I need crowdsource advice re: dementia related 'wandering'

[wenchsenior]

My father is currently aging in place in his home, with on-site caregivers there 16 hours per day (not at night). He has repeatedly over the years made his wishes very clear re end of life: He absolutely does not want to be put in a facility as long as there is still money to support him at home (we have roughly 2-3 years' worth of funds for that).  He has severe active alcohol use disorder, and intends to continue drinking until it kills him. (He's been to many rounds of professional rehab (both court ordered and voluntary) and is no longer physically or cognitively capable of doing such a program even if he wanted to, so that's off the table).  His physical and cognitive abilities fluctuate wildly based on how much he's drunk, whether he's eating what the caregivers make, and also b/c he is in active liver failure (which has all kinds of bad physical and cognitive effects on its own). Some days he gets himself around the house, others he falls and shits himself repeatedly (hence the caregivers).

We are not interested in going against his longstanding wishes and putting him in a home. He understands the physical risks of his condition and choice (even now, on the days he is cogent, he absolutely does not want to go to the hospital for treatment for his failing liver). Even when he was repeatedly blacking out/passing out and waking up in his own shit, unable to feed himself, or bathe, he still resisted having caregivers (though he is clearly doing better overall now that he has them).

So my question isn't: what should we do with/about him? 

My question is this: He's taken to occasionally wandering outside and getting confused. This morning, his morning caregiver found him with frostbite, sitting in the snow on his front walk. He didn't remember why he was outside, nor why he didn't go back in the house (door was unlocked). 

We understand that his choices over the past few years mean he could very easily die in such a way, or in another sudden way (e.g., falling down his basement steps).  He expressed understanding of this as well, as recently as just a couple months ago (when his mental functioning was a bit better).  Part of me wishes he'd wandered out last night and just fallen asleep and frozen to death, which is a much easier death than the final ugly stage of liver failure that he's heading for right now. It's even possible that he subconsciously went outside seeking such a death.

We are solid on the overall ethics of keeping him at home, but from a basic safety perspective, we are going to need to install some kind of alert system either on him or the door (preferably the door) that indicates when someone goes in or out during that window of time at night that the caregivers aren't there. If nothing else we need this so that the caregivers don't struggle with guilt if they come to find him dead in the driveway some morning, and can feel like all reasonable bases are covered, so to speak.

Does anyone have experience with such a system? It would need to be a 'remote' alert, one that activates the alert on e.g., my sister's phone (she's 4 hours away but the main coordinator of his caregiving) and/or alerts one of his local caregivers.  It cannot rely on my father 'activating it for help' b/c he isn't consistently cognitively capable of that.

:sigh:

[gooki]

Any smart home door or window sensor can do this. They are small and wireless so easy to install with the included double sided tape.

I use the Xiaomi brand. Cost is about $15 for the sensor, and $40 for the hub. But other brands will work just as well. Should be able to find something compatible with apple homekit if easier setup required. This assume you have wifi at the property. No additional ongoing costs.

You then set it to send an alert when the door is opened between a set time. And it'll appear as a notification on your phone.

FWIW I use mine to alert me if I've left my garage door open for an extended period of time.

[yachi]

Pair gooki's suggestion with one of those doorbell cameras, and you can take a look outside the door to see if he's there.  Actually I think if you just get a ring camera it can notify you of movement at the door, whether that's someone leaving or coming.

[Cranky]

Yes, our Ring camera/doorbell sends an alert.

My grandmother wandered, and at the very least I’d suggest some kind of ID bracelet in case he goes very far.

Also, if the police have to bring him home, it’s likely that social services will get involved, and you will then have fewer options.

[Boll weevil]

I’d also consider some sort of GPS tracker. I don’t know if they have the precision to tell you if he’s in or outside of the residence, but could certainly come in handy if he starts wandering any distance. The big issue would be to find a mechanism to make sure he takes it. The brute force option would be an anklet like they put on parolees, but it might be enough to attach it to something he likes to wear (certain pair of shoes, favorite hat or jacket, etc)

[Dreamer40]

My Ring camera/doorbell pings my phone whenever someone approaches the house or goes outside.

How often does he wander outside? The notification part isn’t hard, but knowing what to do with that information sounds harder. Are the caregivers willing to help him back inside at any time of night? I don’t get pinged at night when my phone is in sleep mode, but that could probably be changed.

Another thought is to look into solutions for sleepwalkers. I remember watching a comedy show where the comedian talked about needing to be zipped into his bed every night to prevent him from showing up down the street.

This sounds like a stressful situation. Sorry you’re having to deal with it.

[sonofsven]

I just went through this with a good friend and and her partner; it escalated quickly from him going outside and standing in the driveway unexpectedly one day, to,  two days later, him packing a map of North Dakota, a flashlight, and a pair of socks in a bag and being found a mile away by a stranger who called the police, who called an ambulance and had him taken to the emergency room at two am.
This is in a rural area, and not at all close to North Dakota (where he grew up)!
Our low tech solution was cheap alarms affixed to the outside of all exterior doors. We got them at the local hardware store; they were battery powered and we screwed them to door and jamb. When separated by the door opening they make a loud alarm. Horribly loud and annoying.
This alarm spooked him enough, at least at first, that he shut the door quickly and stayed in the house. It also alerted my friend that her partner had opened the door.
We locked two of the doors from the outside, essentially, and left one that functioned normally, but with the alarm. We did discuss the potential danger of only having one door to escape from a fire, but we believed we had little choice.
Thankfully, he did pass after a fairly quick descent into full dementia. The slowdown took years and he was still able to hold a conversation, albeit slowly, until an infection sped up the decline and our friend, as we knew him, was gone. This crisis lasted about six months.
Good luck, it's a painful and difficult journey.

[BlueHouse]

So sorry to hear you're going through this.  My mom has dementia and we're using cameras throughout the flat to supplement her home health care.  The cameras (we use nest) have notifications that you can set for different times.  So we can look in at any time, and also set it for notifications between certain hours.  So if she's up and moving in the middle of the night, not only can we see what she's doing, but we get notified in real time that it's happening. 

This is a terribly difficult time because you never feel as if you're doing enough, or doing the right things, etc.  I spent yesterday crying all day because I finally realized that what I was "resenting" about having to do so many extra tasks, look in, oversee, etc is really a terrible dread and fear that I will peek in through the cameras and find her dead.  So I'm in a constant state of stress of wondering if she'll be on the ground when I check in on the cameras every hour or two.   She seems to just "tip over" and then cannot get up off the floor.  And depending on how long she's been lying on the ground, that's the multiplication factor of my guilt.  I don't think Assisted Living will do much more for her, but it will offload my tasks, and I won't dread peeking in on her or visiting because I know she'll be alive when I call. 

We also use home health care for the incontinence.  Having her bathed every morning means someone's checking to make sure she is cleaned and dried and lotioned to avoid infection.  I recognize that paying people to do the dirty work means that I can spend time visiting and enjoying the good parts that are still there. 

[iluvzbeach]

So sorry you & your family are having to deal with such a difficult situation.

So much good advice above. In addition to what others have offered and along the same lines as the poster who mentioned a device for the ankle, you might look into the Apple AirTags and see if you can get a non-removable bracelet for one. I’m not sure if you can program them to alert you if your dad leaves a defined area but if so, this would be an easy and inexpensive option. Or even, some type of Garmin device where you can track its location. This would at least allow you to locate him or his body if he did wander away.

[wenchsenior]

Any smart home door or window sensor can do this. They are small and wireless so easy to install with the included double sided tape.

I use the Xiaomi brand. Cost is about $15 for the sensor, and $40 for the hub. But other brands will work just as well. Should be able to find something compatible with apple homekit if easier setup required. This assume you have wifi at the property. No additional ongoing costs.

You then set it to send an alert when the door is opened between a set time. And it'll appear as a notification on your phone.

FWIW I use mine to alert me if I've left my garage door open for an extended period of time.

No wifi at the property. It's a rural property so no easy way to get it, I don't think. Shit, does that take a lot of these  options off the table?

[Car Jack]

I'm wondering some things.  He sounds quite incapable of getting in a car, driving to a store and buying alcohol.  Where's he getting it?  Cutting that off would be my first task in that situation.

I don't think he needs alarms.  He needs 24 hours of attendants. 

"Putting him in a home" is far simpler sounding than reality.  There's the cost, accounting if there's subsidies or government money available and he has to "meet criteria" to get into assisted living or higher facilities.  There's also the legal part.  You can't just take charge as the responsible person taking care of the irresponsible person.  You'd need the court to agree and give you power.  A POA is not even close to enough as it's set up so you can act when he's unable to, but he can revoke this at any time or over-ride any decision you make.  So something like conservatorship which isn't easy.

With all these prelims out of the way, without government intervention, he really can do what he wants.  If that's standing in the street in the snow in his bare feet at 3 in the morning, ya, he can do that.  With nobody there to suggest he turn around at the door and go back to bed, he probably will do that. 

[wenchsenior]

I'm wondering some things.  He sounds quite incapable of getting in a car, driving to a store and buying alcohol.  Where's he getting it?  Cutting that off would be my first task in that situation.

I don't think he needs alarms.  He needs 24 hours of attendants. 

"Putting him in a home" is far simpler sounding than reality.  There's the cost, accounting if there's subsidies or government money available and he has to "meet criteria" to get into assisted living or higher facilities.  There's also the legal part.  You can't just take charge as the responsible person taking care of the irresponsible person.  You'd need the court to agree and give you power.  A POA is not even close to enough as it's set up so you can act when he's unable to, but he can revoke this at any time or over-ride any decision you make.  So something like conservatorship which isn't easy.

With all these prelims out of the way, without government intervention, he really can do what he wants.  If that's standing in the street in the snow in his bare feet at 3 in the morning, ya, he can do that.  With nobody there to suggest he turn around at the door and go back to bed, he probably will do that.

We are providing him booze via delivery. That's his wish, it's been his explicit wish for years.  As I stated in my original post, we aren't wondering what to do for him overall; an assisted care facility is a no-go unless 1) we can find no caregivers (it's a very small town, population about 10K); or 2) he asks to go to one (which he never will).

We've already been down the road of having a legally appointed conservatorship (his spouse) to make decisions on his behalf and have him legally institutionalized against his will for treatment (that was about 5 years ago); he was absolutely a danger to himself and others at that time, but as soon as he was sober for a few months he petitioned the court to get his rights back and got them. He's hated his spouse ever since and made her life miserable with blackout drunk dialing and verbal abuse ever since (they have been separated since then).

He's raged against nursing homes etc as an option even back when he was a relatively sober, very successful and high functioning adult in his 50s (he's approaching 80 now). He busted his ass to keep his own aging relatives in their homes with onsite care and fully expects us to do the same for him.

He has been through literally hundreds of thousands of dollars of private rehab at the best facilities in the country, as well as multiple rounds of court-ordered rehab at free facilities. He has been jailed for DWI multiple times and been in forced assisted living for 6 month stretches twice.

He's tried to stop drinking multiple times, and almost died countless times detoxing (both involuntarily and voluntarily).

He was sober for a stretch a couple of years ago and had suicidal ideation even when sober.  He's done and he wants to die.  To try to continue to support him in terms of overall health is weirdly, a form of abuse at this point. Certainly, putting him in an institution would be a form of abuse. We are trying to go with the least bad 'abuse/misery' to abide by his long stated wishes.  We all wish (not in a hostile way) that he would just die already. Not b/c we don't love him (he was actually a fantastic father to me until he had a meltdown when I was about 17), but b/c HE clearly wants to die.

Unfortunately, assisted suicide isn't an option (and he wavers day to day on whether he wants that anyway). Alcohol is all he has at this point and he wants to kill himself with it. We're ok with that, he's ok with it, the caregivers are ok with it (most caregiving agencies will work with active addicts and not interfere with their use).

The problem is when he's less drunk he's much more mobile, but he has damaged cognitive capacity regardless, so he's actually more of a risk to wander when he's more sober (er).

So our problem isn't the booze, ironically. It's when he's not getting enough booze and starts to get more mobile, anxious, and hostile that the trouble starts. He's been drinking wine instead of hard liquor the past few weeks and that's probably why the wandering has popped up.

Hence the specific nature of the question about how to monitor him when he wanders.

***

Great responses in this thread.  A lot to digest.  I knew I could count on you guys here, thank you!

[Boll weevil]

Any smart home door or window sensor can do this. They are small and wireless so easy to install with the included double sided tape.

I use the Xiaomi brand. Cost is about $15 for the sensor, and $40 for the hub. But other brands will work just as well. Should be able to find something compatible with apple homekit if easier setup required. This assume you have wifi at the property. No additional ongoing costs.

You then set it to send an alert when the door is opened between a set time. And it'll appear as a notification on your phone.

FWIW I use mine to alert me if I've left my garage door open for an extended period of time.

No wifi at the property. It's a rural property so no easy way to get it, I don't think. Shit, does that take a lot of these  options off the table?

How rural? Is it a cluster of houses around a lake several miles out of town, or is it farm country where the nearest neighbor is miles away. In the case of the former, there may be cable internet available. But if the nearest neighbor is miles away, internet would probably have to be via satellite (I think Dish Network has satellite internet. HughesNet is another name that comes to mind).

Apple Air Tag and Tile work through Bluetooth, so they’d only work if there were enough similarly equipped devices in the area. I think some GPS trackers report via cell phone antennas though, so if there’s cell service at the residence, you can probably find something that’ll work.

[wenchsenior]

Any smart home door or window sensor can do this. They are small and wireless so easy to install with the included double sided tape.

I use the Xiaomi brand. Cost is about $15 for the sensor, and $40 for the hub. But other brands will work just as well. Should be able to find something compatible with apple homekit if easier setup required. This assume you have wifi at the property. No additional ongoing costs.

You then set it to send an alert when the door is opened between a set time. And it'll appear as a notification on your phone.

FWIW I use mine to alert me if I've left my garage door open for an extended period of time.

No wifi at the property. It's a rural property so no easy way to get it, I don't think. Shit, does that take a lot of these  options off the table?

How rural? Is it a cluster of houses around a lake several miles out of town, or is it farm country where the nearest neighbor is miles away. In the case of the former, there may be cable internet available. But if the nearest neighbor is miles away, internet would probably have to be via satellite (I think Dish Network has satellite internet. HughesNet is another name that comes to mind).

Apple Air Tag and Tile work through Bluetooth, so they’d only work if there were enough similarly equipped devices in the area. I think some GPS trackers report via cell phone antennas though, so if there’s cell service at the residence, you can probably find something that’ll work.

It's sort of in between (it's a lake property, with a couple of neighbors within a mile, but about 10 miles outside the little town). However, I just contacted my sister and she said that he has cable and we can get a wi-fi hookup piggy backed onto it. Phew.

[Catbert]

Not and answer to your question but...look at some of the custom medial alert bracelets.  You can really put any info you want including his name, emergency contact info, etc.  At least if found wandering they'll know who to call.  Usefulness depends on whether he'd wear it.  For example:

https://www.amazon.com/Silicone-Sport-Medical-Alert-Bracelet/dp/B00BZA22B4/ref=sr_1_9?keywords=medical+bracelet&qid=1649270998&sr=8-9

Beyond that, I understand the difficulty of having an active alcoholic elderly parent.  Mine died 15 years ago with "presumed recurrent lung cancer".  As his medical POA I decided not to treat his terminal lung cancer and he died quickly of pneumonia.   It sounds horrible but honestly one of the easier decisions of my adult life because I knew that's what he would have wanted.  Seemingly like your father, mine was never sober for long during my lifetime other than when in jail for DUI. 

I wish you luck both with your father's wandering and the difficult decisions ahead.   
 

[Sibley]

In the theme of he's an adult and he can choose to drink himself to death....

You state the alcohol is delivered, and he's been drinking more wine and less hard liquor lately. I assume he's choosing the specifics of what's delivered? If not, have more hard liquor delivered so he's more likely to drink himself into a state where he's not wandering.

For the record, I get it. And I respect the fact that you acknowledge and accept the choice you've made. If you didn't acknowledge and accept, I'd have objections.

I also really hope that you've got therapy or something to help you through this. Even though you're doing the right thing that doesn't make it easy.

[iluvzbeach]

@wenchsenior, what a difficult situation to be in. I dealt with similar difficulties with my own father, who was successful in taking his own life last year. I’m sorry you & your family are going through this. I wish you peace now, and once he’s gone.

[Dicey]

Wow, wenchsenior, that's a lot. I completely understand that continuing the alcohol is virtually a necessity. I'm commenting to say  you're handling his decision to be a drinker remarkably well. Addiction sucks.

[jim555]

My mother had full dementia.  What eventually happens is the person will end up in the hospital for something, and the hospital will not release the patient unless they have 24/7 care.  The hospitals have connections with nursing homes to pull the right strings.  In my situation she couldn't do any basic functions like bathing, eating and would try to walk outside, which is dangerous for her.  She was better off in a home.

[BlueHouse]

No wifi at the property. It's a rural property so no easy way to get it, I don't think. Shit, does that take a lot of these  options off the table?

If there's a way to get it, easy or difficult, I would look into that.  There are SO MANY tools now that make life easier when wi-fi is available.  Cameras, sensors, we also have a videophone for when we want to talk to mom but she can't figure out how to take a phone call.  Fitbits and other health type gadgets helped us to know when she was lost or had fallen or had not moved all day long back when she was still willing to wear them.  Now we depend on passive technology that we control. 

Does your dad get cell service?  you can set up a hot spot from cell service.  I don't know how, but if all these "van-life" people can work remotely from the middle of nowhere with a pringles can and an antenna, you must be able to get some service out there.    This would be my number one priority -- find someone to help you get a good solution. 

@wenchsenior , does he insist on staying in his current home?   Could you convince him to go to a smaller, more manageable place without stairs?  If he knew it meant he could afford to stay out of a nursing home longer, would he consider it?  Would he be willing to drive through a campus of a CCRC?   I know not everyone likes these, but I am absolutely sold.  I will definitely want to move into one myself when the time comes, and I never felt like that before actually seeing what they are like. 

Also, just to let others know who haven't gone through this yet: 
Assisted Living (where my mom is) provides some skilled nursing, which she really doesn't need yet.  It provides very little cleaning/laundry/sanitizing, which she needs a TON of now as she's incontinent and can't get the pull-ups off without spilling somewhere.  So the in-home healthcare is cheaper, friendlier, and a better solution for many people for as long as possible. 

[thedigitalone]

Just commenting on internet options for rural locations to establish a Wi-Fi access point.

• If there is *any* cell coverage you can get an LTE or 5g device that will host a Wi-Fi hotspot.
• There are old-school bi-directional satellite services available via Hughs, it's slow for things like gaming but perfectly fine for security camera viewing needs a clear line of site to the east.
• Starlink is Elon Musk's satellite service, it is much faster and cheaper but only limited access for now, but only $100 to sign up for a spot.
• If there is a copper pair, POTS, aka phone line available at the house DSL is often possible, T1 as well if they have capacity available on their side.  Both are slow, but reliable.
• Last but not least, dial-up is still a thing, not going to get much speed but you can get alerts out and maybe delayed videos to a cloud provider.
• More complicated to setup and depending on the layout of the house and property you can do a point-to-point relay up to 15km if you have line of site to someone who has a reliable connection to share.

[JGS1980]

Hi Wenchsenior, I'm sorry you have to manage this, but I believe you are doing it in a rather insightful and ethical manner.

Is he in home hospice? If he is in fulminant liver failure, and two doctors agree he has 6 months or less to live, then that may qualify him for home hospice, which is a benefit under medicare. This will open up a plethora of home care options such as an on-call hospice MD, CNA's, Home Nursing, PT/OT, Respite Care, etc... Worth looking into if this has not been set up yet.

JGS

https://www.medicare.gov/Pubs/pdf/02154-medicare-hospice-benefits.pdf

[wenchsenior]

My mother had full dementia.  What eventually happens is the person will end up in the hospital for something, and the hospital will not release the patient unless they have 24/7 care.  The hospitals have connections with nursing homes to pull the right strings.  In my situation she couldn't do any basic functions like bathing, eating and would try to walk outside, which is dangerous for her.  She was better off in a home.

Yeah, we know that's a possibility. He's been forcibly confined to care facilities after hospital stays before (one long stint was about 5 years ago...doctors were convinced he was dying, but as soon as he forcibly sobered up, he bounced back in few months and got discharged).  If that happens, it might be out of our hands, but he still rails against that particular episode (which was also out of our hands), so we are doing everything possible to keep him at home. As I noted, he'd be physically better off in a facility for sure, but mentally it would be disaster, esp as he sobered up.  In addition to the cognitive decline, he has two diagnosed personality disorders and even at the best of times and stone sober he is prone to fits of rage and complete irrationality. We want to try to limit things that set him off...why make his last year or two full of emotional upset if we can prevent it?

He really is a mess of a human. It makes me very sad, and also impressed that he functioned as well as he did for as long as he did. But damn he is difficult to deal with right now.

Thank you again for all your comments and support.  This group is so knowledgeable.

[Cassie]

You are definitely doing the right thing. As a former social worker adult children often have a real problem understanding that their parents can choose to live unsafe.  It’s a difficult situation and I really feel for all of you.

[rosarugosa]

I'm wondering some things.  He sounds quite incapable of getting in a car, driving to a store and buying alcohol.  Where's he getting it?  Cutting that off would be my first task in that situation.

I don't think he needs alarms.  He needs 24 hours of attendants. 

"Putting him in a home" is far simpler sounding than reality.  There's the cost, accounting if there's subsidies or government money available and he has to "meet criteria" to get into assisted living or higher facilities.  There's also the legal part.  You can't just take charge as the responsible person taking care of the irresponsible person.  You'd need the court to agree and give you power.  A POA is not even close to enough as it's set up so you can act when he's unable to, but he can revoke this at any time or over-ride any decision you make.  So something like conservatorship which isn't easy.

With all these prelims out of the way, without government intervention, he really can do what he wants.  If that's standing in the street in the snow in his bare feet at 3 in the morning, ya, he can do that.  With nobody there to suggest he turn around at the door and go back to bed, he probably will do that.

We are providing him booze via delivery. That's his wish, it's been his explicit wish for years.  As I stated in my original post, we aren't wondering what to do for him overall; an assisted care facility is a no-go unless 1) we can find no caregivers (it's a very small town, population about 10K); or 2) he asks to go to one (which he never will).

We've already been down the road of having a legally appointed conservatorship (his spouse) to make decisions on his behalf and have him legally institutionalized against his will for treatment (that was about 5 years ago); he was absolutely a danger to himself and others at that time, but as soon as he was sober for a few months he petitioned the court to get his rights back and got them. He's hated his spouse ever since and made her life miserable with blackout drunk dialing and verbal abuse ever since (they have been separated since then).

He's raged against nursing homes etc as an option even back when he was a relatively sober, very successful and high functioning adult in his 50s (he's approaching 80 now). He busted his ass to keep his own aging relatives in their homes with onsite care and fully expects us to do the same for him.

He has been through literally hundreds of thousands of dollars of private rehab at the best facilities in the country, as well as multiple rounds of court-ordered rehab at free facilities. He has been jailed for DWI multiple times and been in forced assisted living for 6 month stretches twice.

He's tried to stop drinking multiple times, and almost died countless times detoxing (both involuntarily and voluntarily).

He was sober for a stretch a couple of years ago and had suicidal ideation even when sober.  He's done and he wants to die.  To try to continue to support him in terms of overall health is weirdly, a form of abuse at this point. Certainly, putting him in an institution would be a form of abuse. We are trying to go with the least bad 'abuse/misery' to abide by his long stated wishes.  We all wish (not in a hostile way) that he would just die already. Not b/c we don't love him (he was actually a fantastic father to me until he had a meltdown when I was about 17), but b/c HE clearly wants to die.

Unfortunately, assisted suicide isn't an option (and he wavers day to day on whether he wants that anyway). Alcohol is all he has at this point and he wants to kill himself with it. We're ok with that, he's ok with it, the caregivers are ok with it (most caregiving agencies will work with active addicts and not interfere with their use).

The problem is when he's less drunk he's much more mobile, but he has damaged cognitive capacity regardless, so he's actually more of a risk to wander when he's more sober (er).

So our problem isn't the booze, ironically. It's when he's not getting enough booze and starts to get more mobile, anxious, and hostile that the trouble starts. He's been drinking wine instead of hard liquor the past few weeks and that's probably why the wandering has popped up.

Hence the specific nature of the question about how to monitor him when he wanders.

***

Great responses in this thread.  A lot to digest.  I knew I could count on you guys here, thank you!

I'm afraid I have no advice to offer, but I wanted to say that I really respect your efforts to honor his wishes while trying to handle this difficult situation in a responsible and compassionate manner.  My mother has Alzheimer's and we are helping her to manage at home, but she is very cooperative and grateful for all we do for her.  Even so, it is a difficult thing under the best of circumstances. Mom says all the time that she wishes she could take a pill and disappear, or that god would just take her.  My sister and I would love to see her pass peacefully in her sleep, but so many people seem to think its terrible to even think such a thing. 

[GreenSheep]

My sister and I would love to see her pass peacefully in her sleep, but so many people seem to think its terrible to even think such a thing.

Our society gets death all wrong most of the time. People want "everything done" for 98 year old Grandma/Grandpa with dementia and advanced cancer, when "everything" is really just torture. We don't even treat our pets this terribly. People are too hung up on how someone's death affects THEM, and not the dying person. It's not uncommon for the family to want to keep Grandma alive because they like getting her social security checks. Or they feel guilty for the bad relationship they've had with her. So often, it's not about what's best for the dying person, which is so sad.

[BikeFanatic]

Just posting to say wow, unbelievable situation, what a strain on you. Hopefully he just goes in his sleep one night. You certainly have done all you can.

[wenchsenior]

No wifi at the property. It's a rural property so no easy way to get it, I don't think. Shit, does that take a lot of these  options off the table?

If there's a way to get it, easy or difficult, I would look into that.  There are SO MANY tools now that make life easier when wi-fi is available.  Cameras, sensors, we also have a videophone for when we want to talk to mom but she can't figure out how to take a phone call.  Fitbits and other health type gadgets helped us to know when she was lost or had fallen or had not moved all day long back when she was still willing to wear them.  Now we depend on passive technology that we control. 

Does your dad get cell service?  you can set up a hot spot from cell service.  I don't know how, but if all these "van-life" people can work remotely from the middle of nowhere with a pringles can and an antenna, you must be able to get some service out there.    This would be my number one priority -- find someone to help you get a good solution. 

@wenchsenior , does he insist on staying in his current home?   Could you convince him to go to a smaller, more manageable place without stairs?  If he knew it meant he could afford to stay out of a nursing home longer, would he consider it?  Would he be willing to drive through a campus of a CCRC?   I know not everyone likes these, but I am absolutely sold.  I will definitely want to move into one myself when the time comes, and I never felt like that before actually seeing what they are like. 

Also, just to let others know who haven't gone through this yet: 
Assisted Living (where my mom is) provides some skilled nursing, which she really doesn't need yet.  It provides very little cleaning/laundry/sanitizing, which she needs a TON of now as she's incontinent and can't get the pull-ups off without spilling somewhere.  So the in-home healthcare is cheaper, friendlier, and a better solution for many people for as long as possible.

''

Yes, he can get cell service there. Thanks to those who have suggested those options! 

He absolutely will not leave his home unless forced. He also won't leave this little town. He was born and raised there, and he literally helped design and build the house he lives in now. He spent decades accumulating the property around it in a series of buys (which he constantly talks about as his 'legacy' to leave to us....ironic b/c if he doesn't die within 2 years, we're going to have to start selling it off for cash).  I love the concept of CCRC facilities, myself, and his grandparents lived in one toward the end of his life, but he would never even consider that and it would be far too emotionally disruptive for him to adapt to a new environment.

[wenchsenior]

Hi Wenchsenior, I'm sorry you have to manage this, but I believe you are doing it in a rather insightful and ethical manner.

Is he in home hospice? If he is in fulminant liver failure, and two doctors agree he has 6 months or less to live, then that may qualify him for home hospice, which is a benefit under medicare. This will open up a plethora of home care options such as an on-call hospice MD, CNA's, Home Nursing, PT/OT, Respite Care, etc... Worth looking into if this has not been set up yet.

JGS

https://www.medicare.gov/Pubs/pdf/02154-medicare-hospice-benefits.pdf

This is a really good point. He hasn't been to the doctor in about 6 months, and wasn't in diagnosed liver failure then. He's had cirrhosis for years, and we are just assuming it's failing at this point b/c of the plethora of new indicative symptoms (dark urine, nausea and diarrhea, severe swelling, cognitive impairment, etc).  And he won't go to the doctor voluntarily. BUT, at some point if he ends up in medical crisis and the caregivers have to call for help, this is a real possibility, and it would be helpful at that point.

[Queen Frugal]

There are ankle monitors for people under house arrest.  Would he be willing to wear an ankle monitor?  Would one of the companies that provides this service be willing to provide it without a court order?  And could it be that if he leaves the premises you are notified? 

[Boll weevil]

Hi Wenchsenior, I'm sorry you have to manage this, but I believe you are doing it in a rather insightful and ethical manner.

Is he in home hospice? If he is in fulminant liver failure, and two doctors agree he has 6 months or less to live, then that may qualify him for home hospice, which is a benefit under medicare. This will open up a plethora of home care options such as an on-call hospice MD, CNA's, Home Nursing, PT/OT, Respite Care, etc... Worth looking into if this has not been set up yet.

JGS

https://www.medicare.gov/Pubs/pdf/02154-medicare-hospice-benefits.pdf

This is a really good point. He hasn't been to the doctor in about 6 months, and wasn't in diagnosed liver failure then. He's had cirrhosis for years, and we are just assuming it's failing at this point b/c of the plethora of new indicative symptoms (dark urine, nausea and diarrhea, severe swelling, cognitive impairment, etc).  And he won't go to the doctor voluntarily. BUT, at some point if he ends up in medical crisis and the caregivers have to call for help, this is a real possibility, and it would be helpful at that point.

In this situation, a “do not resuscitate” order seems appropriate if there’s not one in place already. I don’t know what all is involved in getting one.

One other thing that concerns me is that you may be in a legal gray area with regards to the care. You may think you’re doing the right thing, and based on the facts presented, we think you’re taking the best path, but I can see how this could be spun pretty easily to make you the bad guy. Take lots of notes, and you may want to keep the names and contact info of any doctors, nurses, social workers, etc. who could testify to statements he has made and actions he’s taken that support your decisions. It may also make sense to contact a lawyer or do some other research to check if any of the suggestions made on this thread are illegal at the state or federal levels.

[Villanelle]

Hi Wenchsenior, I'm sorry you have to manage this, but I believe you are doing it in a rather insightful and ethical manner.

Is he in home hospice? If he is in fulminant liver failure, and two doctors agree he has 6 months or less to live, then that may qualify him for home hospice, which is a benefit under medicare. This will open up a plethora of home care options such as an on-call hospice MD, CNA's, Home Nursing, PT/OT, Respite Care, etc... Worth looking into if this has not been set up yet.

JGS

https://www.medicare.gov/Pubs/pdf/02154-medicare-hospice-benefits.pdf

This is a really good point. He hasn't been to the doctor in about 6 months, and wasn't in diagnosed liver failure then. He's had cirrhosis for years, and we are just assuming it's failing at this point b/c of the plethora of new indicative symptoms (dark urine, nausea and diarrhea, severe swelling, cognitive impairment, etc).  And he won't go to the doctor voluntarily. BUT, at some point if he ends up in medical crisis and the caregivers have to call for help, this is a real possibility, and it would be helpful at that point.

It might be worth seeing if you cn find a doctor who can make a housecall, even if there is expense associated with that.  Hospice was a tremendous help with I cared for my grandmother for the final months of her life.  Now, I was doing it all on my own, so the help (and frankly, just the break, even if it was only for 20 minutes here and there) I got from them was incredibly helpful.  And maybe there were more resources I just wasn't aware of that I could have used. Maybe since your dad has caregivers during the day, there wouldn't be as much value-add from hospice, but it seems worth digging in to. 

Also, hang in there.  Clearly, you are a good person trying to do right by your dad, even though he is a troubled and complicated man.  I have so much respect for that.  This end-of-life stuff is so, so challenging, on so many levels, even in the best of situations, and it sounds like this is far from the best of situations.

And if you can get him to sign a DNR (and medical PoA), that would likely also be best. 

[BNgarden]

YMMV, but another benefit of hospice care (in a facility and maybe in the home) in Alberta Canada was the access to really good drugs for pain control, that are normally not  as readily available.

[BlueHouse]

As a former social worker adult children often have a real problem understanding that their parents can choose to live unsafe.  It’s a difficult situation and I really feel for all of you.

Changing our own opinions about what standard of living/cleanliness/social interaction/activity has been the hardest part for my siblings and me. 

[Villanelle]

As a former social worker adult children often have a real problem understanding that their parents can choose to live unsafe.  It’s a difficult situation and I really feel for all of you.

Changing our own opinions about what standard of living/cleanliness/social interaction/activity has been the hardest part for my siblings and me.

I feel this so much, and my situation was far less emotionally fraught than yours.  I couldn't get grandma to the shower by myself.  She was adamant about staying in her home, but the only way to really give her a bath was when her *weekly* hospice care person came.  One time, they sent a male nurse and grandma refused her bath.  And she wouldn't even allow me to do a through job with wipes or a sponge bath.  I hated that, but I had to accept it as her choice. 

This stuff is so, so hard.  Be kind to yourself as you walk this path.

[BlueHouse]

As a former social worker adult children often have a real problem understanding that their parents can choose to live unsafe.  It’s a difficult situation and I really feel for all of you.

Changing our own opinions about what standard of living/cleanliness/social interaction/activity has been the hardest part for my siblings and me.

I feel this so much, and my situation was far less emotionally fraught than yours.  I couldn't get grandma to the shower by myself.  She was adamant about staying in her home, but the only way to really give her a bath was when her *weekly* hospice care person came.  One time, they sent a male nurse and grandma refused her bath.  And she wouldn't even allow me to do a through job with wipes or a sponge bath.  I hated that, but I had to accept it as her choice. 

This stuff is so, so hard.  Be kind to yourself as you walk this path.

Thank you Villanelle, it really really matters to hear from other people.  We're not there yet, but things are going downhill fast.

[BlueHouse]

Wanted to pass this on to the OP.  There seems to be a desire to leave when people see a door, so disguising the door is popular in some places. 

https://www.alzstore.com/door-murals-peel-and-stick-p/0364.htm?utm_source=google&utm_campaign=Campaign%20-%20PLA%20Shopping&utm_medium=pla

[Weisass]

My mother had full dementia.  What eventually happens is the person will end up in the hospital for something, and the hospital will not release the patient unless they have 24/7 care.  The hospitals have connections with nursing homes to pull the right strings.  In my situation she couldn't do any basic functions like bathing, eating and would try to walk outside, which is dangerous for her.  She was better off in a home.

Yeah, we know that's a possibility. He's been forcibly confined to care facilities after hospital stays before (one long stint was about 5 years ago...doctors were convinced he was dying, but as soon as he forcibly sobered up, he bounced back in few months and got discharged).  If that happens, it might be out of our hands, but he still rails against that particular episode (which was also out of our hands), so we are doing everything possible to keep him at home. As I noted, he'd be physically better off in a facility for sure, but mentally it would be disaster, esp as he sobered up.  In addition to the cognitive decline, he has two diagnosed personality disorders and even at the best of times and stone sober he is prone to fits of rage and complete irrationality. We want to try to limit things that set him off...why make his last year or two full of emotional upset if we can prevent it?

He really is a mess of a human. It makes me very sad, and also impressed that he functioned as well as he did for as long as he did. But damn he is difficult to deal with right now.

Thank you again for all your comments and support.  This group is so knowledgeable.

I have no advice, just solidarity. My partner's family was in a similar situation with their grandmother, and ultimately providing her with a handle of vodka a week was the least worst option for everyone involved. Everyone's situation is different, but sometimes you have to work with what you have, and make peace with decisions you wouldn't make for yourself.

[wenchsenior]

Since this thread has revived, I just want to thank everyone again for their helpful and considered comments.

The situation with my dad's worrisome wandering has resolved in one way (he was hospitalized for acute Wernicke encephalopathy, nearly died again, but didn't) and was discharged a couple weeks later with even more severe Korsakoff's (it's now to the point where he sometimes doesn't recognize us kids, or confuses us with his siblings, whom he hasn't seen in years). He's entirely confined to a wheelchair/railed bed and needs 24 hour care at home.  So the issue of  him wandering is off the table for the foreseeable future b/c he doesn't have the motor capacity and someone is with him all the time.

The good news is, for the first time in a couple (?time blurs in the pandemic era?) years, he's no longer cogent enough to ask for booze, so he's sober, and as a secondary effect is eating food again. The downside is that this is causing somewhat of a rebound in his physical health, while his mental state is well into dementia.

What's more incredible is that doctors report that he is NOT, as was previously diagnosed several years ago and as all of his physical symptoms (extreme nausea, extreme yellowing of the eyes, extreme swelling of the abdomen and feet/legs, etc) indicated, in liver failure after all.

I repeat, he has drunk so much that he has literally fried his brain to mush, but his liver is apparently nowhere close to failing, despite being projected to fail within a few years, during a previous alcohol-induced hospital stay several years ago.

Absolutely incredible constitution.

It's nice that he's now got people around 24 hours per day (company) and can enjoy the simple pleasures of eating and being wheeled out onto his deck, and occasionally taken for drives. 

Of course, this brings up the very real possibility of him outliving his money and being put in a home (always his worst nightmare). He's got enough cash for about 1.5 years of care at this rate, and my husband and I are already considering trying to purchase a lot or two of his property to try to free up more cash in the short term (although at his current burn rate, it would only give him enough for about 4 more months of care).

I don't know if this is a positive or not. I'm glad he's in a better state overall and (apart from reports of occasional sundowning) and calmer and less miserable, but this rebound in physical health might not be a great thing in the longer run. Aging is tough, man.

[Sibley]

Good luck. You really don't know the future, so I hope he passes peacefully before he's forced to move.

[wenchsenior]

Wanted to pass this on to the OP.  There seems to be a desire to leave when people see a door, so disguising the door is popular in some places. 

https://www.alzstore.com/door-murals-peel-and-stick-p/0364.htm?utm_source=google&utm_campaign=Campaign%20-%20PLA%20Shopping&utm_medium=pla

Huh, that's clever!

[Catbert]

Calmer and less miserable seems a major improvement for him.  What you call "frying his brain to mush with alcohol" my mother called "wet brain".   

My active alcoholic and smoker father made it to almost 80 pretty much the only one in my parents generation to do so. That gives me hope that I could live a long life. 

[wenchsenior]

Calmer and less miserable seems a major improvement for him.  What you call "frying his brain to mush with alcohol" my mother called "wet brain".   

My active alcoholic and smoker father made it to almost 80 pretty much the only one in my parents generation to do so. That gives me hope that I could live a long life.

Yes, "wet brain" is the non-technical term.

[Dee_the_third]

Aw OP, I have some much admiration for you and your family. This sounds like a super shitty situation all around. Aging IS tough, uniquely tough.

Re: the financial side of it, Medicare Part B can pay for partial coverage of home health services. Call up the hospital social worker, or someone who works in hospice. It's an administrative maze, and you want someone who knows how to navigate it.

[wenchsenior]

Aw OP, I have some much admiration for you and your family. This sounds like a super shitty situation all around. Aging IS tough, uniquely tough.

Re: the financial side of it, Medicare Part B can pay for partial coverage of home health services. Call up the hospital social worker, or someone who works in hospice. It's an administrative maze, and you want someone who knows how to navigate it.

Yes, my sister works in the industry and knows the ins and outs. His doctor has signed paperwork that he qualifies for hospice care, but the social worker that came out to investigate the case said he doesn't yet qualify according to their guidelines (which are extremely strict). But his doctor is willing to renew the paperwork on an ongoing basis, so at some point he will likely qualify for some coverage.

[Dee_the_third]

Aw OP, I have some much admiration for you and your family. This sounds like a super shitty situation all around. Aging IS tough, uniquely tough.

Re: the financial side of it, Medicare Part B can pay for partial coverage of home health services. Call up the hospital social worker, or someone who works in hospice. It's an administrative maze, and you want someone who knows how to navigate it.

Yes, my sister works in the industry and knows the ins and outs. His doctor has signed paperwork that he qualifies for hospice care, but the social worker that came out to investigate the case said he doesn't yet qualify according to their guidelines (which are extremely strict). But his doctor is willing to renew the paperwork on an ongoing basis, so at some point he will likely qualify for some coverage.

OK, good! You guys are doing great, the best anyone could be expected to under these circumstances. Hoping you get some relief before the estate is bankrupted.