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.
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.
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.
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!
Very good suggestions by Becky T In a previous post about checking Medicare.org for ratings.
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.