I am an only child, married and in my thirties with 3 children. I have always led a hectic life, with my 3 children actively involved in sports, activities etc. I work full time and my husband works full time. My mom has suffered from MS for 40 years and progressively gets worse each year. She has difficulty getting in and out of bed etc. and now needs a motorized scooter/wheel chair to get around house. She can barely walk with a walker, very unsteady on her feet and falls all the time. My dad was her primary caretaker but he passed away from cancer last year. My husband and I then moved her into our subdivision, in a duplex that she built, so it could be all handicap accessible and moved her in after my fathers death. My mother has been struggling with depression since my fathers death, (understandably so), refuses to seek counseling or group counseling to deal with grief. All the stress from my dads death has made her MS worse and she has progressively gotten worse over the last year. She falls all the time, My husband and son go over to pick her up when she falls, I can't physically pick her up off ground. I am afraid she will hurt herself severely when she falls, but she refuses caregivers and assisted living. We are constantly fighting, I try to tell her she needs more help then we can give her, I want to hire home help or take her to view assisted living facilities and it winds up in a huge fight. She will not do anything socially when other relatives have tried to take her out to eat or visit etc. It is like she solely depends on me for entertainment. I cannot give up my full time job.. as we need the money. I offered to hire cleaning lady to clean her house and she almost bit off my head. My mother only wants to use myself or my oldest son for help to go around and I don't want to burden my kids with that task. My mom has fallen so much and used her emergency alert system so much, (it is obvious that she either needs live in care or assisted living, but she has refused both for this past year.) that the police have advised my husband and I that they are going to report her to the state elderly services if we do not fix this situation, as they feel she is not safe and needs more help. If this happened then the state would assign a case worker and evaluate and force her into nursing facility. (if they felt it was needed, when clearly it is). We asked for some more time to decide, a I feel a live in would make my mom happier. I cannot find anyone good, with the amount my mom is willing to pay, no one will work as live in. I try to reason and say nursing facility will be far much more ( she does have a nest egg that would get her by for next several years), but she doesn't listen.
She refuses to listen to anything I say, and everything I say, my ideas and suggestions are crazy. She refuses to go to PT therapy, and since she won't go, now gets bed sores from sitting in chair all day, We had to take her to ER for infection of bed sores. and both legs were wrapped up in soft cast like gauze for weeks while they healed.
I also feel like my mom is starting to get dementia as she does not remember anything, often repeating herself, forgetting things, calling people wrong names all the time etc. I am loosing it! This past 2 years, with my fathers death, and then dealing with my mom at the same time, has my own health deteriorating, I suffer from migranes, constantly, now have high blood pressure. I am not overweight, have always taken good care of my self but this stress is taking toll on me. I don't sleep well and now take meds from my DR to help me fall asleep. It has taken a toll on my children, all the stress, as my oldest, a teenager, has become very defiant, getting caught using marijuana, so I am dealing with all these issues too. Husband is very supportive and does all he can, but I just feel so overwhelmed.
Sorry for long post, I just need to vent, and at my age, I really cannot find anyone going thru this, I just feel so alone.
She would not accept outside help, because she believes she is fine, and can be left alone to do whatever she wants. If I don't allow her to do something, she will go to her room, lay in bed, and cry. (I'm sure she has depression, because we have lost several close family members in the past 2 years, plus news of sickness in friends and distant relatives)
It is good to have this site as a way to vent feelings. You are not alone.
After her third husband died, my stepfather, who was the second husband she had nursed at home until death, I came home for the funeral and realized she was exhausted to the point of being unsafe, especially alone. So I stayed a few weeks thinking I'd go on when she recovered. Well, it became obvious that little problems arising in daily life were often things she was not equipped to handle, in one way or another. All her kids, except her oldest and myself, lived out of state and my oldest sister was soon widowed so there was not even a man in the family to do the man things, if you dig. A big concern I had was that she would be prey for anyone who noticed her situation.
So I voluntarily told her I'd stay with her til the end. I knew good and well what that might mean, as I am an RN and worked mostly geriatrics and home health at the end of the years I was licensed.
I don't regret it although my situation isn't as dire as yours or even as demanding, now, 11 years and 3 broken bones and who knows how many surgeries later. Her biggest problem is osteoporosis and muscle weakness from her early hysterectomy in her early 40's without estrogen replacement and her sedentary lifestyle. She was only sedentary because she worked all her life on her feet and she always had to work...she was just tired!
She was 43 when her and my dad adopted me so she was old enough to be my grandma which makes the situation what it is.
But when I made that promise that day, I had asked myself where she would be if I hadn't been there and free to give things up to help her stay at home. She would have been in an nursing home at the first problem because that's how the others would have dealt with it. I doubt I would have been consulted, or if so, regarded as far as my own concerns and opinion. She has no dementia, to top it off. She knows where she is, even when we (both) forget what day it is. She always knows everyone...she's pretty sharp for her age, still. Especially relatively speaking.
She tried to do as much for herself as long as she could so that is another difference...your mom couldn't so I'm not criticizing, just saying that my load has been lighter, no doubt. It's only been total or near-total care for the last year, having increased over the years as I gradually took over household business, shopping, then chores, etc. Now her personal care is also something I must do for her but because of all these factors I've described, it isn't near as rough on me as it is on you. Rough, yes, but not that rough.
So I do feel for you because I can imagine your position and how I would feel. I would feel the same.
The thing is, that she is an adult and so are you. You are helping her but you are not her legal guardian (right?) and she is as emancipated from you as you are from her. In other words, you can't force her into anything but on the other hand, if APS (adult protective services) gets involved, it isn't going to be 'on' you if SHE refuses to leave her environment to live in a safer one with more care.
The decision might be made for the both of you, but who knows what might happen?
Your life is just as important as yours and maybe your kids a little more than both since they are our future. I chose this life but I don't have kids and I'm not married. I could not do it if I did have kids. My bf is a prince and more like a husband although not living here at the time to help take some load off of me. And he helps me. But kids require more than I would be able to give them and still take care of mom adequately.
I really don't know how so many of you manage to do it, with full lives and then adding on caregiving! I am amazed at your fortitude and stamina and I admire you all more than I can say.
Do you have POA? Can you realistically afford a caretaker? Assisted living? Sit down and crunch the numbers. Begin there. Once you have that data, you can plan. For example - a part-time or full-time caretaker, or even 24/7 caretaking.
You must care for you and your immediate family.
If you can, hire a caretaker. It will take time for your Mom to feel comfortable. Once they build a relationship and the caretaker shows herself to be reliable, your Mom's heart may soften. This next step is scary for everyone, but it will get better.