Quandary about my mother's situation

Remy said:
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.
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Thank you for that. My mother remembers the house and address where she grew up but not the house where she raised a family. Someone told me that the home they see is a vague abstraction, not an actual home they would know, but who really knows, I guess.

So far she has mistaken me for her husband, her father and her grandfather, in that order. My wife said I must be aging really fast.

"Don't put the burden on you that you can fix this because you can't." That hit home. Thanks.
 

My health kept me from being able to be complete caregiver for my mother. My siblings h were of no help. I had that the last year of your life was so painful for her. I was working on moving her when she got sick and passed weeks later in hospital. I was going to place her in a local nursing home and hire a CNA privately to sit with her daily. I always will wonder if that would have worked.
 
Littlejohn said:
Thank you for that. My mother remembers the house and address where she grew up but not the house where she raised a family. Someone told me that the home they see is a vague abstraction, not an actual home they would know, but who really knows, I guess.

So far she has mistaken me for her husband, her father and her grandfather, in that order. My wife said I must be aging really fast.

"Don't put the burden on you that you can fix this because you can't." That hit home. Thanks.
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Littlejohn... please take time to watch the Dementia Expert Teepa Snow she will describe all the different levels of Dementia and the effects and how to deal with it.....she has many, many video's on Youtube covering every aspect of Dementia




late stage Dementia..

 

JL.Holden said:
My health kept me from being able to be complete caregiver for my mother. My siblings h were of no help. I had that the last year of your life was so painful for her. I was working on moving her when she got sick and passed weeks later in hospital. I was going to place her in a local nursing home and hire a CNA privately to sit with her daily. I always will wonder if that would have worked.
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I'm sorry to hear that. It's a tough time for everyone as it is, and tougher when siblings don't pull their weight.
 
hollydolly said:
Littlejohn... please take time to watch the Dementia Expert Teepa Snow she will describe all the different levels of Dementia and the effects and how to deal with it.....she has many, many video's on Youtube covering every aspect of Dementia




late stage Dementia..

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Thanks for that. I'll save them for a little later when everything here settles down. I have a lot to learn about it.
 
Dementia is a cruel horrible disease. I was the guardian for a good friend of mine when her husband died and she didn’t have close enough family to take over. I had to put her in a facility and she was unhappy. I was happy for her when her cancer came back and I didn’t treat it.

Mostly she was miserable despite taking meds and would pace for hours and couldn’t sleep very long. I can say from personal experience as a social worker that you are too old to care for your mom without your health suffering. For some reason it’s usually one child that the burden of caring for a parent falls on. You sound like a very loving son.

I would visit often now because the end is near and she will feel your presence even if she appears not to. End of life decisions are so heavy to carry. Just know that you are making decisions from your heart and love for your mom.
 
hearlady said:
I was told once that when someone has dementia it won't matter where they are because they really don't know. It's important that they're in a good facility with staff that's well trained.
I agree with @jujube 's post.
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I respectfully disagree with that "it won't matter..." statement. Dementia is not like an even downhill slope. It zigs and zags, goes up and down - one day (or one hour) the person is fine, right there with you...and then it fades and you're back at the repetitive questions and anxious confusion.

A neat, consistent environment and regular schedule are helpful to those with dementia. Because they are easily prone to visual confusion - from the face of a sibling to a familiar word in a different font, to being able to tell a red tomato from a red bell pepper - this is why the recommendation is to move the person earlier to a good care facility, rather than later when the dementia has worsened and change greatly increases the anxiety/fear factor.

It is unfortunately true that with multiple siblings, most will not "step up" to help out. In a way it was easier with my MIL as my spouse was an only child, so both of us worked together to find her the best possible facility that could care for her both immediately and in the future, without her having to change facilities. But it was not easy, and it took more time than one might think.
 
Just one thing to chime in here with-- I'm sorry about your seemingly impossible situation. I wanted my Mom with me, in her last years, and my older sister would hear nothing of it, and put her in a small residential home (5 patients in regular house - called A Place for Mom back then) . She died alone and I regret that to this day. But I would have had to go to court against my sister to change it.

The thing I can really help with is this- YOU DON'T NEED TO SPEND YOUR MONEY ON A REBORN DOLL. I think a doll is definitely worth trying, but just go to Target or Walmart or wherever and get a fairly realistic doll. A doll, a sleeper (pajamas) and a blanket. It's worth a shot. It might settle her, and bring her comfort.
 
Teacher Terry said:
Dementia is a cruel horrible disease. I was the guardian for a good friend of mine when her husband died and she didn’t have close enough family to take over. I had to put her in a facility and she was unhappy. I was happy for her when her cancer came back and I didn’t treat it.

Mostly she was miserable despite taking meds and would pace for hours and couldn’t sleep very long. I can say from personal experience as a social worker that you are too old to care for your mom without your health suffering. For some reason it’s usually one child that the burden of caring for a parent falls on. You sound like a very loving son.

I would visit often now because the end is near and she will feel your presence even if she appears not to. End of life decisions are so heavy to carry. Just know that you are making decisions from your heart and love for your mom.
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Thank you for that. It's good to know that there are people out there who understand.
 
Lethe200 said:
A neat, consistent environment and regular schedule are helpful to those with dementia. Because they are easily prone to visual confusion - from the face of a sibling to a familiar word in a different font, to being able to tell a red tomato from a red bell pepper - this is why the recommendation is to move the person earlier to a good care facility, rather than later when the dementia has worsened and change greatly increases the anxiety/fear factor.

It is unfortunately true that with multiple siblings, most will not "step up" to help out. In a way it was easier with my MIL as my spouse was an only child, so both of us worked together to find her the best possible facility that could care for her both immediately and in the future, without her having to change facilities. But it was not easy, and it took more time than one might think.
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That is something I hadn't heard before and I wish I had. We waited way too long, as it turned out.

My mother had a stint in the hospital for a minor physical issue when it became obvious that she couldn't live at home. The change knocked her for a loop. I watched her have a hallucination right beside me. So what did we do? Moved her to a different place, which was only temporary until a slightly better, and different, place was found, and always alone. She was put through the ringer without the ability to cope with it. There is something inherently wrong with that but is it actually necessary?

Another question I have is how much loneliness plays into it or affects it. She was lonely long before her memory started to go and that became acute as the months and years rolled by. I can't help but think that feeds or amplifies the problems with her mind.
 
Swirly said:
Just one thing to chime in here with-- I'm sorry about your seemingly impossible situation. I wanted my Mom with me, in her last years, and my older sister would hear nothing of it, and put her in a small residential home (5 patients in regular house - called A Place for Mom back then) . She died alone and I regret that to this day. But I would have had to go to court against my sister to change it.

The thing I can really help with is this- YOU DON'T NEED TO SPEND YOUR MONEY ON A REBORN DOLL. I think a doll is definitely worth trying, but just go to Target or Walmart or wherever and get a fairly realistic doll. A doll, a sleeper (pajamas) and a blanket. It's worth a shot. It might settle her, and bring her comfort.
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Thanks. It might be a moot point as my mother has taken a bit of a turn for the worse in the hospital but if she ends up well enough, I'll explore the options for a doll of some kind.
 
Someone in the family should take her in like my neighbor across the street who has taken in her 90+ year old mother. It has changed my neighbor's lifestyle somewhat, but one of her relations comes in evenings to visit and pinch hit's for her when my neighbor goes out of state to visit her kids.
 
Chet, people with Alzheimer’s often sleep during the day and are awake all night. It’s like having an adult size toddler. They can hallucinate, act out, get violent, most are afraid to shower or bathe and the healthy person ends up sick or if older dead due to stress.

Most people with dementia are impossible to keep home unless you have reliable people taking shifts. It’s a living hell for everyone.
Chet said:
Someone in the family should take her in like my neighbor across the street who has taken in her 90+ year old mother. It has changed my neighbor's lifestyle somewhat, but one of her relations comes in evenings to visit and pinch hit's for her when my neighbor goes out of state to visit her kids.
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Your story resonates with me Littlejohn and you have my sympathy.
My own mother died four years ago, seventeen years after Dad checked out. I was her live-in caregiver for those seventeen years while my two brothers refused to assist in any way at all.
The counsel given by a previous poster seems the most practical: If it isn't doable for you to look after your mother at home, then insist that the hospital's social workers find a suitable nursing home to accept her. I would think that you can take an active part in deciding what constitutes a suitable nursing home.
 
Please have a complete physical exam done by someone other than the facility doctor.
There are a myriad of things that could be causing the onset of worsening symptoms,including a UTI,very common in elderly folks,drugs that shouldn't be given together.
Sadly,most assisted living employees are overworked and underpaid and not always giving 100%
I do agree with the OP,don't waste money on those reborn dolls,which are crazy expensive,the real possibility of it being stolen are high.Its a good idea to just get a baby doll.
I worked in the memory care unit of a nursing home,it can be overwhelming,don't have any guilt over this,it becomes almost impossible to give care at home.
Good luck to you
 
Littlejohn said:
That is something I hadn't heard before and I wish I had. We waited way too long, as it turned out.
... Another question I have is how much loneliness plays into it or affects it. She was lonely long before her memory started to go and that became acute as the months and years rolled by. I can't help but think that feeds or amplifies the problems with her mind.
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You're right, unfortunately; lack of social interaction can worsen aging, both physically and mentally.

My MIL kept in close touch with her family by cellphone, but most of her friends had died or moved away. She had always depended upon her husband to be the social one, and without him she simply could not put forth the effort to be friends with people, even when THEY tried to be friends with HER.

She would smile and thank them and agree they "should get together" but she would never arrange anything, and if asked she would decline to go. She dutifully went to the senior centers twice a week, for over a year, but nothing changed.

The lack of social interaction was the reason I felt she was declining, and I insisted that she could not remain with us. Spouse and I live very differently, without a regular schedule and with lots of "alone time" where he's in his office and I'm in mine, during the entire day. Doesn't bother us but it was very hard on her.

The seniorcare facility we found for her had 210 residents and a staff of 125; a 5-acre closed (secure) campus nearby us, with its own senior center and a full schedule of activities every day. The food was excellent and there were residents who had been there for several decades but were still active and alert.

She improved noticeably after moving there. All her friends and family remarked to us that she seemed so much happier and more active than in recent years.

Being in a place she knew was "safe", with people her own age (and older!) who got her interested in other activities; staffed with friendly, kind workers who appreciated how cheerful and courteous she was; made us very thankful we 'bit the bullet' and were able to find her a home that fit with what she needed as well as what she wanted.

Littlejohn, I'm sorry it's been such a struggle for you and your mom. I wish you the best and hope that you can find an acceptable solution to this situation.
 
Littlejohn said:
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.
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Sorry but I don't agree. While I have the utmost sympathy for your situation which so many people are having to deal with, I think you and your siblings should put your own welfare first. Having to care full-time for an elderly parent can cause too much disruption to a household, and even break up a marriage. The grandchildren will be ashamed to bring their friends home, in case grandma causes embarrassment. It isn't fair that you are the one dealing with this burden, but don't condemn your siblings.
 
I don't think the move to assisted living was a factor. The main issue is your mother's dementia. Unfortunately, there is little you can do to correct that. Every time she calls, it's the same conversation over and over again. It does seem that her nursing home has not addressed that issue. I suggest that If you find the nursing home lacking, I'd find another one that isn't so lax about their clients.
 
We are maybe all likely to face our own difficulties as we get older and less able to physically or mentally care for ourselves, (especially when there are no family members even likely to consider assisting us).
Its a sallutary lesson is all I can say.
 
Lavinia said:
Sorry but I don't agree. While I have the utmost sympathy for your situation which so many people are having to deal with, I think you and your siblings should put your own welfare first. Having to care full-time for an elderly parent can cause too much disruption to a household, and even break up a marriage. The grandchildren will be ashamed to bring their friends home, in case grandma causes embarrassment. It isn't fair that you are the one dealing with this burden, but don't condemn your siblings.
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That sounds good in principle but you don't know my siblings. After having the decision suddenly thrust on me to let my mother live or die, something that choked me up as I considered having to watch her die if I made that decision, I haven't heard a single word of gratitude or sympathy from them or even acknowledgement that it happened. The assisted living facility almost killed her through neglect and incompetence, and they want to put her back there when or if she recovers. That's after years of neglecting their mother and leaving it all to me. I find it very easy to condemn them.
 
Lethe200 said:
The lack of social interaction was the reason I felt she was declining, and I insisted that she could not remain with us. Spouse and I live very differently, without a regular schedule and with lots of "alone time" where he's in his office and I'm in mine, during the entire day. Doesn't bother us but it was very hard on her.

The seniorcare facility we found for her had 210 residents and a staff of 125; a 5-acre closed (secure) campus nearby us, with its own senior center and a full schedule of activities every day. The food was excellent and there were residents who had been there for several decades but were still active and alert.

She improved noticeably after moving there. All her friends and family remarked to us that she seemed so much happier and more active than in recent years.

Being in a place she knew was "safe", with people her own age (and older!) who got her interested in other activities; staffed with friendly, kind workers who appreciated how cheerful and courteous she was; made us very thankful we 'bit the bullet' and were able to find her a home that fit with what she needed as well as what she wanted.

Littlejohn, I'm sorry it's been such a struggle for you and your mom. I wish you the best and hope that you can find an acceptable solution to this situation.
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My mother was never interested in social activities at the home mostly because, I think, she couldn't be social. She quit going to the dining room for meals because her tablemates acted funny or didn't talk back to her, not realizing that they had their problems and that she herself could be difficult to communicate with. My guess is that she might have felt insecure in a different environment, but I don't know for sure. At any rate, she stayed alone in her little room for the most part.
 
Update: This afternoon, my mother's doctor at the hospital gave me the option to continue treatment or stop it and let her die. I faced the same decision 12 days ago and chickened out at the prospect of watching her die in front of me. This time I didn't hesitate. Her suffering had to end.

The doctor called ostensibly for consent to give her a blood transfusion. This would have been the second or third for her but it was the first time they asked for consent. I think it was their way of saying there wasn't much hope and it was time to have the conversation, for which I'm grateful. The doctor was very comfortable with the decision.

I want to thank everyone for having this conversation with me. It was hugely therapeutic for me to have your support and I really thank you all for it.

As for now, I'm only 71. I'd like to come back when I'm old.:)
 
I don't have advice, but I do have empathy for your situation. I'm sorry about this turn of events with your mother. I'm sure it is so difficult for you, but the last thing you should feel is guilt.

My mother began falling in her home, regularly taken to the hospital, so I had no choice but to move her into assisted living. She sat with her arms crossed at her kitchen table and said she was not going, but the staff and the residents there loved her and in the end she was happy. I'm an only child and took care of my mother (who didn't drive) for 21 years after my father passed away, so as I said I can empathize.

I have a good friend who took care of her aunt for many years. Her aunt developed Alzheimers and was in a home with Catholic nuns. She always carried a baby doll around, so I think there is something to this. My grandmother also had dementia and also had lots of dolls, which seemed to bring her happiness. Please do look into this.

I hope you find this forum a place where you can share what you are going through, seek advice and feel at least a bit of comfort. And welcome!
 
My heart breaks for you. Watching your own parents health rapidly decline can be devastating. It’s such a difficult thing to process. Everything seems to happen so fast.

It’s extra difficult if you have no family support . Just acknowledge that you put in every effort you could and there wasn’t anything more you could have possibly done.

This has been quite a journey and you should feel proud of yourself for being there for her in her most vulnerable time of need. That takes strength and courage. There’s so much to learn at such a fast pace that you can’t possibly keep up.

One thing that stands out while going through this is the message to take care of yourself. When you invest so much of yourself to care for another you might end up neglecting yourself. Hopefully now you can start doing just that. Forgive yourself for anything you think you did wrong. Feeling guilt is a common emotion for care givers. Let it go.

I’m really sorry you had to go through this.
Wishing you long lasting contentment
The baby doll idea is a good one and so is singing to her.

Take care
 

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