, where as a lone family caregiver is “entrapped” and has no decent life outside of work. It is not unusual for the lone family caregiver to die from stress related illness (or have suicidal ideation) before the care recipient.
Very good suggestions by Becky T In a previous post about checking Medicare.org for ratings.
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Your life comes first!!! Take care of yourself!! Your mother could live well over 100 years old!! People live longer and longer these days with modern medicine. She needs to go into a facility. Please find a therapist to help you through the guilt. You only live once. Start living for yourself before your mother OUTLIVES you!!
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Honoring your mother doesn’t mean abdicating your own life for her. Making sure she gets good care is honoring her. She is at the point that she needs more than care than any one person can handle alone. I had to place my mother in a care facility because if I had not done so she would have dragged me under. I knew that my healthy minded loving mother would not have wanted that for me. And guess what? My mom likes her place. She brags about how good she has it. It took 8 months of tears but she is well and I am alive. You don’t say whether you are a mother. I am not. I cannot imagine being so selfish that I would indenture my child for years so that I may die the way I wish. Have you firsthand experience with nursing homes? Not all are bad. Have you done some research to identify some homes in your area? Start there. Keep an open mind to the possibility that there is a good home where she would get good care and you could visit and make sure she is cared for. And you could get your life back. That would be a win win AND would be honoring your mother.
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I gave up my home, my security, my very idenity to come help my 86 year old husband and while I had a good idea of what I was getting into, it turned out worse than I could have imagined. He died fifteen months after I sold my home and gave up everything, leaving me with thirty thousand dollars in medical bills, the same in credit card debt in a community property state, a thousand dollars in the bank, and a house and yard in shambles. In the end, he died alone in a care center after a long stay in the hospital. Now I spend my days dealing with paper work, bill collectors and wondering where I go next at seventy eight, no family, poor health. Was it worth the sacrifice? Yes and no. I did what I thought was right, but destroyed my own life in the process which I don't think God calls us to do. We have a responsibility to fulfill our obligations, but also to be all that we can be. It is not easy to find the overlap and know the difference. Good luck.
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Tynagh Aug 25, 2020
I am so sorry this happened to you. You did the best you could but lately I'm often left wondering: Is this the way life is supposed to be? More often than not I've noticed that caregivers are left in untenable positions. Broke and broken. Good luck to you and virtual hugs.
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ievolvetoo, I can totally relate. My mom died in February after 5 years of intense caregiving and oversight; this followed many years of generally keeping tabs on her as I am the only child.

My 2 guides for her to remain at home were (1) money and (2) my physical state. I had figured that she could live at home for 5 years with my 25 hours/week of caregiving and Home Instead helpers the rest of the time. Ironically that's about what it came down to when she died. A 5-year framework.

More irony, I had wrenched my back a couple weeks before she died lifting her into bed. Realizing I had reached the end as far as my physical capabilities. Talk about the signs coming together.

My point is to do what is most comfortable for you. As others have said, you can only do so much physically and financially. I was "lucky" in that she died right at the point where I was bracing to make that hard decision based on finances and my physical state. I probably went longer than I should have, but I think that's just human nature. And now after the fact, there is no doubt I did everything I could.

Know that you are a great daughter, whatever decision you make.
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ievolvetoo Sep 12, 2020
I am sorry for your loss and, is it okay to say, I am glad you have come to the end of this painful journey? I wish you peace, remembrance of sweet memories, and a solid look at making the most of the time you have left here. Thank you for your kind words. ((Hugs))
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