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.
If you break, you serve zero purpose to mom. So if it’s that you actually can’t do this — then placing her and tending to her as the non-caretaker is ideal for both of you.
If it’s that you don’t want to do it, then that’s understandable too. But after she’s gone, you’re the one who has to live with it (whatever choice you made) for possibly the next 20-40 years. It’s not like it’s something you can go back and undo once she’s gone.
It seems you’ve made up your mind that all facilities will suck. I’m sure many do, but as I understand it, many don’t.
Maybe you can spend some time researching what is available to her and reassess. If it’s all truly horrible — I would never let my parent’s life end on that note. But if you should find something of quality and a place you feel you can trust — I’m not sure that sacrificing all of your 50s to care for your mom personally is something you ought to do when someone else can do it better and more happily, while being adequately compensated to do so.
Moms version of a NH is probably the way she saw them as a girl. They have improved. There are some very nice LTC facilities. Nothing is perfect. Mom will never be cared for like you would have done. With me I was OCD about my Moms clothes matching and her hair looking nice. I put her outfits together for the aides and carried a brush and hairspray with me. The Dementia I couldn't control, but her looking nice I could.
It becomes not what the person wants, its what they need. Seems to me Mom needs 24/7 care that you cannot provide because you work. Start looking at places. If Mom is low income, try Medicaid for in home care. Maybe ask around (after COVID) about respite care at an AL or LTC so you can get away. A number of members talk about "Board and Care". I don't have them in my area, but maybe u do in yours.
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
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.