Follow
Share

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?

This question has been closed for answers. Ask a New Question.
If someone's quality of life is taking away from yours, and forcing you to give what you don't have, then it is your quality of life you should be concerned about.
Helpful Answer (9)
Report

I think everyone would be better off with mom in a nearby care facility. Her condition is bad now and is going to get worse. She needs 24/7 care. Few people are up to this at home.

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.
Helpful Answer (6)
Report

Send, that's sort of ....well, profound. Excellent comment......
Helpful Answer (6)
Report

Do you have outside help coming in to assist you? I would imagine it's quite overwhelming to provide all of that care without outside help. I read other's posts here about caring for someone with advanced dementia in their home and I am amazed. I can't imagine doing it. God bless you for your devotion.

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.
Helpful Answer (5)
Report

LastOne, what you described about your Mom is identical word for word what my Mom is going through. Only difference is that my Mom [98] is in a long-term-care facility.

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].
Helpful Answer (3)
Report

Oh, that's right. I forgot to add, as Windyridge suggested, it's difficult to gauge a dementia patient's happiness. Trying to make them happy, may be an impossible goal. Their brain may not be able to process the information. And this applies, regardless of where they are living.
Helpful Answer (2)
Report

My Mom is full time caregiver to my Dad. I live 3.5 hours away. Hospice comes once a day he is bedridden and his mind, agitation, frustration is increasing. Changes in condition as in decline coming all the time. What should I be doing to help my Mom. We visit every 3-4 weeks. We have her house cleaned every 2 weeks. Of course the visits are more meaningful I wanted to take something off her plate. She needs more time to herself just to run errands or go to the store. No we do not have the money to hire help for her to get a break. Hospice sent someone to give her a break and Dad had a fit, as in asking my Mom to throw her out. Mom said she would try again because has to do errands and prepare for taxes & she'd love to be able to go to church. Any thoughts, ideas to share?
Helpful Answer (2)
Report

I have 2 90 yrs olds in my house. Quality of life is the million dollar question and my pragmatic assessment is this:

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.
Helpful Answer (2)
Report

My wife has FTD. She does not remember anyone, including me, can do nothing for herself but she if fully ambulatory. She is young, resistive, combative, aggressive, naturally stubborn, does not like to be touched and the FTD causes long spans of dysfunction that makes her blind. Her eyes see but the brain does not process. Objects vanish in a white background and patterns in the floor are like chasms which frighten her. She sleeps little, rarely sits down, just wanders from doorway to doorway whining, grunting, growling, screaming, grinding her teeth, slapping her thigh, laughing maniacally. She tries to remove her left arm with a twisting motion at the wrist like removing a mannequin's hand. Sometimes she twists and makes a throwing motion as if throwing it away. Or she hides it behind her back and moves it up and down like scratching an itch. This is known with FTD or Pick's as the 'alien arm'. Her brain thinks it doesn't belong to her, but it is otherwise functional.
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.
Helpful Answer (2)
Report

Thank you All for your thoughts about my situation. I agree with you all. Thank you for all of your thoughts and sound words of advice. You also give comfort in a very disconcerting situation.
Helpful Answer (1)
Report

See All Answers
This question has been closed for answers. Ask a New Question.