My mom can no longer do anything she used to do. She is physically unable to care for herself. She needs assistance getting up from the wheel chair to use the walker to get to the bathroom. She can't sit herself up in bed. She can only feed herself. And some of that even goes on the floor. She can't cook for herself. She is unable to focus on TV programs, she doesn't read anymore. She doesn't do any artwork anymore. She doesn't carry on any conversations. Her conversations are mostly about going home.
Home is her parents (my mom is 96 yrs old). She is very confused most all of the time.
We took her into our home because the rest of my family didn't want to deal with her. She always said, "please don't put me in a NH." So she is living 150 miles from where she came from and is living in our home.
In spite of the excellent care we've provided for her, I've watched her decline in steps every few months. Now the steps periods are getting shorter.
She is unhappy living with us. Lots of times she thinks she is in a NH now.
How do you rate the quality of life vs. the care, time, money, and life it is taking from us to care for her?
To me, you do have to look out not only for her care, but yourself. Also, how effective can you be as a caregiver for someone 24/7? I would think you would be burned out.
I know that if I were looking for a facility to care for my loved one and it was only one or two people who were going to do it around the clock, I wouldn't be impressed, as I think it takes multiple shifts of people to avoid fatigue, but that's a decision for the family to make.
Even though many people say they never want to go to a nursing home, they may say it when they don't anticipate what condition they may be in. I certainly wouldn't want my adult children spending their time 24/7 providing me care so that they can't have their own time or retirement. I think we have to reasonable about it.
Why not see what is available that would meet her needs? Have you considered Memory Care assisted living? Maybe a nursing home would be in order, but I would have an assessment of her abilities and needs and see what might be a good fit. Maybe, a place that can offer more care, activities, stimulation, etc., might offer her more contentment.
My loved one sounds a lot like yours in your description as far as her physical abilities. She does well in Memory Care and seems much happier than before she went there. All of her needs are taken care of and I am able to support her with visits and phone calls. I am able to focus on her more now. She is with others who have dementia and it seems to make her feel more comfortable.
Families approach care in a number of ways, but if it isn't working, I would explore the options and try something different, whether, it's bring in outside help or finding placement.
Quality of Life? Very subjective question. From your description I see a quality of life of about .1 on a scale of 10. It's very hard to say what is occurring in her mind. They may well be some happy thoughts but also confusion and fear. We all stand around and look at struggling old folks and say, "Please God, don't let me end up like that". Stroll through any nursing home, look around and ponder the quality of life question.
Thanks for posing the question. I hope there is some more discussion on this issue.
It's not uncommon for someone from our Mom's era to say years ago "don't put me in a nursing home" because they viewed nursing homes as being like an asylum.
It's only been two months for my Mom in long-term-care here in Virginia, and she thinks she is staying at a hotel in Connecticut [where she grew up], and wants to visit her sisters [all of whom have past].
MIL has been hanging on for forever and I see zero quality of life. But she has always been extremely stubborn.............and well, I think she's too stubborn to let go. I wonder about it anyway.
My mom is also stubborn and has been severely OCD all her life. Letting go.........doesn't fit into her OCD schedule. She can't stop with her obsessive behaviors even though she is weak etc.
I feel compassion for sure but I believe there is some truth in my comments.
I have been caring for her since 2011, 24/7 Family helps what they can, but even not knowing me, I am 'her person' and have to provide most of the attention. With her sleeping very little, so am I. We started receiving medicaid in home care of 4 /12 hours per day to give me a rest last October 2015, and I am just now finding out that there are even more services for home based care that were hidden from us.
Once the ADLs start going, decline speeds up and quality of life goes down. I would rate my inlaws quality of life as 4 for MIL and 3 for FIL because they live in independent living. If they were still at home I think both would be approaching zero. So by getting them into indy living they've extended their leases on life.
My FIL definitely has something going wrong with his brain and that's why I rated his quality of life even lower than MIL's even though it's MIL who has the degenerative illness.
We cannot live our elders' lives for them. If you made a promise you realize now you cannot keep, that's understandable. It takes courage to admit change is necessary and then to change course. Ask yourself if holding onto an out-of-date promise is doing you or your mother any good.