Quandary about my mother's situation

L

Littlejohn

New Member
Location
Canada
Hi. I'm a 71-year-old senior who has actually come here for my mother, specifically about how she has lived for the last four years, and I'm in a quandary about it.

Four years ago, my mother who was almost 90 then, couldn't live on her own in the family home anymore after a few falls and rapidly declining memory/dementia, and loneliness that led to her being taken in by a phone scammer.

The family's collective solution was to move her into a little bachelor apartment with assisted living. She was still alone with her confusion, only now in strange, unfamiliar surroundings and that set her off. Right from the first day I got desperate phone calls from her and realized we'd made a big mistake. Her problem wasn't that she couldn't live at home, but that she couldn't live alone. My four siblings weren't concerned at all. One brother said she was in the best possible place she could be.

That's how it went for almost four years, multiple phone calls daily from her out of loneliness or confusion, sometimes full of panic and fear, pleading to go home, and she got progressively worse. A few months ago, I had to cut back on my visits because it was so wrenching for her when I left. I filmed her despair to show my siblings how bad she'd become and it didn't faze them a bit.

My wife and I were willing to take her in but not by ourselves. It would have to be a collective effort and that was a non-starter with my siblings. So she stayed alone in her little room and her mental state kept declining.

The whole extended family is going along with it, even her beautiful, vibrant adult grandkids, as if it's the natural course of events that nothing can be done about, which leads me to wonder if I'm somehow wrong about it. Yet I can't get over the feeling that our mother was treated cruelly and inhumanely, regardless of their attitude.

There are plenty more twists and turns in the story but that's it in a nutshell. I don't have a specific question to ask but if anyone has any comments, suggestions, philosophical ways out of this mess, I'd appreciate it because I'm in kind of a mental tizzy about this. Thanks.

(Apologies if this is the wrong forum. Wasn't sure where to post it.)
 

Hi @Littlejohn,

My heart goes out to you and your mother.

Is there a chance that you can get a nurse or care team to visit her daily and help out?
Over here we have government care teams to help as well as Baptist care and Anglican care.

We also have 6 to 8 weeks of respite available in a year, whereas if she was living with you, you could take advantage of this service. It would be something to look into.

By the way, Welcome to Seniors Forum.

Gdaywelcome.gif
 
I'm sorry you are experiencing what I never did. Alzheimers took my mother in 9 months. You've had to suffer years, as she's also suffered.

How is it that one child out of many cares so much? My younger sister was Mom's favorite, but damned if she'd spend 2 hours with her.

She's obviously lonely, scared and confused. I have to say she "Might" be better with you, but that's a HUGE undertaking and since siblings aren't willing to help, it's probably for the best she remain there, well cared for.
 

Littlejohn: Very stressful situation for you.

One of my aunts was in a nursing home and she complained about the same issues as your mom. One of the sons set up a "hidden" video camera in her suite and it recorded a care aid swearing and treating her roughly (did not get the details.) The family hired an "independent" carer to assist my aunt with daily care and meals. I was not privy to the information regarding the care aid.
 
Disgustedman said:
She's obviously lonely, scared and confused. I have to say she "Might" be better with you, but that's a HUGE undertaking and since siblings aren't willing to help, it's probably for the best she remain there, well cared for.
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That's another twist in the story. She's in the hospital right now with a gallbladder infection. I found her in her room semi-conscious, cadaverous mouth hanging open and struggling for breath, just like my dad looked in his last days. When I found the nurse, it turned out she knew about it and had scheduled her to see the doctor on his weekly visit the next night!!!! I had to tell her to call an ambulance right now. At the hospital, she pulled through but just barely, her medical team said. Now I hear that my brother, the designated family contact at the home, intends to put her back there if she's able.

When the paramedics were getting ready to tend to her, they had a copy of her living will which states no revival by mechanical or electrical means. One of them said that giving her IV fluids might fall under that so I had to decide on the spot what to do. It was 50/50 in my mind but I decided for the safe route and told them to give her the fluids. Now a part of me feels guilty for continuing her wretched life.
 
Littlejohn said:
That's another twist in the story. She's in the hospital right now with a gallbladder infection. I found her in her room semi-conscious, cadaverous mouth hanging open and struggling for breath, just like my dad looked in his last days. When I found the nurse, it turned out she knew about it and had scheduled her to see the doctor on his weekly visit the next night!!!! I had to tell her to call an ambulance right now. At the hospital, she pulled through but just barely, her medical team said. Now I hear that my brother, the designated family contact at the home, intends to put her back there if she's able.

When the paramedics were getting ready to tend to her, they had a copy of her living will which states no revival by mechanical or electrical means. One of them said that giving her IV fluids might fall under that so I had to decide on the spot what to do. It was 50/50 in my mind but I decided for the safe route and told them to give her the fluids. Now a part of me feels guilty for continuing her wretched life.
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I'm so sorry, and I have nothing constructive to say to you , so I won't waste your time.. but reading this is heartbreaking.

Your poor mother clearly didn't want to live in a wretched state in her old age.. hence the living will instructions, yet here she is, begging and desperate because aside from yourself, she's living in exactly that manner.. Poor , poor lady.. mother to those who don't care enough about the woman who raised them,.. I'm so sorry, I hope she gets peace in her last short time on this earth.. my heart goes out to you and to her!!
 
I am sorry to hear of your situation.

The problem with dementia, falls, and resulting injuries is that they will keep happening since the person does not remember that they no longer can walk unassisted. This happened with my mom and the only two options were to hire a private nurse for 2 shifts a day or a nursing home. My father was able and willing to watch over my mom but he could not do it 24 hours a day. Due to cost, my mom went to a nursing home. My dad visited her daily, but she never accepted being there.
 
hollydolly said:
I'm so sorry, and I have nothing constructive to say to you , so I won't waste your time.. but reading this is heartbreaking.

Your poor mother clearly didn't want to live in a wretched state in her old age.. hence the living will instructions, yet here she is, begging and desperate because aside from yourself, she's living in exactly that manner.. Poor , poor lady.. mother to those who don't care enough about the woman who raised them,.. I'm so sorry, I hope she gets peace in her last short time on this earth.. my heart goes out to you and to her!!
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I can't say how much it means to finally hear words of sympathy. Thanks for that, and to everyone else. My mother is scheduled for an assessment to see which level of care she'll need now and I'll have to move from there.

There was an earlier post here from "Bella" which seems to have disappeared. I wanted to say that she encapsulated the situation perfectly, particularly about the family.
 
Littlejohn, welcome to the forum, hopefully you will get some advice to suit your needs here.

Your mother is almost 95 now with dementia which likely is making her fearful of the situation she is in. What memories she has of her old home are good ones and the reason she wants to return. But you know that is not possible and maybe a small feeling of guilt that you cannot change that. But do NOT feel any guilt, your siblings are the ones that should hang their head in shame.

Do you feel she is in a good place, is the place clean? Is the staff caring? Good Food? If you can answer yes to these questions then you are still willing to visit or phone her then you have done your part. Be proud of yourself and give yourself a pat on the back for a job well done.
 
Michael Z said:
I am sorry to hear of your situation.

The problem with dementia, falls, and resulting injuries is that they will keep happening since the person does not remember that they no longer can walk unassisted. This happened with my mom and the only two options were to hire a private nurse for 2 shifts a day or a nursing home. My father was able and willing to watch over my mom but he could not do it 24 hours a day. Due to cost, my mom went to a nursing home. My dad visited her daily, but she never accepted being there.
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Thanks. My mother always resented being told that her memory was failing. "I know what I can and can't remember!" I can understand your mother not being able to accept the new "home" she never asked for. It's a huge upheaval in your life at a time when you're weak and vulnerable.
 
You can get your mom a social worker through Senior Services, either through the care facility or from the senior services website. Generally, these social workers check to make sure mom's safe and getting adequate care, plus they make sure she knows what services and activities the facility offers, and encourage her to participate in the activities and also to make friends.

Now the following suggestion might sound strange, but - if your mom loves children, specifically babies, I've heard of people giving moms in this same situation a "Reborn Doll." These are actual baby dolls that are very realistic. They don't have sound, they just look and feel like real babies. They're used in Alzheimer's therapy. The patients care for them and hold them and talk to them. They're kind of expensive, but if they cure mom's loneliness and bring her comfort, it would be worth it.

You can check 'em out here https://www.reborndollsshop.com/
 
Lee said:
Littlejohn, welcome to the forum, hopefully you will get some advice to suit your needs here.

Your mother is almost 95 now with dementia which likely is making her fearful of the situation she is in. What memories she has of her old home are good ones and the reason she wants to return. But you know that is not possible and maybe a small feeling of guilt that you cannot change that. But do NOT feel any guilt, your siblings are the ones that should hang their head in shame.

Do you feel she is in a good place, is the place clean? Is the staff caring? Good Food? If you can answer yes to these questions then you are still willing to visit or phone her then you have done your part. Be proud of yourself and give yourself a pat on the back for a job well done.
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Thank you, Lee. The home she was in was clean and modern but it almost killed her through incompetence (see post #5). I hope she'll be eligible to enter a nursing home when she gets out of the hospital.
 
I know this is so hard for you. My story is that my grandma stayed with us for awhile but it got to the point where she would be wandering about while we were asleep, peeing/pooping in her bed, hitting my mom while mom was trying to clean her up. It got to be just too much and this was while both parents were still working. Grandma was put into a care home run by the Polish nuns. They were wonderful these nuns, thank God.
 
Murrmurr said:
You can get your mom a social worker through Senior Services, either through the care facility or from the senior services website. Generally, these social workers check to make sure mom's safe and getting adequate care, plus they make sure she knows what services and activities the facility offers, and encourage her to participate in the activities and also to make friends.

Now the following suggestion might sound strange, but - if your mom loves children, specifically babies, I've heard of people giving moms in this same situation a "Reborn Doll." These are actual baby dolls that are very realistic. They don't have sound, they just look and feel like real babies. They're used in Alzheimer's therapy. The patients care for them and hold them and talk to them. They're kind of expensive, but if they cure mom's loneliness and bring her comfort, it would be worth it.

You can check 'em out here https://www.reborndollsshop.com/
Click to expand...
The home she was in was supposed to do all that but my mother wasn't one for group activities and such. She didn't like going to the communal dining room at mealtimes because her tablemates were strange or would do things she objected to. She expected normal conversation from them without realizing they were handicapped, and without realizing that she herself could be difficult to converse with.

First I've heard of reborn dolls but it's definitely worth a shot. She does love babies. Her home allows pet cats but she thought it would be too much work. But a reborn doll might work. Thanks for the suggestion.
 
Littlejohn, from experience, I'll say that the assisted living place might not want to take her back, saying that she needs more care than they can give her.

If so, the hospital will try to get you or one of your sibs to take her, at least "temporarily". Don't do it. Taking her from the hospital removes their motivation to find a nursing home for her to be released to. They'll tell you to just take her home for a few days and then check her into a nursing home if it doesn't work out. Again, don't do it. It's much harder to get into a nursing home on your own than from a hospital.

If she is released into a nursing home after at least three days in a hospital, Medicare will cover a certain number of days in the nursing home. If she goes home for a while, I think the patient has to pay or go on Medicaid.

Keep using the words, "I AM NOT ABLE TO TAKE CARE OF HER" and "SHE'S NOT ABLE TO CARE FOR HERSELF" and "SHE NEEDS MORE CARE THAN SHE'S GETTING AT THE ASSISTED LIVING" over and over again. Rinse and repeat. They'll try to beat you down, but you have time on your side.

It sounds heartless, but if you take her home with you, she'll likely not be any happier at your house. And, in time, this will affect your marriage, your health and your well-being. A social worker told my mom years ago that if she brought my grandmother with dementia home to live with her, my grandmother would still be living in five years and my mom would be dead. My mom brought her home anyway and it was too hard on my dad.
 
Littlejohn said:
Hi. I'm a 71-year-old senior who has actually come here for my mother, specifically about how she has lived for the last four years, and I'm in a quandary about it.
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Hey @Littlejohn welcome to the forum!

I feel for you, there are some parallels between your story and what happened with my father. I guess the lesson I learned from that is that you can't rely on other family members for help of this kind. Sometimes it happens, but often not. You just need to decide for yourself what you are willing to do and do it. Nothing wrong with asking others to pitch in, but don't be too surprised when it doesn't happen. And try not to let it damage your relationships... that can sometimes be hard, but it is important.

You've gotten some very good specific advice above, maybe that will help. Best of luck to you with it.
 
Happy Retiree said:
I know this is so hard for you. My story is that my grandma stayed with us for awhile but it got to the point where she would be wandering about while we were asleep, peeing/pooping in her bed, hitting my mom while mom was trying to clean her up. It got to be just too much and this was while both parents were still working. Grandma was put into a care home run by the Polish nuns. They were wonderful these nuns, thank God.
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Yes, my mother needs help now with the toilet and bathing. There's a point where it becomes too much. She got around with a walker but she'll probably be in a wheelchair now.
 
jujube said:
Littlejohn, from experience, I'll say that the assisted living place might not want to take her back, saying that she needs more care than they can give her.

If so, the hospital will try to get you or one of your sibs to take her, at least "temporarily". Don't do it. Taking her from the hospital removes their motivation to find a nursing home for her to be released to. They'll tell you to just take her home for a few days and then check her into a nursing home if it doesn't work out. Again, don't do it. It's much harder to get into a nursing home on your own than from a hospital.

If she is released into a nursing home after at least three days in a hospital, Medicare will cover a certain number of days in the nursing home. If she goes home for a while, I think the patient has to pay or go on Medicaid.

Keep using the words, "I AM NOT ABLE TO TAKE CARE OF HER" and "SHE'S NOT ABLE TO CARE FOR HERSELF" and "SHE NEEDS MORE CARE THAN SHE'S GETTING AT THE ASSISTED LIVING" over and over again. Rinse and repeat. They'll try to beat you down, but you have time on your side.

It sounds heartless, but if you take her home with you, she'll likely not be any happier at your house. And, in time, this will affect your marriage, your health and your well-being. A social worker told my mom years ago that if she brought my grandmother with dementia home to live with her, my grandmother would still be living in five years and my mom would be dead. My mom brought her home anyway and it was too hard on my dad.
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I'm not sure that I could legally take her home to live now. There's a facility that takes in people who are waiting for a permanent home but that's for the worst cases and I don't think she's there yet. An assessment before she leaves the hospital will determine that. So much is up in the air right now.

Thanks for the sage advice.
 
Alligatorob said:
Hey @Littlejohn welcome to the forum!

I feel for you, there are some parallels between your story and what happened with my father. I guess the lesson I learned from that is that you can't rely on other family members for help of this kind. Sometimes it happens, but often not. You just need to decide for yourself what you are willing to do and do it. Nothing wrong with asking others to pitch in, but don't be too surprised when it doesn't happen. And try not to let it damage your relationships... that can sometimes be hard, but it is important.

You've gotten some very good specific advice above, maybe that will help. Best of luck to you with it.
Click to expand...
Thanks. I've finally given up on my siblings after four years. It was hard wrapping my head around their lack of caring. I never would have thought they could be so heartless. It was like discovering after all these years that they're secret neo-nazis. Now I'm not ruling that out.
 
Littlejohn said:
When the paramedics were getting ready to tend to her, they had a copy of her living will which states no revival by mechanical or electrical means. One of them said that giving her IV fluids might fall under that so I had to decide on the spot what to do. It was 50/50 in my mind but I decided for the safe route and told them to give her the fluids. Now a part of me feels guilty for continuing her wretched life.
Click to expand...
NHM. Means "Extraordinary" measures as defined by using electrical application for restarting heart, or for a machine to breathe for her.

Remember, it's for "Revival" and she wasn't dead yet. Just having fluids inserted as she's not able to drink or take fluids isn't "Heroic Menthods"

Still I understand how heart wrenching it is. I just recently spoke with one caretaker here, his uncle was in hospice, but they'd cut off fluids and he gave him some water.

The staff freaked out and he said "He asked for water, I won't make a dying man suffer"( the uncle passed 2 days later)
 
It's good of you that you want to take your mother in. But you are right, you can't do it alone. It also sounds, no matter how much she wanted it and how much you wanted it, for her to have remained in her home. Many seniors with dementia want to go home. Yet they can get to the point that they don't recognize the home they lived in for years. They may revert to a home they can no longer see in their mind or their childhood home. It's not uncommon for someone with dementia to think their child is their mother, father, sister, brother. Because they have gone back that far.

It's also common for the burden to go to one person. Believe me, I know. She may need long term care. She may not be happy. Perhaps some medications can help but those are highly regulated in nursing homes. Sometimes end of life is messy like this. The lucky ones go in their sleep before they get too bad or just go really quickly. Don't put the burden on you that you can fix this because you can't.
 
Disgustedman said:
NHM. Means "Extraordinary" measures as defined by using electrical application for restarting heart, or for a machine to breathe for her.

Remember, it's for "Revival" and she wasn't dead yet. Just having fluids inserted as she's not able to drink or take fluids isn't "Heroic Menthods"

Still I understand how heart wrenching it is. I just recently spoke with one caretaker here, his uncle was in hospice, but they'd cut off fluids and he gave him some water.

The staff freaked out and he said "He asked for water, I won't make a dying man suffer"( the uncle passed 2 days later)
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It was the paramedic who brought it up and she gave me the choice so I followed her lead. They recognized right away that my mother was near the point of no return and they knew her mental condition. It's occurred to me that she might have been stretching the rules to give me a chance for a merciful end. If she was, I didn't take it and now I regret it.

When they were ready to wheel her out of the room, the other paramedic said I could follow them to the hospital where I'd "have some tougher choices to make".

And good for the caretaker.:)
 

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