Quality of life

There are all kinds of issues tied to this but I wanted to float this out to the forum and get some feedback.

As some of you know, I have been caring for an elderly couple (now just the husband as the wife passed away in March). The couple had no children and the only family left was a sister back east who wasn't really set up to help out. I'll leave most of the back story out but the current situation is that M, now a widower, is in assisted living. He has some left side paralysis due to a stroke and was bound to a wheelchair for a few months. We (including physical therapists) didn't really think he'd walk on his own again but he has gained strength and can now ambulate with a cane at least for short distances. This has made him VERY happy and is important to his perception of his quality of life. It may be, in fact, the most important factor in his perception of quality of life.

Anyway, he is in a controlled access facility because he has a propensity to wander off. He scared the heck out of a nurse who took him to a doctor's appointment by wandering off and he was found a block away from the clinic. He is also unstable on his feet but, at least around the complex, hasn't fallen while walking. He even did an entire day at the fair using just his walker (he refused to use the wheelchair that I recommended). It's not that he can't walk, it's just that he scares the dickens out of everyone around him when he does.

Today's situation is that one of the nurses came to pick him up for a doctor's appointment. She insisted that he use a walker. He refused. I don't know much in the way of details beyond that but the nurse claims that she felt threatened by him. I haven't heard his side yet.

While I COMPLETELY understand the concerns others have regarding his mobility I feel a responsibility to address the matter based on his perception of quality of life first and his safety second. While he does have some moderate dementia he is still cognitively aware of what he's doing and the risks involved. At worst, he perceives his ability to walk unassisted as being more substantial than it actually is. I guess what I'm looking for is feedback as to whether any of you have been in this kind of situation and how you handled it. Per usual, this request for feedback comes after I made my decision but what the heck, I'm listening anyway.

Lutherf said:

There are all kinds of issues tied to this but I wanted to float this out to the forum and get some feedback.

As some of you know, I have been caring for an elderly couple (now just the husband as the wife passed away in March). The couple had no children and the only family left was a sister back east who wasn't really set up to help out. I'll leave most of the back story out but the current situation is that M, now a widower, is in assisted living. He has some left side paralysis due to a stroke and was bound to a wheelchair for a few months. We (including physical therapists) didn't really think he'd walk on his own again but he has gained strength and can now ambulate with a cane at least for short distances. This has made him VERY happy and is important to his perception of his quality of life. It may be, in fact, the most important factor in his perception of quality of life.

Anyway, he is in a controlled access facility because he has a propensity to wander off. He scared the heck out of a nurse who took him to a doctor's appointment by wandering off and he was found a block away from the clinic. He is also unstable on his feet but, at least around the complex, hasn't fallen while walking. He even did an entire day at the fair using just his walker (he refused to use the wheelchair that I recommended). It's not that he can't walk, it's just that he scares the dickens out of everyone around him when he does.

Today's situation is that one of the nurses came to pick him up for a doctor's appointment. She insisted that he use a walker. He refused. I don't know much in the way of details beyond that but the nurse claims that she felt threatened by him. I haven't heard his side yet.

While I COMPLETELY understand the concerns others have regarding his mobility I feel a responsibility to address the matter based on his perception of quality of life first and his safety second. While he does have some moderate dementia he is still cognitively aware of what he's doing and the risks involved. At worst, he perceives his ability to walk unassisted as being more substantial than it actually is. I guess what I'm looking for is feedback as to whether any of you have been in this kind of situation and how you handled it. Per usual, this request for feedback comes after I made my decision but what the heck, I'm listening anyway.

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I had a left total hip in 2013 and the other in 2017. Ever since the first surgery and recovery, I have had to use a cane. The right hip was a much faster recovery and there are no ill effects. I feel that there was some reason for the need of a cane to walk, but cannot and will not submit to another surgery at this stage (66). Same surgeon did both. I tell that as background to why I need a cane to walk. I can get around the house without it and around the property in small bursts. Without the stick, I tire easily and muscles rebel. Most mornings the missus and I walk the dog around a mile or so. Recently I have good and better days. Some days I stop for short breathers more than once or twice. As to public perception, I have gotten over most of my self consciousness, not all. Some folks make a point to hold a door and some don’t even notice. I played the ‘game’ long ago, of “hit the guy with the cane for extra points”, and can now hear drivers (imagined) say the same when I am in a Xwalk. There is a quality of life issue in my case as when it comes the time for the walker or the wheelchair, as it will if I live long enough. Not certain how I will handle that. Independence, driving, walking and making decisions for yourself are very important. Not sure if I have helped your situation, as you have made your decision. Is it reversible?

Rexedgar said:

I had a left total hip in 2013 and the other in 2017. Ever since the first surgery and recovery, I have had to use a cane. The right hip was a much faster recovery and there are no ill effects. I feel that there was some reason for the need of a cane to walk, but cannot and will not submit to another surgery at this stage (66). Same surgeon did both. I tell that as background to why I need a cane to walk. I can get around the house without it and around the property in small bursts. Without the stick, I tire easily and muscles rebel. Most mornings the missus and I walk the dog around a mile or so. Recently I have good and better days. Some days I stop for short breathers more than once or twice. As to public perception, I have gotten over most of my self consciousness, not all. Some folks make a point to hold a door and some don’t even notice. I played the ‘game’ long ago, of “hit the guy with the cane for extra points”, and can now hear drivers (imagined) say the same when I am in a Xwalk. There is a quality of life issue in my case as when it comes the time for the walker or the wheelchair, as it will if I live long enough. Not certain how I will handle that. Independence, driving, walking and making decisions for yourself are very important. Not sure if I have helped your situation, as you have made your decision. Is it reversible?

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Sure it's reversible but in reading your story, I'm actually encouraged that I made the right choice. Seems to me that you want to make your own decisions for as long as you can too.

The only way the decision will become irreversible is if M takes a spill and breaks something. I think, however, that he understand that as well as I do and accepts the risk.

Lutherf said:

There are all kinds of issues tied to this but I wanted to float this out to the forum and get some feedback.

As some of you know, I have been caring for an elderly couple (now just the husband as the wife passed away in March). The couple had no children and the only family left was a sister back east who wasn't really set up to help out. I'll leave most of the back story out but the current situation is that M, now a widower, is in assisted living. He has some left side paralysis due to a stroke and was bound to a wheelchair for a few months. We (including physical therapists) didn't really think he'd walk on his own again but he has gained strength and can now ambulate with a cane at least for short distances. This has made him VERY happy and is important to his perception of his quality of life. It may be, in fact, the most important factor in his perception of quality of life.

Anyway, he is in a controlled access facility because he has a propensity to wander off. He scared the heck out of a nurse who took him to a doctor's appointment by wandering off and he was found a block away from the clinic. He is also unstable on his feet but, at least around the complex, hasn't fallen while walking. He even did an entire day at the fair using just his walker (he refused to use the wheelchair that I recommended). It's not that he can't walk, it's just that he scares the dickens out of everyone around him when he does.

Today's situation is that one of the nurses came to pick him up for a doctor's appointment. She insisted that he use a walker. He refused. I don't know much in the way of details beyond that but the nurse claims that she felt threatened by him. I haven't heard his side yet.

While I COMPLETELY understand the concerns others have regarding his mobility I feel a responsibility to address the matter based on his perception of quality of life first and his safety second. While he does have some moderate dementia he is still cognitively aware of what he's doing and the risks involved. At worst, he perceives his ability to walk unassisted as being more substantial than it actually is. I guess what I'm looking for is feedback as to whether any of you have been in this kind of situation and how you handled it. Per usual, this request for feedback comes after I made my decision but what the heck, I'm listening anyway.

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I think he should live his life on his own terms and agree with your conclusions... I don't think he should be compelled to use a walker unless it's his idea and I think the nurse and all other interested parties need to respect that.

Lutherf said:

There are all kinds of issues tied to this but I wanted to float this out to the forum and get some feedback.

As some of you know, I have been caring for an elderly couple (now just the husband as the wife passed away in March). The couple had no children and the only family left was a sister back east who wasn't really set up to help out. I'll leave most of the back story out but the current situation is that M, now a widower, is in assisted living. He has some left side paralysis due to a stroke and was bound to a wheelchair for a few months. We (including physical therapists) didn't really think he'd walk on his own again but he has gained strength and can now ambulate with a cane at least for short distances. This has made him VERY happy and is important to his perception of his quality of life. It may be, in fact, the most important factor in his perception of quality of life.

Anyway, he is in a controlled access facility because he has a propensity to wander off. He scared the heck out of a nurse who took him to a doctor's appointment by wandering off and he was found a block away from the clinic. He is also unstable on his feet but, at least around the complex, hasn't fallen while walking. He even did an entire day at the fair using just his walker (he refused to use the wheelchair that I recommended). It's not that he can't walk, it's just that he scares the dickens out of everyone around him when he does.

Today's situation is that one of the nurses came to pick him up for a doctor's appointment. She insisted that he use a walker. He refused. I don't know much in the way of details beyond that but the nurse claims that she felt threatened by him. I haven't heard his side yet.

While I COMPLETELY understand the concerns others have regarding his mobility I feel a responsibility to address the matter based on his perception of quality of life first and his safety second. While he does have some moderate dementia he is still cognitively aware of what he's doing and the risks involved. At worst, he perceives his ability to walk unassisted as being more substantial than it actually is. I guess what I'm looking for is feedback as to whether any of you have been in this kind of situation and how you handled it. Per usual, this request for feedback comes after I made my decision but what the heck, I'm listening anyway.

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You are asking for feedback, here is mine. You stated he was "elderly".


Let him do for himself what he can for each day. There are risks involved sure but we all face risks each day. Unless you wrap yourself up in bubble wrap live in a bubble and never go anywhere regardless of age we face risks. At some point he may spend his last days in a wheelchair but I say don't rush it. Let him do whatever he can muster each day, one day at a time.





Growing old is not easy with your parts wearing out but one needs to do what they can each day or they have nothing to look forward to and instead just sit around waiting to not wake up the next day and that ain't living.

vesper said:

You are asking for feedback, here is mine. You stated he was "elderly".


Let him do for himself what he can for each day. There are risks involved sure but we all face risks each day. Unless you wrap yourself up in bubble wrap live in a bubble and never go anywhere regardless of age we face risks. At some point he may spend his last days in a wheelchair but I say don't rush it. Let him do whatever he can muster each day, one day at a time.





Growing old is not easy with your parts wearing out but one needs to do what they can each day or they have nothing to look forward to and instead just sit around waiting to not wake up the next day and that ain't living.

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That's part of it too, Vesper. In the past several months he's lost his ability to drive, his ability to live at home and his wife. He doesn't have much left to lose and I'll be damned if I'll be the one to take what's left away from him.

Lutherf said:

That's part of it too, Vesper. In the past several months he's lost his ability to drive, his ability to live at home and his wife. He doesn't have much left to lose and I'll be damned if I'll be the one to take what's left away from him.

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Good for you Luther.....good for you.

My mother faces a somewhat similar situation. She's a nonagenarian with dementia and other health issues.

While he does have some moderate dementia he is still cognitively aware of what he's doing and the risks involved.

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In dealing with Momma's declining mental acuity, I observed that she could "keep it together" and seem to comprehend abstract things such as safety in general and what makes sense and what doesn't for brief periods; however, her ability to do so has continually deteriorated over time.

In her late 80s, she went through a period of a couple years when she was supposed to use her walker around the house, but feeling safe in her own home, she just wouldn't; consequently, she'd fall. Momma was lucky in that she had no bad falls, but Lord knows she had plenty of them. At that time, she still had the strength to get up and move about on her own regardless of whether anyone was there and she wouldn't call for help and she wouldn't use her walker or cane.

Momma wasn't resistant to using her mobility aids when she was leaving the house. The problem we had with her was her not using them in the house. She never did get to the point whereby she'd use her mobility aids in her house. She would use them when she visited my house, but that was a rare thing by the time she'd gotten to the point of needing mobility aids because I go home to see her.

As it became clear that her balance and strength were ebbing, we put her on a physical therapy regimen. The therapy helped for a bit, and her live-in housekeeper helped out as best she could for as long as she could. Eventually, however, we had to get trained geriatric caregivers to come in and be with Momma all day everyday when Momma's needs -- between what she couldn't do and what she could do but just wouldn't -- became too much for the housekeeper to handle. Even with the home health aides, we took the approach of reacting to her rather than forcing her to take proactive measures for her own safety.

Momma's strength eventually declined to the point that she simply couldn't move about on her own even if she wanted to. That's when she stopped fussing about using the cane, walker and eventually wheelchair. Now she's still living at home and the housekeeper and nursing aides are always there. Once the aide has her strapped into her chair, Momma scoots about the house as she likes, and, weather permitting, goes onto the deck, patio, porch, etc. and into the yard to cut flowers from time to time, though often enough she just goes outside and naps, though the aides generally make sure her napping happens on the porch more so than actually outside. She pots plants when she feels like it, reads the paper and sleep-watches a lot of television. The aides help her move from her wheelchair to other chairs, sofas, etc.

one of the nurses came to pick him up for a doctor's appointment. She insisted that he use a walker. He refused.

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You may want to try having him stick to being in a wheelchair if he can get around his home easily enough on his own that way, he may cotton to just doing so. Dad didn't object to the wheelchair at all. He knew he was comfortable sitting and that walking was a strain. He actually became more active/mobile when he transitioned to the wheelchair. He was able to mostly move from the wheelchair to other seats -- in the house and even to the car -- but walking took some effort, so when he walked to any seat, he pretty much stayed there longer than he really wanted to. Being a man and having long been the provider, he didn't want to feel like he was a burden on anyone and he didn't want to look weak, which he didn't except when he was trying to move about.

this request for feedback comes after I made my decision but what the heck, I'm listening anyway.

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So what did we do? For the most part, we let Momma and Dad do what they wanted to do they way they wanted to do it until it became clear in their own minds that they needed to do things differently from what they'd done all their lives.

One thing I'll tell you is that we started using a home health aid company. They weren't at all willing to take the reactive approach described above; they said their company wouldn't let them. We eventually switched to independent nurses who were willing to contract to do so. I had to have the lawyer draw up a contract whereby we waived the right to sue them if Momma hurt herself by acting on her own. That worked well enough for them and for me and my siblings because we'd long ago installed cameras in the house so we could monitor Momma.

At the end of the day, unless one is going to sedate an old person in a full-on nursing facility, one can only do what one can and, more importantly, what they'll let one do.