Mom has a chronic blood cancer, depression, severe spinal stenosis and when she went to rehab didn't listen and tried to toilet herself in the middle of the night, fell and broke her hip three years ago. Hip healed, but she was resistant to rehab and felt uncomfortable when aides would follow her but use a cell phone, so she stopped trying and is now almost completely immobile unless using a wheel chair. Her husband (my dad) died last August. They were both in the same AL facility at the time but in separate rooms due to his dementia,
Now she will start to wake in the morning, feel terrible, and feign sleeping often until mid afternoon and sometimes until dinner. Therefore she never gets her antidepressant or pain meds both of which take the edge off, but don't completely eliminate her issues.
I live 400 miles away and about 18 months ago both my siblings living in the same city as she, went through divorces and decided they wanted nothing to do with either of their parents and so I became an only child when it came to helping out the aging parents. I was always set up to handle the finances since that is my training and not theirs, but everything is set to be divided equally so monetarily there are no conflicts.
Two months ago I hired a care manager in the same city where my mom lives to see if there is anything else I can do to give her a better quality of life. Another trial of PT was suggested but mom refused. AL nurse manager felt we should try hospice for her but she was turned down.
I get calls several times a week from mom saying she wants to die and is in pain but when the dr saw her last at the AL facility (they were supposed to call me prior but didn't) she told him she was not in pain. He is just a visiting dr, her PCP won't see her unless she comes to office and she refuses plus it is difficult for her to do so. She can remember to call me but not push her call button to get food or meds. Guess she just wants me to make the calls for her or tell her to push her button.
Any suggestions to help her end of life not be full of pain, despair, and anger at life? Pre-Covid my husband and I were travelling there every 6-8 weeks despite hubby having a fulltime job. We have not been out to see her since due to our own risk factors. I do call my mom several times per week and she does have a sister who visits her about 3 times per month.
Is there anything I am missing that I could do? The AL facility tries their best and I am not seeing neglect. The care manager states their parent company and other home in the area all have a good reputation except for a random poor hire.
I have read through many questions and answers here on this forum and there seems to be good advice given here.
My mother acts in a similar way to yours; won't pull the string/push the button for help in her Memory Care AL, yet cries with chronic 'pain' and misery that cannot be confirmed by the staff. When I call to fact check (which I find to be 100% necessary b/c my mother lies like a rug), I seldom get the same story from the nurse that I'm hearing from my mother! Meanwhile, I'm worrying myself sick sometimes and up half the night wondering what I can do to ease her pain! She doesn't qualify for hospice either, btw, because she's upwards of 200 lbs while chronically complaining that she's 'throwing up and throwing up and throwing up' which is never documented by the staff. See where I'm going with this?
When my mother sees her PCP, which is every single week, she also tells her she's 'not in pain', yet tells me she's DYING of pain and cries and 'cries and cries from the agony'.
I get the same calls about 'wanting to die' and 'finding a way to kill herself' and 'looking for a gun' or 'throwing herself out the window' or 'running out in traffic' several times a week myself. Trouble is, she lives on the first floor so jumping out the window won't work. And she's wheelchair bound so 'running out in traffic' won't hold water either. When I was a kid, she'd rush off in the car, burning rubber off the driveway, to 'drive the car off a bridge and kill herself'. I'd be crying by the door thinking OMG, this is IT, but it never was. Emotional manipulation is what it was, in reality. And still is, unfortunately.
Last night I had to hear about how her niece was 'dying to have me move in with her' and had a bedroom all set up waiting for her arrival. The niece lives in a 4 story house across the country, is pushing 70 herself, and said NO such thing, I guarantee it. It's a guilt-trip ploy she likes to use to say that her NIECE wants her, why doesn't her own DAUGHTER? Passive aggressive manipulation at it's finest. I asked her when the niece was coming by to pick her up? She changed the subject. Even with moderately advanced dementia, that old muscle memory for game playing is still alive and well!
I live 4 miles down the street so I go to visit her every Sunday. She always looks FINE, yet to hear her tell it, she's 'dying'. She's been dying since I was a child and I'll be 64 next month. The truth of the matter is, I can't fix my mother's pain, despair and anger at life and neither can YOU, even if you lived with her (God forbid) or lived right next door or 4 miles away, like I do.
My mother will also be completely immobile herself here shortly, thanks to her refusal to do PT, so we'll see how long the MC is willing to keep her there. They won't put up with residents who are bed bound, unless they're on hospice, and we know my mother doesn't qualify for that.
All this to say.........I feel your pain! You are now seeing why your siblings have backed away from the situation. I am an only child so I have no other choice but to handle everything for my mother, with by the way, no training in finance either, but 3 checkbooks just to pay my mother's bills!
Wishing you the best of luck sorting the bull from the crap and realizing that when your mother truly needs help, she will find a way to ask for it. I am sorry that both of our mother's are miserable, and I truly wish there was SOMETHING we could do to make their lives better. But after a lifetime of trying and failing, I just do not think it's possible. If you figure out a way, please PM me and let me know, cuz I'd sure like to hear your tips!
Day 1
I am not in any pain. I am so grateful that all this time I have not had any pain.
Day 2
I just cannot do things anymore because the pain is so bad.
I used to beat myself up with shoulda, coulda hindsight, second guessing myself about care decisions. But it gets to a point where you can only do as much as elders will accept and allow. Life is horrible at that age for most folks. Cant really blame them for being grouchy and uncooperative.
It certainly seems to me you’re doing all the right stuff. Don’t beat yourself up.
Looking back on my experience of trying to keep my folks in their home, disaster, then the fight to get them into care, WWIII, the long drives, falls, ER.............I think I had PTSD for a long while after mom finally died. Couldn’t sleep, horrible nightmares.
Dad dad last year but he was still a gentle cooperative soul even with his dementia.
Im better now. Most memories now are the good ones of earlier years, I’m at peace with it all and sleeping better these days.
Good luck to you.
Thank you for taking the time to reply.
My DH aunt has been going through a rough patch lately. I noticed the antidepressant she took could be increased to double what she was taking. After discussing with her geriatric primary we doubled it. It seems to be helping.
You could also call her when you know the nurse will be there with the pills and ask her to take them while you are on the phone.
If she likes flowers, have some delivered routinely. If she likes animals, see if there are therapy animals in the area that could be taken to visit her. If she is a member of a church see if they will visit if allowed in her area. Dementia patients forget these type visits once they are out the door but since your mom doesn’t have dementia, they could brighten her day. You can also set up some kind of a gift service where she could get a card or cookies or lotion or something in the Mail fairly often. A gentle massage might be nice or a mani/pedi. Someone to come watch a funny movie with her or give her a ride in a wheelchair. Perhaps they could come in with the sister to get to know your mom and then come back on their own. A hired younger friend to come in to brighten her day. To read her a story or write cards for her to Mail or make FaceTime calls with. You keep thinking about it and I bet you will think of something that will help her get a bit of a smile going. I would start with the pills. Have a heart to heart with your go to at the facility and tell them you need their help in working around the naps. Let us know how it goes.