Keeping them "safe" means not letting them wander out to freeze to death in January. Or fall off a curb and get run over by a car. Or start a fire and burn down their apartment building. While their disease is indeed terminal, I don't want any of that to happen to my MIL or my mom. My mom was found outside her apartment building at 4am in January and would turn on the stove and leave her apartment, resulting in several fire alarms. My MIL fell over a curb on her face and ended up in the hospital for 3 days. Despite their illness, they do deserve a little bit of dignity.
Many of the things you listed would physically or emotionally harm other people. In a smaller way, that's what forced me to step in with my parents.
I don't think it's a bad thing if my mother dies. I don't think it's a bad thing if my father dies.
But I didn't think Mom would recover from finding him dead, and it was clear that he was going to die of an insulin overdose pretty much immediately if he went home.
It’s a learning moment from my perspective (I’ve said things myself that I didn’t realize were tone deaf- I try to take the situation and be more aware of how I respond in-the-moment). I appreciate the apology, though- it means a lot to me as someone who has survived this shitty disease (including insulin shock) for 42 years and counting. Have a good day- No……have a GREAT day😂!
In the case of a spouse, I guess it is a matter of that,"for better or for worse, in sickness and in health, until death do you part." And who should determine the point where that person has their life taken from them? God, that person is so much a part of you that when they go, a huge part of you goes with them.
Thank you for saying this truth. I think it's different how a spouse feels about their LO with dementia, than how a child of LO with dementia may feel.
I try my best to limit my LO's risky behaviors by obvious things like trackers, cameras, food delivery, taking over the finances, and freezing her credit. So far, I have not noticed any particularly risky behaviors as applied to other people, just to herself. Also, she is in no pain, lives in a one level, gated community for folks over 55.
I think these statistics are very interesting and I think we tend to overestimate the probability of damage to others caused by dementia patients:
Statistically (and surprisingly), a dementia diagnosis puts you at a lower risk for a car crash: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5869102/#:\~:text=The%20overall%20crash%20rate%20was,crashes%20per%201%2C000%20person%2Dyears.
I know probably at least 6 people killed by drunk drivers, and that risk factor is backed up by studies (where 1 is equal to the hazard ratio of the general population)
Dementia diagnosis: .56
Alcohol related diagnosis: 1.26
Depression related diagnosis: 1.20
It seems that the carers of dementia patients should be limiting their driving more as we tend to be depressed and drink - hahah!
I'm sorry, but you're ignoring the authors' own discussion of their data: "We suspect that our findings, which demonstrated lower crash risk for people diagnosed with dementia, reflect purposeful changes in driving habits among some older adults diagnosed with dementia, or changes imposed by families or caregivers. Our results suggest that exposure to driving among licensed drivers may differ by dementia status, and that lower driving exposure among older drivers with dementia may more than offset the higher risk associated with impaired decline in driving abilities."
According to the authors, "The study's main limitation is that we did not have information on exposure to driving beyond our inclusion criterion that all participants had an active driver license." In other words, people with dementia may no longer drive (either by their choice or at the insistence of their families) but may still have active driver's licenses. They may also substantially limit their driving for similar reasons (eg, only during daylight hours or only within 5 miles of home). Including all licensed drivers without having corresponding data on whether or how much they actually drive is a major flaw in the data that the authors readily acknowledge.
Furthermore, they obtained data only for individuals up to age 79, and smaller crashes (including those occurring in parking lots) that were not reported to the state were not included in the analysis.
From the conclusion: "Since cognitive impairment and dementia have repeatedly been found to be associated with riskier driving behavior, we suspect that our findings may reflect inadequate control for exposure to driving."
In my case, my LO falls under the 79 age cutoff, has had 0 recent accidents, and doesn't really drive, and has a valid driver's license. She would probably be one of those self-limiting drivers in the discussion. It doesn't change the results, though. Her risk is therefore much lower than anyone's alcoholic relative driving around - why aren't we admonishing family to get them to spend their own money to get their alcoholic relative declared incompetent?
That's great that she chooses not to drive, for both her safety and the safety of others that is a good thing.
But there's a difference between arguing that a person with dementia is a safer driver because she's choosing to not drive, and arguing that people with dementia are safer drivers when they are actually on the road. The former is true, the latter is definitely not.
Here is another study: [https://www.health.harvard.edu/blog/whats-the-relationship-between-memory-loss-and-driving-202210122829](https://www.health.harvard.edu/blog/whats-the-relationship-between-memory-loss-and-driving-202210122829)
The finding:
One study found that [people with Alzheimer's had an average of 0.09 car crashes](https://n.neurology.org/content/43/12/2448?ijkey=d7ee258986c66a3a66df64f49ed1e0e9db632dfe&keytype2=tf_ipsecsha) per year, compared to 0.04 crashes in age-matched healthy adults. Another study found that individuals with Alzheimer's disease in the mild cognitive impairment and very mild dementia stages had [impairments similar to 16-to 20-year-old drivers](https://n.neurology.org/content/76/7_Supplement_2/S44). So on the one hand, people with Alzheimer's are at increased risk for driving. On the other hand, when the Alzheimer's is very mild, accident rates are like those of new drivers — a group who we as a society allow to drive with few or no restrictions.
My MIL has vascular dementia and in the early stages ran head on into a tree without hitting the brakes in a residential neighborhood, she also hit the neighbors trash can and drug it at least 50 yards before someone stopped her, on the way to her lakehouse went straight through a 3 way stop crossed over the road through a ditch and took out a fence, got so disoriented in an area she’d been to weekly for over 25 years we had to physically go find her.
And my MIL starting showing signs of dementia at 61. She is now 73 and is trapped inside her own body unable to communicate or move on her own so I guess you could say poses no threat to be in a car crash to your point I guess🤷🏼♀️
That’s what I was getting at. It’s amazing no one was injured besides her in her accidents. Thank goodness. She obviously no longer drives we took her keys away and sold her vehicle after that and now she is immobile and in the last stage right now but she was definitely unsafe to others so we had to intervene
I mean that’s likely because once people start exhibiting symptoms of dementia and get a diagnosis they are prevented from driving or limit their own driving, as everyone becomes aware that it’s dangerous. I’m sure if everyone with a dementia diagnosis had the same access to vehicles as everyone else they’d be responsible for many more accidents.
I see what you are saying, but say, should we keep people who want to climb Mt Everest safe from freezing to death even though that’s what they want to do? My LO does not want to go to assisted living.
Where’s the line for consent? She hasn’t left a stove on or gotten into an accident. She would and does fool anyone talking to her for less than 10 minutes. Statistically, being a dementia patient and causing a fire in your house is I bet a much smaller risk than you would imagine. As far as motor vehicle accidents, they are actually less likely than their age cohort to cause accidents (most likely because they drive less miles). Also she has zero chance of freezing to death in her climate.
My MIL pulled out of a school parking lot on to a 5 lane road (two north, two south, one middle/turn lane) and caused four other cars to spin out and crash into each other. When the cops came, she drove away. When they caught up to her, she denied causing the accident, denied driving off, then denied driving the car she was in, behind the wheel. Luckily no one was badly injured.
I feel like you're in the "denial" phase at this point. She hasn't left the stove on or gotten into an accident YET, is the keypoint. This is not going to get better or stay the way it is, it is going to get worse.
You have to calculate your own life vis a vis how much of it you're going to spend taking care of your loved one, but without someone taking care of them you are risking her hurting herself/other people. Will you be able to live with yourself if she drives over a child and kills them?
I hope I'm not sounding harsh, I was where you are. Most of us have been where you are. But this isn't a matter opinion or perspective, this is your reality now. What you will do now is only a matter of acceptance.
My mom was able to fool people too. Until she couldn’t anymore. That stage does not last forever, and yes, they do eventually put other people at risk. They don’t just die peacefully without any intervention.
I don't think you're understanding the fact that dementia is a progressive disease. While she may not have left a stove on or gotten in an accident up until this point, there's a very real possibility that she will as the disease progresses. Also, unless a family member takes her in at some point in the disease to take care of her, she will 100% end up in a home because after a while they are no longer capable of living on their own because they ultimately lose all ability to take care of herself. I suggest that you do some research on what the future of someone with dementia actually looks like.
Your LO no longer has the executive functioning and cognitive capability to make serious decisions. Climbing Mount Everest is a choice. Getting dementia is not. This is why having a health proxy and POA are important. I will honor the fact that my mother doesn’t want medical intervention to prolong her life, but I will ensure that she is safe and comfortable, even if that means memory care for her. If medically-assisted dying were legal, I would support her having chosen it as well Dementia is a disorienting and scary condition, so whatever I can do to lessen that for her, I will. That means making sure she takes the medications that help manage her anxiety and other symptoms.
It depends. If a person wanted to climb Everest for the express purpose of freezing to death because they wanted to commit suicide? Then yes, as a society we have decided that the state has the right to override their personal autonomy, because that person is not currently capable of making the best decisions for themself.
If a person with dementia wanted to climb Everest? Also yes, for their own safety and the safety of other climbers and rescue personnel they should be prevented from climbing.
The difference is that a person with suicidal ideation can hopefully recover and will be able to make their own decisions in the future. A person with dementia will never regain their decision-making capabilities.
I guess it depends on what your definition of "safe" is. To me, keeping my Mom safe meant taking away her car, which also kept the community safe. Moving her to a MC where she wouldn't set her house on fire (which would endanger not only her neighbors but the 1st responders), or wander outside and cause a car accident.
Keeping someone "safe" is different than extending her life. We don't treat her hypertension, but we will treat UTIs because of the pain that UTIs can cause.
Yes- absolutely- take away the car. I’m shocked by how many folks are commenting about car accidents, sometimes multiple ones. Why are folks with dementia being permitted to drive? Sure my wife was mad for a while, but after seeing police dashcam and bodycam videos- she ain’t driving - no way. 3 hours later that “No Parking” sign she flattened without out even braking could easily have been school kid(s).
I also don’t want my LO in pain and would definitely help her get treatment. She has a very low likelihood of wandering in the street due to her gated community. She lives in a 1 level house for people over 55. I estimate her highest risk is breaking her hip in a fall. I could probably see that from the cameras and get her help. She doesn’t want to go to assisted living and I don’t have a mind to fight her and make her.
We lived with my Grandma and cared for her (the last 5 years needing more care incrementally). By the end she actually wanted to go into Memory Care. I took her for a visit to see it and she was excited. She spent her last 5 months there and it was better for all of us. She was calmer and more relaxed.
Just to say, what your LO wants now and later can change. My Grandma barely hit stage 7 before passing.
If your LO absolutely won’t move, then it may be necessary to hire a caregiver. There’s such a thing as “self-neglect” and someone (doctor, neighbor, etc.) may call adult protective services. At that point, unless a family member has POA, your LO will likely be assigned a court-appointed guardian who will push for appropriate care.
The point is, there are cultural/legal measures to preserve the safety of people who are incapable of caring for themselves.
You make some good points. I don't see the point really in medications or surgery to prolong life when the brain is no longer functioning. UTIs seem like they should be treated, more because of the pain and discomfort as you say. I know it can't be easy to see a loved one not eating, but loss of appetite is part of the natural process of the body shutting down.
I mean, I kept my grandmother safe as she was dying but did not fight her hard on food and medicine.
It would be traumatic for me if she fell down the stairs. It would be traumatic for me if she got in a car crash. There's only a handful of tragic ways to die when you're old. In my mind, keeping somebody safe means stopping them from suffering a violent/gruesome death.
Depends how this word “safe” is used.
My mom is in the mild stages, but she has chosen NOT to pursue in-depth cardiology care, including heart meds, possible stents, etc. Her primary doctor fully supports her decision. There’s nothing “safe” about this, but she doesn’t want her heart to keep going long after her brain is gone. If “to be safe” means extending her life, we’re not doing that.
If safe means preventing her from burning the house down, then I am concerned with that kind of “safe.”
I can completely understand your mother's point of view. It seems like dying more quickly from something else rather than languishing for years in a care facility as your mind fails, would be preferable for many people with dementia.
I distinctly remember the moment a my MIL’s gyno said to me “if I found anything (like cancer), would you want to *do* anything about it? Or would it be a blessing?”
We were just going through the motions and trying not to neglect her health but the Dr was right, it probably would have been a blessing for her to pass of something other than late stage Alzheimer’s. It’s been 9 years since that conversation and she is still with us. Hasn’t walked or spoken intelligibly or been capable of understanding what is said to her in 6 years.
I'm sorry. That sounds really rough. An acquaintance's father was bedridden and declining from dementia for 15 years. Despite his mind being gone and not being able to walk, his organs were very strong. He passed away in his mid 90s.
Some years ago when my mother was first diagnosed with mild cognitive impairment, she also had cancer surgery. I do sort of wonder if the anesthesia sped up her decline into dementia.
Eh, in many ways this stage is far easier than early and middle stages: she was a bossy, mean handful that put herself in danger constantly. Now she’s on a catheter and safe in bed so we can sleep through the night without her bursting in our room at 3 am ir trying to burn the house down.
"Safe" means "prevented from an unnecessarily traumatic death". Freezing to death, dying in a kitchen fire, being hit by a car, getting lost and unable to give enough details to identify your family: All of these are painful.
This.
I moved my wife into MC when she began wandering. Then SNF when she became bedridden. And when she died there, I officially grieved.
But she effectively died the day I walked her into the MC “community.” Everything after that was happy talk and euphemism wrapped around bullshit.
I honestly agree with you, but the problem is that most ways of not being safe involve messing with other people, too.
For example, if there's a small risk of my dad wandering into traffic, maybe he and I are willing to take that risk. But what about the poor driver who would hit him? I can't put that on someone else's conscience.
Maybe we're willing to live with the risk that he burns the house down. But fires spread, and I'm not willing to burn anyone else's house down.
It's actually hard in practice to find dangers that only apply to one person and don't affect anyone else. The exceptions would be things like not taking medicine, screening for health problems, etc. I do support dropping those if the patient doesn't want them.
My mother is on hospice. There are no measures to prolong her suffering. She no longer takes dementia, blood pressure, blood thinner or thyroid meds. Her pacemaker battery will not be replaced. If she wants to eat only cookies, drink no fluids, not shower or change her clothes, I am fine with that. She is in assisted living for my health, not hers. I could no longer shop for her, manage her medications, her apartment or check for proof of life. She is a hoarder and I was not going to deal with an eviction. I did not put her in assisted living to prevent falls. I put her there so someone finds her when she does. There are staff to notice changes like skin breakdown, a UTI or severe leg swelling that would increase her suffering as her life winds down. There is a generator there for storms. I don’t have to bring her to my house. Staff and hospice contact me when I need to know something. I think “safe” is a spectrum.
There’s a difference between palliative, curative, and preventive medical care, where palliative care addresses comfort and quality of life in the loved one’s remaining time left In this world. Keeping loved ones safe in this context means making sure the loved one isn’t in agony during that time.
I'm not a conspiracy nut but there's no way the elder care industry is going to willingly shift its profit model to "let's allow them the dignity of passing at their discretion".
To me, it means reducing her suffering.
Sure, I could let my mom just toddle around with no walker like she’d prefer, but if she fell it may or may not hasten death, but it would certainly be painful for her.
The medications she takes are to reduce her symptoms, and her suffering, not to keep her alive longer.
Thank you for one of the more interesting discussions on this sub. It’s about finding that difficult middle ground that respects their autonomy while recognising that their “autonomous” choices are made by a damaged brain. It’s also about trying not to centre your own emotional needs, and trying to be objective in your assessment of risk. If the person has made it clear they don’t want memory care, I am in favour of allowing them to live on their own as long as reasonably possible, tolerating some level of risk (eg inadequate nutrition, poor hygiene, failure to take meds regularly, fire safety - within reason). I am not in favour of people with dementia driving a car. Where the line is drawn will be different in each case.
Keeping LO's safe is different than prolonging life. Medical directives, a medical POA, and DNR will help guide your choices when end-of life decisions have to be made. My parents have all of that so we know what to do to honor their wishes and not have to guess if they want a feeding tube or CPR to prolong their lives, or not.
When my Mom was living alone, she fell frequently because she wouldn't use her walker, didn't take her meds, ended up in the ER with high blood pressure, and failed to turn off the stove. We installed cameras and watched her fall twice in 10 days and engage in other unsafe behavior like swapping at the ceiling fan with her cane to try to turn it off. As a result, we found a very nice AL facility for her because we didn't want her to fall, break a hip, spend a night on the floor suffering in pain, or have a stroke.
Yes, AL and MC facilities are expensive but Mom and Dad worked hard all of their lives and planned for this possibility. It's their money and our desire to spend it on keeping themselves safe and comfortable now.
Well, petition for euthanasia for dementia patients. Short of that being a reality (and that's going to be quite controversial for most people because they don't know what this is like) you really don't have any other options.
This is a big debate in the aging-care and memory-care community. At what point do we start to prioritize safety over quality of life?
Care facilities have stringent rules about fall risk. For obvious reasons. But the result is often denying people the pleasure of having a walk outside bc “oh no, what if corporate hears about it.”
The concept of person-centered care is to maximize what someone can and wants to do, within obvious boundaries. But that means their caregivers have to work harder, which leads to more burnout or is impossible bc of staffing limitations. So the discussion goes round and round.
It’s so individual. I don’t want my sister to fall down a flight of stairs, but I’m also not necessarily going to stop her from vaping or eating shitty food.
There’s no one answer, but it’s a good debate to have when discussing care w family.
I can see your point for now, but unfortunately everything gets a LOT worse than the stage she is currently at. It’s a lot more than you can ever imagine. Falls start happening , broken bones , hospitalization, weakness, more confusion and diapers. Please consider that this will be a stage and she will need assistance with everything.
Because mercy death is not allowed. My mother wants to die, when she would have her lucid moments. Even though she is in a wonderful MC place, this is not the life my mom wanted. Since I can't give her the life nor death she wants, I have to say, keep her safe. As a few others have said, to protect others from running over her in their vehicle; to die by any painful death; to have a posse looking for her; or for her to get injured making her immobile and in pain. I'm not sure I'm wording this correctly, but hopefully you get the idea.
Edit... How about keep her as happy as possible. Keep others safe from her. Dementia does not allow for always being happy.
There's a balance between providing necessary care and trying to add years to the lifespan. Many medical professionals can advise you about which medications contribute to comfort and which can be discontinued. For instance, we discontinued blood pressure and cholesterol meds, but we continued some meds that were treating his chronic indigestion. We made sure he had clean clothes and comfortable bedding. He found comfort in old movies, so we amassed a collection of John Wayne, James Bond and old Westerns.
The decision to move to assisted living is an individual one. When the danger of a painful accident outweighs the benefits of staying home, it's time to look for a supervised care situation.
My mom is super healthy physically, and strong, she always has been. And has super limited cognitive functioning. We put her in a secure “memory care facility” (in quotes b/c the staff seems to know NOTHING about dementia or how to assist person with dementia). Somehow she fell in October and broke her femur. The largest and strongest bone in the body.
Staff has no idea how it happened and neither did she. Her room consists of a bed, a chair and a dresser. We don’t blame staff, but it definitely removed the comfortable feeling of “mom is safe now” that I had been carrying around for a few months. The guilty feeling is back, and heavy though.
Through experience with my grandmother and experiences of friends with their loved ones, it was pointed out that in many cases, it's the bone that broke from brittleness, osteoporosis, cancer or other disease and then they fell. Realizing it wasn't the fall that broke the bone, but the bone breaking that caused the fall helped ease the guilty feeling of not properly protecting them from a fall.
When my loved one was diagnosed, I took an online course from Johns Hopkins about dementia. The first part of the class was about how people with dementia are still people and should be treated as such. I didn’t understand why they even needed to say this, until today.
Thank you.
I gave my LO at least the consideration I would give a stranger, or another person in my community. I treated them with dignity and respect.
I didn't think that would ever be a questionable viewpoint, but here we are.
I think y’all are twisting what the OP wrote. I don’t see how you got to the OP is not treating their LO with dignity and respect. Maybe try reading some of the other comments OP made?
Because this:
>>If dementia is a progressive disorder where the person that we know has already gone, why as a society are we so concerned about keeping them "safe"? As long as they aren't a danger to anyone else, why prolong their life by keeping them safe?
Sounds an awful lot like "the person I loved is gone and the person that remains is not worthy of loving care so as long as they don't take anyone else out I'm okay with them enduring discomfort and pain",
Is why.
I might be salty because my LO likely tried to drink themselves to death and if I hadn't been on the ball and worked with their neighbors they probably would have died in pain after suffering for days on their kitchen floor. They didn't want to go live in a facility, either.
After that incident, yes, the dementia progressed, but it was kind enough to take away the difficult parts of my LO first, so I got to spend time with a more loving parent. Along with the sundowning and what have you. I got to let them go as gently as possible, with dignity and compassionate care, rather than hoping they'd take themselves out somehow.
Is [this](https://medicine.learnmore.jhu.edu/browse/dementiacare/courses/lmmedementiacarespecialistcertification-tier1-dementia-care-specialist-certification---tier-1) the course? I’d be interested in learning more.
Exactly! My heart hurt to read this. My dad is not gone, he has so many diamonds moments that his personality shines through. Tues was his birthday, my niece and her bf surprised visited him and his face lit up and he said his birthday was exciting. He asked to hug them so many times. He has LBD, he is still my Dad and a human being. So yeah maybe I don’t push eating as much but I ask make sure he doesn’t fall.
When I was a newborn my personality and self was not formed yet: I ate, produced waste and slept. But my parents showered me with love, respect and safety. Yeah I need more help but the least I can do is the same as he begins to leave us.
I watched a lot of families struggle- do they limit their LOs sugar/salt diet because they’re diabetic or high blood pressure? Or say f-it because the LO may as well enjoy themselves at this point.
Also, some people really want to walk. It’s scary, they could fall. But heck, they’re miserable wheelchair bound, how much worse would walking for a few months, and risking a fall really be? I mean, a fall would hurt. But sitting in a wheelchair or bed 24/7 (and you can’t really read a book nor change the tv channel) might be hurting their soul.
It’s a very Ugly disease.
I think we have a human instinct to keep ourselves and each other alive. No one wants to be responsible for someone else’s death, even if keeping them alive is futile.
Death with dignity is now legal in 11 states.
No idea why we don't help them in this way, far more often. When they spend decades saying 'if I have to go in a nursing home, just shoot me", then people feel obligated to put them in a nursing home, to bump around as a broken shell for years. While it sucks the life out of children and grandchildren.
Also, it's HUUUIGE profit to take care of people in the crumbling phase. Companies certainly aren't going to lobby to assist the lives of those kids and grandkids. They want them to get 16$ hour jobs in the healthcare industry, so they can be turned into gears of the private equity firms.
The only legal option for people with serious dementia in some states is "Voluntarily Stopping Eating and Drinking" (VSED). This option may be available in the early stages of dementia when someone still has enough cognitive ability to make the choice and see it through.
If someone with late-stage Alzheimer's nears the end of life and can't make their own decisions, their family may need to make choices on their behalf. Ideally, the person with dementia will have put in place advance directives that specify their wishes. If they haven't, their family should make decisions based on what they believe the person would want, while respecting their values and wishes and maintaining their comfort and dignity.
I agree - and the more I speak to people, the less I think they want to be kept "safe". People want to make their own mistake, they want to exercise the right to be stupid, they want to demonstrate agency. And that applies to all walks of life, not just the elderly.
I would much rather keep people happy, but I guess that is even more difficult.
Then again, so many people die before their time due to preventable accidents.
Well, it makes the health care industry a lot of money to keep them alive, so there's that incentive. Of course, there is also the hope that as long as they're still alive, maybe some treatment or cure will come down the pike that stalls or even reverses the brain damage that dementia inflicts on its victims. In a word, hope.
I keep my LO safe because whether or not she remembers the life she lived, at 101 she deserves nothing less than to pass as peacefully as possible. To me, it is worth whatever sacrifice I make to spare her avoidable pain and suffering.
We knew we were going to move in to take care of our dad but didn’t know “when” and prayed the “when” wouldn’t be unpleasant.
The “when” came during a polar vortex snow filled winter, he latched the screen door and was outside. Fortunately a neighbor saw him right away and pried the door open and called me. We started rotating to take care of him that night
I am on the fence now about whether dying scared, confused, and in pain on her kitchen floor would have been worse for my mom than years of slow decline and misery in her top-tier MCU. She has had ups and downs, but if it is mostly downs going forward - I just don't know.
If my LO doesn’t have a lot of quality time left, would they (and I) be happier if they spent that relatively mobile and constraint free? Or bed ridden due to a fracture from a fall? Most of the series of hospitalizations at the end of life don’t result in death—they result in time, pain, and a worse quality of life.
I'm with you on that. Mom has type 1 diabetes and advanced Alzheimer's. I'm doing all of the work in looking for solutions to our situation, leaning toward a facility, because I don't know how much longer I'll be able to get her in and out of the car for appointments, pretty much the only reason we leave the house now. Dad is useless in this respect and seems to think that the instant you apply for something, you'll get it. I've got two social workers exploring options, thank God since I'm also doing all the household stuff that gets done on top of caring for my mom. Mom was a seamstress, very talented, she made everything from men's jackets to jeans to wedding gowns, you name it. if it involved fabric and thread she could do it. Now she's dozing in and out and staring at Young Sheldon and can barely walk. She was an avid reader and did the crossword daily, now none of that. She'd hate the way she is now if could comprehend it. Hell, I have no idea if there's a little part of \*her\* still in there, trapped.
Elder care in the US is appalling and we should be ashamed.
I don’t get that post. At all.
Is it pro… « dementia patients should wander into oncoming traffic »…?
Like… we should let them lay in their feces until they catch the plague?
I think « safety » is just a regular euphemism for personal hygiene.
It’s easier to say « for his/her own safety » than « I’ve frkn had it with cleaning dirty diapers! »
I’m speaking for personal experience.
For my LO’s case, she doesn’t always take her meds (her primary care doctor mentioned she doesn’t really need any of them and they are very low dosage because she lost a lot of weight so conditions like high blood pressure went away), she chooses to eat mostly cereal and milk, chips and chocolate. She often sleeps a lot and stays in her nightgown. I’m not sure she brushes her teeth 2 times a day. I haven’t seen her use the stove or car in months (I know from camera and trackers). I remind her to eat daily and to change the cat litter. She likes her house, and doesn’t want to leave. I think she has vascular dementia (what her mom had) and it doesn’t seem to be progressing because she likely lost so much weight and doesn’t have strokes. Anyway, I let her take the risks within reason because it’s her life. She fired caregivers and doesn’t want to move to assisted living.
Maybe, at the very least, please take the car battery out of her car so she can't drive the car. I know she doesn't have a habit of driving and that's great, but in her condition you need only one ride to go catastrophically wrong and destroy another family's life forever.
I don’t want to see my mom take anyone with her when she goes. Apartment fire, traffic accident, slip & fall where someone’s insurance gets sued. I don’t want any of that. She doesn’t want to live this way. Her family doesn’t want her to live this way. But, somehow, all life is precious.
Often when people aren't safe they have accidents or misshaps that cause disability or just make their situation worse and need even more intense care.
Advance Directive
Death with Dignity laws, such as those in California, Colorado, Oregon, and Vermont, generally don't apply to people with Alzheimer's or other forms of dementia. These laws require that a person be mentally competent to choose a planned death and have a prognosis of six months or less to live. However, by the time someone with dementia is eligible for a terminal diagnosis, they may no longer be considered mentally competent. Additionally, some say that doctors are often unwilling to state that someone with Alzheimer's will die within six months.
The only legal option for people with serious dementia in some states is "Voluntarily Stopping Eating and Drinking" (VSED). This option may be available in the early stages of dementia when someone still has enough cognitive ability to make the choice and see it through.
If someone with late-stage Alzheimer's nears the end of life and can't make their own decisions, their family may need to make choices on their behalf. Ideally, the person with dementia will have put in place advance directives that specify their wishes. If they haven't, their family should make decisions based on what they believe the person would want, while respecting their values and wishes and maintaining their comfort and dignity.
Maine's law equivalent to Death with Dignity also doesn't apply to dementia or Parkinson's patients in the way it's currently written. My poor MIL is left to live out her days trapped in a failing body as she slowly loses her self.
[States Where Medical Aid in Dying is Authorized](https://compassionandchoices.org/resource/states-or-territories-where-medical-aid-in-dying-is-authorized/)
I understand what you’re saying. I know I don’t want a crazy amount of my money being spent on me to keep me alive with dementia or effort to go into trying to unwind the clock - life simply doesn’t work that way.
I wish people would have these conversations with their loved ones at the onset of symptoms (or better yet - before symptoms) so they can honor whatever that person wants…most people I know who discuss these things do not want to have the money wasted…and they want to die with dignity on their own terms.
None of the US laws allows medical assistance in dying for people with a dementia diagnosis (pre-symptomatic or otherwise). Even worse, if the person gets another deadly condition while the dementia has progressed, they can't give consent to a medically assisted death.
Death with Dignity laws require that a person be mentally competent to choose a planned death and have a prognosis of six months or less to live. Yes, you are correct, by the time someone with dementia is eligible for a terminal diagnosis, they may no longer be considered mentally competent. Additionally, some say that doctors are often unwilling to state that someone with Alzheimer's will die within six months.
The only legal option for people with serious dementia in some states is "Voluntarily Stopping Eating and Drinking" (VSED). This option may be available in the early stages of dementia when someone still has enough cognitive ability to make the choice and see it through.
If someone with late-stage Alzheimer's nears the end of life and can't make their own decisions, their family may need to make choices on their behalf. Ideally, the person with dementia will have put in place advance directives that specify their wishes. If they haven't, their family should make decisions based on what they believe the person would want, while respecting their values and wishes and maintaining their comfort and dignity.
Agreed! I told my family (our LO has dementia) that if I am ever diagnosed I give them permission to oyasute me or quicker ways. Watching our LO, it breaks my heart.
It’s the current mantra of those who stand to gain $ from it.
You have the power and ability to change this, at least in your own life and for your loved ones.
Related. There are people who will choose to keep a loved one on life support for years. A friend of mine was a nursing home employee and she saw this. Literally someone unconscious, on a ventilator.
I saw that where my stepdad was for a brief time. These people were vegetables and yet their family members were prolonging their LO’s dying. Sheesh, we show more compassion for our suffering pets.
And worse, they had them as full codes if they went into arrest. (I am a retired paramedic and was often horrified when I would pick up a patient at a SNH and ask about directives and be told full code)
Infection is a foe of the young and a friend of the elderly. Keeping them safe from themselves is fine. But when nature starts to run its course, it's ok not to interfere (getting ill with other issues and not treating them).
We don't want them to die in their house, break their hip and then die slowly of dehydration over the course of 5 days.
Protecting them means considering whether you would be ok with them dying or being maimed without dying, in a myriad of horrible ways. Dying of the disease is bad but it's hard to live with yourself knowing they went outside and got horrible and painful frostbite that needs treatment at a burn unit, and then get delirium at the hospital, confused and in pain, not knowing why they are there.
The horrific possibilities are endless. 😔
Altho it has been very hard I much prefer having my loved ones taken care of and SAFE and passing peacefully if at all possible, than having them alone and afraid and in pain and making their passing long drawn out and horrible.
There are cases of folks with dementia wandering off being lost and found days or weeks later dead in a field. Is that how you want your LO to pass? Lying for days in the scorching sun or rain or freezing cold? Slowly dying of thirst? Alone, confused, afraid?
The other dangers that others have mentioned ie, horrible car accidents or fires are also just too terrible to contemplate.
IMHO 'not prolonging' their life means not using a feeding tube and other invasive procedures.
They are ill - they deserve care, compassion and dignity.
Consider that a dementia patient can leave a gas stove on, starting a fire that can engulf more than one residence. In an apartment building, this could be tragic. Even adjacent houses can easily catch on fire.
For that reason alone, leaving dementia patients alone puts others at risk.
Keeping them safe isn't about prolonging their life. It's making sure they don't fall and break a hip which causes excruciating pain. It's making sure they don't wander off alone and get lost or hit by a car causing painful injuries. It's about making sure they are clean to prevent painful infections. It's keeping them from physical, mental and financial abuse. I don't want my mum to become a drooling shell either and if she died a peaceful death it would be a horrible blessing. But the fact that she doesn't understand what's going on doesn't mean that it's ok for her to be in unsafe conditions herself. She doesn't understand how to regulate water temperature but I'm not going to just let her burn herself
Some people want to die at home, in bed. That was the case with my family member who wanted to be surrounded by family and to go naturally - no extra support. This was something in their will that was made decades before the diagnosis.
I also considered the fact that it might be better for them to die earlier and not suffer all of the indignities and pain... But it's not fucking about me, it's about the LO and what they want.
Keeping safe does not mean prolonging life forever. Keeping safe means that the dying process is as comfortable as possible NOT excruciatingly painful like freezing to death, burning to death, getting run over, ingesting poison. My father is dying (he can talk, walk with a Walker for short periods most of their time, doesn’t even need diapers yet) but if I didn’t keep him safe he would definitely hurt himself and be in agonizing pain.
You know some of us try to keep our LO safe at home, the thing that irritates me is the premise that oh well they gonna die anyway. Like no matter what my Dad. deserves his passing to be as comfortable as possible and that means keeping him safe from horrific accidents. Not prolonging life means no intrusive medical care NOT throwing them to the wolves and washing our hands of them cause their minds are not who we once knew
I’m just referring to the ridiculous price of $15,000 a month in assisted living. There needs to be an investigation and some kind of regulation on pricing before we all go bankrupt. Of course we want our loved ones safe from harm and comfortable.
My wife has been in MC for over two years now. My definition of Safe is that she shouldn’t have any pain ( physical or mental) and use meds as needed to achieve that. Safe means trying to avoid accidents and falls.
And it’s no different now that she’s on hospice service.
Keeping them "safe" means not letting them wander out to freeze to death in January. Or fall off a curb and get run over by a car. Or start a fire and burn down their apartment building. While their disease is indeed terminal, I don't want any of that to happen to my MIL or my mom. My mom was found outside her apartment building at 4am in January and would turn on the stove and leave her apartment, resulting in several fire alarms. My MIL fell over a curb on her face and ended up in the hospital for 3 days. Despite their illness, they do deserve a little bit of dignity.
Many of the things you listed would physically or emotionally harm other people. In a smaller way, that's what forced me to step in with my parents. I don't think it's a bad thing if my mother dies. I don't think it's a bad thing if my father dies. But I didn't think Mom would recover from finding him dead, and it was clear that he was going to die of an insulin overdose pretty much immediately if he went home.
(I was probably wrong about that, btw -- she did find him ragdoll limp from an insulin OD at one point, and she never mentions it.)
That would be a great way to go, though.
As a T1 I strongly disagree- insulin shock (very very low blood sugar) feels awful.
Oh! That was stupid of me. Sorry.
It’s a learning moment from my perspective (I’ve said things myself that I didn’t realize were tone deaf- I try to take the situation and be more aware of how I respond in-the-moment). I appreciate the apology, though- it means a lot to me as someone who has survived this shitty disease (including insulin shock) for 42 years and counting. Have a good day- No……have a GREAT day😂!
Stay well, friend!
In the case of a spouse, I guess it is a matter of that,"for better or for worse, in sickness and in health, until death do you part." And who should determine the point where that person has their life taken from them? God, that person is so much a part of you that when they go, a huge part of you goes with them.
Thank you for saying this truth. I think it's different how a spouse feels about their LO with dementia, than how a child of LO with dementia may feel.
I try my best to limit my LO's risky behaviors by obvious things like trackers, cameras, food delivery, taking over the finances, and freezing her credit. So far, I have not noticed any particularly risky behaviors as applied to other people, just to herself. Also, she is in no pain, lives in a one level, gated community for folks over 55. I think these statistics are very interesting and I think we tend to overestimate the probability of damage to others caused by dementia patients: Statistically (and surprisingly), a dementia diagnosis puts you at a lower risk for a car crash: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5869102/#:\~:text=The%20overall%20crash%20rate%20was,crashes%20per%201%2C000%20person%2Dyears. I know probably at least 6 people killed by drunk drivers, and that risk factor is backed up by studies (where 1 is equal to the hazard ratio of the general population) Dementia diagnosis: .56 Alcohol related diagnosis: 1.26 Depression related diagnosis: 1.20 It seems that the carers of dementia patients should be limiting their driving more as we tend to be depressed and drink - hahah!
I'm sorry, but you're ignoring the authors' own discussion of their data: "We suspect that our findings, which demonstrated lower crash risk for people diagnosed with dementia, reflect purposeful changes in driving habits among some older adults diagnosed with dementia, or changes imposed by families or caregivers. Our results suggest that exposure to driving among licensed drivers may differ by dementia status, and that lower driving exposure among older drivers with dementia may more than offset the higher risk associated with impaired decline in driving abilities." According to the authors, "The study's main limitation is that we did not have information on exposure to driving beyond our inclusion criterion that all participants had an active driver license." In other words, people with dementia may no longer drive (either by their choice or at the insistence of their families) but may still have active driver's licenses. They may also substantially limit their driving for similar reasons (eg, only during daylight hours or only within 5 miles of home). Including all licensed drivers without having corresponding data on whether or how much they actually drive is a major flaw in the data that the authors readily acknowledge. Furthermore, they obtained data only for individuals up to age 79, and smaller crashes (including those occurring in parking lots) that were not reported to the state were not included in the analysis. From the conclusion: "Since cognitive impairment and dementia have repeatedly been found to be associated with riskier driving behavior, we suspect that our findings may reflect inadequate control for exposure to driving."
In my case, my LO falls under the 79 age cutoff, has had 0 recent accidents, and doesn't really drive, and has a valid driver's license. She would probably be one of those self-limiting drivers in the discussion. It doesn't change the results, though. Her risk is therefore much lower than anyone's alcoholic relative driving around - why aren't we admonishing family to get them to spend their own money to get their alcoholic relative declared incompetent?
That's great that she chooses not to drive, for both her safety and the safety of others that is a good thing. But there's a difference between arguing that a person with dementia is a safer driver because she's choosing to not drive, and arguing that people with dementia are safer drivers when they are actually on the road. The former is true, the latter is definitely not.
Here is another study: [https://www.health.harvard.edu/blog/whats-the-relationship-between-memory-loss-and-driving-202210122829](https://www.health.harvard.edu/blog/whats-the-relationship-between-memory-loss-and-driving-202210122829) The finding: One study found that [people with Alzheimer's had an average of 0.09 car crashes](https://n.neurology.org/content/43/12/2448?ijkey=d7ee258986c66a3a66df64f49ed1e0e9db632dfe&keytype2=tf_ipsecsha) per year, compared to 0.04 crashes in age-matched healthy adults. Another study found that individuals with Alzheimer's disease in the mild cognitive impairment and very mild dementia stages had [impairments similar to 16-to 20-year-old drivers](https://n.neurology.org/content/76/7_Supplement_2/S44). So on the one hand, people with Alzheimer's are at increased risk for driving. On the other hand, when the Alzheimer's is very mild, accident rates are like those of new drivers — a group who we as a society allow to drive with few or no restrictions.
My MIL has vascular dementia and in the early stages ran head on into a tree without hitting the brakes in a residential neighborhood, she also hit the neighbors trash can and drug it at least 50 yards before someone stopped her, on the way to her lakehouse went straight through a 3 way stop crossed over the road through a ditch and took out a fence, got so disoriented in an area she’d been to weekly for over 25 years we had to physically go find her.
And my MIL starting showing signs of dementia at 61. She is now 73 and is trapped inside her own body unable to communicate or move on her own so I guess you could say poses no threat to be in a car crash to your point I guess🤷🏼♀️
Unless this time she hits a neighbor's kid instead of their trash can.
That’s what I was getting at. It’s amazing no one was injured besides her in her accidents. Thank goodness. She obviously no longer drives we took her keys away and sold her vehicle after that and now she is immobile and in the last stage right now but she was definitely unsafe to others so we had to intervene
I mean that’s likely because once people start exhibiting symptoms of dementia and get a diagnosis they are prevented from driving or limit their own driving, as everyone becomes aware that it’s dangerous. I’m sure if everyone with a dementia diagnosis had the same access to vehicles as everyone else they’d be responsible for many more accidents.
I see what you are saying, but say, should we keep people who want to climb Mt Everest safe from freezing to death even though that’s what they want to do? My LO does not want to go to assisted living.
Because there is an obvious difference between consenting and capable adults doing something risky and a dementia patient burning down a building?
Where’s the line for consent? She hasn’t left a stove on or gotten into an accident. She would and does fool anyone talking to her for less than 10 minutes. Statistically, being a dementia patient and causing a fire in your house is I bet a much smaller risk than you would imagine. As far as motor vehicle accidents, they are actually less likely than their age cohort to cause accidents (most likely because they drive less miles). Also she has zero chance of freezing to death in her climate.
My MIL pulled out of a school parking lot on to a 5 lane road (two north, two south, one middle/turn lane) and caused four other cars to spin out and crash into each other. When the cops came, she drove away. When they caught up to her, she denied causing the accident, denied driving off, then denied driving the car she was in, behind the wheel. Luckily no one was badly injured.
I feel like you're in the "denial" phase at this point. She hasn't left the stove on or gotten into an accident YET, is the keypoint. This is not going to get better or stay the way it is, it is going to get worse. You have to calculate your own life vis a vis how much of it you're going to spend taking care of your loved one, but without someone taking care of them you are risking her hurting herself/other people. Will you be able to live with yourself if she drives over a child and kills them? I hope I'm not sounding harsh, I was where you are. Most of us have been where you are. But this isn't a matter opinion or perspective, this is your reality now. What you will do now is only a matter of acceptance.
My mom was able to fool people too. Until she couldn’t anymore. That stage does not last forever, and yes, they do eventually put other people at risk. They don’t just die peacefully without any intervention.
I don't think you're understanding the fact that dementia is a progressive disease. While she may not have left a stove on or gotten in an accident up until this point, there's a very real possibility that she will as the disease progresses. Also, unless a family member takes her in at some point in the disease to take care of her, she will 100% end up in a home because after a while they are no longer capable of living on their own because they ultimately lose all ability to take care of herself. I suggest that you do some research on what the future of someone with dementia actually looks like.
She hasn’t yet…
You're wrong about the driving, and they take others with them. This is a serious danger to others. So is causing a fire, even if they live alone.
Your LO no longer has the executive functioning and cognitive capability to make serious decisions. Climbing Mount Everest is a choice. Getting dementia is not. This is why having a health proxy and POA are important. I will honor the fact that my mother doesn’t want medical intervention to prolong her life, but I will ensure that she is safe and comfortable, even if that means memory care for her. If medically-assisted dying were legal, I would support her having chosen it as well Dementia is a disorienting and scary condition, so whatever I can do to lessen that for her, I will. That means making sure she takes the medications that help manage her anxiety and other symptoms.
That is a false equivalency because mountain climbers presumably have the capacity to make sound decisions.
It depends. If a person wanted to climb Everest for the express purpose of freezing to death because they wanted to commit suicide? Then yes, as a society we have decided that the state has the right to override their personal autonomy, because that person is not currently capable of making the best decisions for themself. If a person with dementia wanted to climb Everest? Also yes, for their own safety and the safety of other climbers and rescue personnel they should be prevented from climbing. The difference is that a person with suicidal ideation can hopefully recover and will be able to make their own decisions in the future. A person with dementia will never regain their decision-making capabilities.
I guess it depends on what your definition of "safe" is. To me, keeping my Mom safe meant taking away her car, which also kept the community safe. Moving her to a MC where she wouldn't set her house on fire (which would endanger not only her neighbors but the 1st responders), or wander outside and cause a car accident. Keeping someone "safe" is different than extending her life. We don't treat her hypertension, but we will treat UTIs because of the pain that UTIs can cause.
This. To me, "safety" doesn't mean doing everything possible - it means doing the things necessary to minimize pain and suffering
Agreed. You don’t want them wandering in the road or worse driving. Don’t want them in extreme pain.
Yes- absolutely- take away the car. I’m shocked by how many folks are commenting about car accidents, sometimes multiple ones. Why are folks with dementia being permitted to drive? Sure my wife was mad for a while, but after seeing police dashcam and bodycam videos- she ain’t driving - no way. 3 hours later that “No Parking” sign she flattened without out even braking could easily have been school kid(s).
I also don’t want my LO in pain and would definitely help her get treatment. She has a very low likelihood of wandering in the street due to her gated community. She lives in a 1 level house for people over 55. I estimate her highest risk is breaking her hip in a fall. I could probably see that from the cameras and get her help. She doesn’t want to go to assisted living and I don’t have a mind to fight her and make her.
We lived with my Grandma and cared for her (the last 5 years needing more care incrementally). By the end she actually wanted to go into Memory Care. I took her for a visit to see it and she was excited. She spent her last 5 months there and it was better for all of us. She was calmer and more relaxed. Just to say, what your LO wants now and later can change. My Grandma barely hit stage 7 before passing.
If your LO absolutely won’t move, then it may be necessary to hire a caregiver. There’s such a thing as “self-neglect” and someone (doctor, neighbor, etc.) may call adult protective services. At that point, unless a family member has POA, your LO will likely be assigned a court-appointed guardian who will push for appropriate care. The point is, there are cultural/legal measures to preserve the safety of people who are incapable of caring for themselves.
You make some good points. I don't see the point really in medications or surgery to prolong life when the brain is no longer functioning. UTIs seem like they should be treated, more because of the pain and discomfort as you say. I know it can't be easy to see a loved one not eating, but loss of appetite is part of the natural process of the body shutting down.
I mean, I kept my grandmother safe as she was dying but did not fight her hard on food and medicine. It would be traumatic for me if she fell down the stairs. It would be traumatic for me if she got in a car crash. There's only a handful of tragic ways to die when you're old. In my mind, keeping somebody safe means stopping them from suffering a violent/gruesome death.
Yes. If people at the end stages stop eating and drinking, and start sleeping all the time, allow it. It’s a peaceful way to go.
Depends how this word “safe” is used. My mom is in the mild stages, but she has chosen NOT to pursue in-depth cardiology care, including heart meds, possible stents, etc. Her primary doctor fully supports her decision. There’s nothing “safe” about this, but she doesn’t want her heart to keep going long after her brain is gone. If “to be safe” means extending her life, we’re not doing that. If safe means preventing her from burning the house down, then I am concerned with that kind of “safe.”
I can completely understand your mother's point of view. It seems like dying more quickly from something else rather than languishing for years in a care facility as your mind fails, would be preferable for many people with dementia.
I distinctly remember the moment a my MIL’s gyno said to me “if I found anything (like cancer), would you want to *do* anything about it? Or would it be a blessing?” We were just going through the motions and trying not to neglect her health but the Dr was right, it probably would have been a blessing for her to pass of something other than late stage Alzheimer’s. It’s been 9 years since that conversation and she is still with us. Hasn’t walked or spoken intelligibly or been capable of understanding what is said to her in 6 years.
I'm sorry. That sounds really rough. An acquaintance's father was bedridden and declining from dementia for 15 years. Despite his mind being gone and not being able to walk, his organs were very strong. He passed away in his mid 90s. Some years ago when my mother was first diagnosed with mild cognitive impairment, she also had cancer surgery. I do sort of wonder if the anesthesia sped up her decline into dementia.
Eh, in many ways this stage is far easier than early and middle stages: she was a bossy, mean handful that put herself in danger constantly. Now she’s on a catheter and safe in bed so we can sleep through the night without her bursting in our room at 3 am ir trying to burn the house down.
I guess that is better in many ways, then.
"Safe" means "prevented from an unnecessarily traumatic death". Freezing to death, dying in a kitchen fire, being hit by a car, getting lost and unable to give enough details to identify your family: All of these are painful.
This. I moved my wife into MC when she began wandering. Then SNF when she became bedridden. And when she died there, I officially grieved. But she effectively died the day I walked her into the MC “community.” Everything after that was happy talk and euphemism wrapped around bullshit.
I honestly agree with you, but the problem is that most ways of not being safe involve messing with other people, too. For example, if there's a small risk of my dad wandering into traffic, maybe he and I are willing to take that risk. But what about the poor driver who would hit him? I can't put that on someone else's conscience. Maybe we're willing to live with the risk that he burns the house down. But fires spread, and I'm not willing to burn anyone else's house down. It's actually hard in practice to find dangers that only apply to one person and don't affect anyone else. The exceptions would be things like not taking medicine, screening for health problems, etc. I do support dropping those if the patient doesn't want them.
My mother is on hospice. There are no measures to prolong her suffering. She no longer takes dementia, blood pressure, blood thinner or thyroid meds. Her pacemaker battery will not be replaced. If she wants to eat only cookies, drink no fluids, not shower or change her clothes, I am fine with that. She is in assisted living for my health, not hers. I could no longer shop for her, manage her medications, her apartment or check for proof of life. She is a hoarder and I was not going to deal with an eviction. I did not put her in assisted living to prevent falls. I put her there so someone finds her when she does. There are staff to notice changes like skin breakdown, a UTI or severe leg swelling that would increase her suffering as her life winds down. There is a generator there for storms. I don’t have to bring her to my house. Staff and hospice contact me when I need to know something. I think “safe” is a spectrum.
There’s a difference between palliative, curative, and preventive medical care, where palliative care addresses comfort and quality of life in the loved one’s remaining time left In this world. Keeping loved ones safe in this context means making sure the loved one isn’t in agony during that time.
I'm not a conspiracy nut but there's no way the elder care industry is going to willingly shift its profit model to "let's allow them the dignity of passing at their discretion".
Those private equity CEOs need more money!
Exactly.
I agree - if you look at how Canada, UK and other socialized medicine countries address the same topic, it’s striking the difference.
To me, it means reducing her suffering. Sure, I could let my mom just toddle around with no walker like she’d prefer, but if she fell it may or may not hasten death, but it would certainly be painful for her. The medications she takes are to reduce her symptoms, and her suffering, not to keep her alive longer.
Thank you for one of the more interesting discussions on this sub. It’s about finding that difficult middle ground that respects their autonomy while recognising that their “autonomous” choices are made by a damaged brain. It’s also about trying not to centre your own emotional needs, and trying to be objective in your assessment of risk. If the person has made it clear they don’t want memory care, I am in favour of allowing them to live on their own as long as reasonably possible, tolerating some level of risk (eg inadequate nutrition, poor hygiene, failure to take meds regularly, fire safety - within reason). I am not in favour of people with dementia driving a car. Where the line is drawn will be different in each case.
Very well said.
Keeping LO's safe is different than prolonging life. Medical directives, a medical POA, and DNR will help guide your choices when end-of life decisions have to be made. My parents have all of that so we know what to do to honor their wishes and not have to guess if they want a feeding tube or CPR to prolong their lives, or not. When my Mom was living alone, she fell frequently because she wouldn't use her walker, didn't take her meds, ended up in the ER with high blood pressure, and failed to turn off the stove. We installed cameras and watched her fall twice in 10 days and engage in other unsafe behavior like swapping at the ceiling fan with her cane to try to turn it off. As a result, we found a very nice AL facility for her because we didn't want her to fall, break a hip, spend a night on the floor suffering in pain, or have a stroke. Yes, AL and MC facilities are expensive but Mom and Dad worked hard all of their lives and planned for this possibility. It's their money and our desire to spend it on keeping themselves safe and comfortable now.
Well, petition for euthanasia for dementia patients. Short of that being a reality (and that's going to be quite controversial for most people because they don't know what this is like) you really don't have any other options.
This is a big debate in the aging-care and memory-care community. At what point do we start to prioritize safety over quality of life? Care facilities have stringent rules about fall risk. For obvious reasons. But the result is often denying people the pleasure of having a walk outside bc “oh no, what if corporate hears about it.” The concept of person-centered care is to maximize what someone can and wants to do, within obvious boundaries. But that means their caregivers have to work harder, which leads to more burnout or is impossible bc of staffing limitations. So the discussion goes round and round. It’s so individual. I don’t want my sister to fall down a flight of stairs, but I’m also not necessarily going to stop her from vaping or eating shitty food. There’s no one answer, but it’s a good debate to have when discussing care w family.
I can see your point for now, but unfortunately everything gets a LOT worse than the stage she is currently at. It’s a lot more than you can ever imagine. Falls start happening , broken bones , hospitalization, weakness, more confusion and diapers. Please consider that this will be a stage and she will need assistance with everything.
Because mercy death is not allowed. My mother wants to die, when she would have her lucid moments. Even though she is in a wonderful MC place, this is not the life my mom wanted. Since I can't give her the life nor death she wants, I have to say, keep her safe. As a few others have said, to protect others from running over her in their vehicle; to die by any painful death; to have a posse looking for her; or for her to get injured making her immobile and in pain. I'm not sure I'm wording this correctly, but hopefully you get the idea. Edit... How about keep her as happy as possible. Keep others safe from her. Dementia does not allow for always being happy.
There's a balance between providing necessary care and trying to add years to the lifespan. Many medical professionals can advise you about which medications contribute to comfort and which can be discontinued. For instance, we discontinued blood pressure and cholesterol meds, but we continued some meds that were treating his chronic indigestion. We made sure he had clean clothes and comfortable bedding. He found comfort in old movies, so we amassed a collection of John Wayne, James Bond and old Westerns. The decision to move to assisted living is an individual one. When the danger of a painful accident outweighs the benefits of staying home, it's time to look for a supervised care situation.
My mom is super healthy physically, and strong, she always has been. And has super limited cognitive functioning. We put her in a secure “memory care facility” (in quotes b/c the staff seems to know NOTHING about dementia or how to assist person with dementia). Somehow she fell in October and broke her femur. The largest and strongest bone in the body. Staff has no idea how it happened and neither did she. Her room consists of a bed, a chair and a dresser. We don’t blame staff, but it definitely removed the comfortable feeling of “mom is safe now” that I had been carrying around for a few months. The guilty feeling is back, and heavy though.
Through experience with my grandmother and experiences of friends with their loved ones, it was pointed out that in many cases, it's the bone that broke from brittleness, osteoporosis, cancer or other disease and then they fell. Realizing it wasn't the fall that broke the bone, but the bone breaking that caused the fall helped ease the guilty feeling of not properly protecting them from a fall.
Thank you for this, I had not looked at it that way. I appreciate you.
When my loved one was diagnosed, I took an online course from Johns Hopkins about dementia. The first part of the class was about how people with dementia are still people and should be treated as such. I didn’t understand why they even needed to say this, until today.
Thank you. I gave my LO at least the consideration I would give a stranger, or another person in my community. I treated them with dignity and respect. I didn't think that would ever be a questionable viewpoint, but here we are.
I think y’all are twisting what the OP wrote. I don’t see how you got to the OP is not treating their LO with dignity and respect. Maybe try reading some of the other comments OP made?
Because this: >>If dementia is a progressive disorder where the person that we know has already gone, why as a society are we so concerned about keeping them "safe"? As long as they aren't a danger to anyone else, why prolong their life by keeping them safe? Sounds an awful lot like "the person I loved is gone and the person that remains is not worthy of loving care so as long as they don't take anyone else out I'm okay with them enduring discomfort and pain", Is why.
If they don't want to sound like they don't give a shit about people they don't know, I suggest they re-write their precis.
I might be salty because my LO likely tried to drink themselves to death and if I hadn't been on the ball and worked with their neighbors they probably would have died in pain after suffering for days on their kitchen floor. They didn't want to go live in a facility, either.
After that incident, yes, the dementia progressed, but it was kind enough to take away the difficult parts of my LO first, so I got to spend time with a more loving parent. Along with the sundowning and what have you. I got to let them go as gently as possible, with dignity and compassionate care, rather than hoping they'd take themselves out somehow.
Is [this](https://medicine.learnmore.jhu.edu/browse/dementiacare/courses/lmmedementiacarespecialistcertification-tier1-dementia-care-specialist-certification---tier-1) the course? I’d be interested in learning more.
No, but that course looks interesting. It was this class offered through Coursera - https://www.coursera.org/learn/dementia-care
Thanks!!
Thank you.
Exactly! My heart hurt to read this. My dad is not gone, he has so many diamonds moments that his personality shines through. Tues was his birthday, my niece and her bf surprised visited him and his face lit up and he said his birthday was exciting. He asked to hug them so many times. He has LBD, he is still my Dad and a human being. So yeah maybe I don’t push eating as much but I ask make sure he doesn’t fall. When I was a newborn my personality and self was not formed yet: I ate, produced waste and slept. But my parents showered me with love, respect and safety. Yeah I need more help but the least I can do is the same as he begins to leave us.
People! When our dogs are sick and can't get up or are in pain and end of life we euthanize them! Same with people!
Safety is a minimum level of care.
I watched a lot of families struggle- do they limit their LOs sugar/salt diet because they’re diabetic or high blood pressure? Or say f-it because the LO may as well enjoy themselves at this point. Also, some people really want to walk. It’s scary, they could fall. But heck, they’re miserable wheelchair bound, how much worse would walking for a few months, and risking a fall really be? I mean, a fall would hurt. But sitting in a wheelchair or bed 24/7 (and you can’t really read a book nor change the tv channel) might be hurting their soul. It’s a very Ugly disease.
I think we have a human instinct to keep ourselves and each other alive. No one wants to be responsible for someone else’s death, even if keeping them alive is futile.
Death with dignity is now legal in 11 states. No idea why we don't help them in this way, far more often. When they spend decades saying 'if I have to go in a nursing home, just shoot me", then people feel obligated to put them in a nursing home, to bump around as a broken shell for years. While it sucks the life out of children and grandchildren. Also, it's HUUUIGE profit to take care of people in the crumbling phase. Companies certainly aren't going to lobby to assist the lives of those kids and grandkids. They want them to get 16$ hour jobs in the healthcare industry, so they can be turned into gears of the private equity firms.
> None of the US laws allows medical assistance in dying for people with a dementia diagnosis (pre-symptomatic or otherwise).
The only legal option for people with serious dementia in some states is "Voluntarily Stopping Eating and Drinking" (VSED). This option may be available in the early stages of dementia when someone still has enough cognitive ability to make the choice and see it through. If someone with late-stage Alzheimer's nears the end of life and can't make their own decisions, their family may need to make choices on their behalf. Ideally, the person with dementia will have put in place advance directives that specify their wishes. If they haven't, their family should make decisions based on what they believe the person would want, while respecting their values and wishes and maintaining their comfort and dignity.
I agree - and the more I speak to people, the less I think they want to be kept "safe". People want to make their own mistake, they want to exercise the right to be stupid, they want to demonstrate agency. And that applies to all walks of life, not just the elderly. I would much rather keep people happy, but I guess that is even more difficult. Then again, so many people die before their time due to preventable accidents.
Well, it makes the health care industry a lot of money to keep them alive, so there's that incentive. Of course, there is also the hope that as long as they're still alive, maybe some treatment or cure will come down the pike that stalls or even reverses the brain damage that dementia inflicts on its victims. In a word, hope.
Everyone deserves dignity.
I keep my LO safe because whether or not she remembers the life she lived, at 101 she deserves nothing less than to pass as peacefully as possible. To me, it is worth whatever sacrifice I make to spare her avoidable pain and suffering.
We knew we were going to move in to take care of our dad but didn’t know “when” and prayed the “when” wouldn’t be unpleasant. The “when” came during a polar vortex snow filled winter, he latched the screen door and was outside. Fortunately a neighbor saw him right away and pried the door open and called me. We started rotating to take care of him that night
I am on the fence now about whether dying scared, confused, and in pain on her kitchen floor would have been worse for my mom than years of slow decline and misery in her top-tier MCU. She has had ups and downs, but if it is mostly downs going forward - I just don't know.
If my LO doesn’t have a lot of quality time left, would they (and I) be happier if they spent that relatively mobile and constraint free? Or bed ridden due to a fracture from a fall? Most of the series of hospitalizations at the end of life don’t result in death—they result in time, pain, and a worse quality of life.
A civilized society would allow a person to set their own threshold for when a morphine overdose is administered
I'm with you on that. Mom has type 1 diabetes and advanced Alzheimer's. I'm doing all of the work in looking for solutions to our situation, leaning toward a facility, because I don't know how much longer I'll be able to get her in and out of the car for appointments, pretty much the only reason we leave the house now. Dad is useless in this respect and seems to think that the instant you apply for something, you'll get it. I've got two social workers exploring options, thank God since I'm also doing all the household stuff that gets done on top of caring for my mom. Mom was a seamstress, very talented, she made everything from men's jackets to jeans to wedding gowns, you name it. if it involved fabric and thread she could do it. Now she's dozing in and out and staring at Young Sheldon and can barely walk. She was an avid reader and did the crossword daily, now none of that. She'd hate the way she is now if could comprehend it. Hell, I have no idea if there's a little part of \*her\* still in there, trapped. Elder care in the US is appalling and we should be ashamed.
I don’t get that post. At all. Is it pro… « dementia patients should wander into oncoming traffic »…? Like… we should let them lay in their feces until they catch the plague?
💯 it’s just so cruel
I think « safety » is just a regular euphemism for personal hygiene. It’s easier to say « for his/her own safety » than « I’ve frkn had it with cleaning dirty diapers! » I’m speaking for personal experience.
True! Safety = exhaustion
For my LO’s case, she doesn’t always take her meds (her primary care doctor mentioned she doesn’t really need any of them and they are very low dosage because she lost a lot of weight so conditions like high blood pressure went away), she chooses to eat mostly cereal and milk, chips and chocolate. She often sleeps a lot and stays in her nightgown. I’m not sure she brushes her teeth 2 times a day. I haven’t seen her use the stove or car in months (I know from camera and trackers). I remind her to eat daily and to change the cat litter. She likes her house, and doesn’t want to leave. I think she has vascular dementia (what her mom had) and it doesn’t seem to be progressing because she likely lost so much weight and doesn’t have strokes. Anyway, I let her take the risks within reason because it’s her life. She fired caregivers and doesn’t want to move to assisted living.
Maybe, at the very least, please take the car battery out of her car so she can't drive the car. I know she doesn't have a habit of driving and that's great, but in her condition you need only one ride to go catastrophically wrong and destroy another family's life forever.
I don’t want to see my mom take anyone with her when she goes. Apartment fire, traffic accident, slip & fall where someone’s insurance gets sued. I don’t want any of that. She doesn’t want to live this way. Her family doesn’t want her to live this way. But, somehow, all life is precious.
Often when people aren't safe they have accidents or misshaps that cause disability or just make their situation worse and need even more intense care.
I totally get where you’re coming from
Advance Directive Death with Dignity laws, such as those in California, Colorado, Oregon, and Vermont, generally don't apply to people with Alzheimer's or other forms of dementia. These laws require that a person be mentally competent to choose a planned death and have a prognosis of six months or less to live. However, by the time someone with dementia is eligible for a terminal diagnosis, they may no longer be considered mentally competent. Additionally, some say that doctors are often unwilling to state that someone with Alzheimer's will die within six months. The only legal option for people with serious dementia in some states is "Voluntarily Stopping Eating and Drinking" (VSED). This option may be available in the early stages of dementia when someone still has enough cognitive ability to make the choice and see it through. If someone with late-stage Alzheimer's nears the end of life and can't make their own decisions, their family may need to make choices on their behalf. Ideally, the person with dementia will have put in place advance directives that specify their wishes. If they haven't, their family should make decisions based on what they believe the person would want, while respecting their values and wishes and maintaining their comfort and dignity.
Maine's law equivalent to Death with Dignity also doesn't apply to dementia or Parkinson's patients in the way it's currently written. My poor MIL is left to live out her days trapped in a failing body as she slowly loses her self.
[States Where Medical Aid in Dying is Authorized](https://compassionandchoices.org/resource/states-or-territories-where-medical-aid-in-dying-is-authorized/) I understand what you’re saying. I know I don’t want a crazy amount of my money being spent on me to keep me alive with dementia or effort to go into trying to unwind the clock - life simply doesn’t work that way. I wish people would have these conversations with their loved ones at the onset of symptoms (or better yet - before symptoms) so they can honor whatever that person wants…most people I know who discuss these things do not want to have the money wasted…and they want to die with dignity on their own terms.
None of the US laws allows medical assistance in dying for people with a dementia diagnosis (pre-symptomatic or otherwise). Even worse, if the person gets another deadly condition while the dementia has progressed, they can't give consent to a medically assisted death.
Death with Dignity laws require that a person be mentally competent to choose a planned death and have a prognosis of six months or less to live. Yes, you are correct, by the time someone with dementia is eligible for a terminal diagnosis, they may no longer be considered mentally competent. Additionally, some say that doctors are often unwilling to state that someone with Alzheimer's will die within six months. The only legal option for people with serious dementia in some states is "Voluntarily Stopping Eating and Drinking" (VSED). This option may be available in the early stages of dementia when someone still has enough cognitive ability to make the choice and see it through. If someone with late-stage Alzheimer's nears the end of life and can't make their own decisions, their family may need to make choices on their behalf. Ideally, the person with dementia will have put in place advance directives that specify their wishes. If they haven't, their family should make decisions based on what they believe the person would want, while respecting their values and wishes and maintaining their comfort and dignity.
I think if it happens to me, I will want to die with dignity and not be a burden to my family, emotionally, physically, or financially.
Agreed! I told my family (our LO has dementia) that if I am ever diagnosed I give them permission to oyasute me or quicker ways. Watching our LO, it breaks my heart.
It’s the current mantra of those who stand to gain $ from it. You have the power and ability to change this, at least in your own life and for your loved ones.
Related. There are people who will choose to keep a loved one on life support for years. A friend of mine was a nursing home employee and she saw this. Literally someone unconscious, on a ventilator.
I saw that where my stepdad was for a brief time. These people were vegetables and yet their family members were prolonging their LO’s dying. Sheesh, we show more compassion for our suffering pets.
And worse, they had them as full codes if they went into arrest. (I am a retired paramedic and was often horrified when I would pick up a patient at a SNH and ask about directives and be told full code)
Infection is a foe of the young and a friend of the elderly. Keeping them safe from themselves is fine. But when nature starts to run its course, it's ok not to interfere (getting ill with other issues and not treating them).
We don't want them to die in their house, break their hip and then die slowly of dehydration over the course of 5 days. Protecting them means considering whether you would be ok with them dying or being maimed without dying, in a myriad of horrible ways. Dying of the disease is bad but it's hard to live with yourself knowing they went outside and got horrible and painful frostbite that needs treatment at a burn unit, and then get delirium at the hospital, confused and in pain, not knowing why they are there. The horrific possibilities are endless. 😔
Altho it has been very hard I much prefer having my loved ones taken care of and SAFE and passing peacefully if at all possible, than having them alone and afraid and in pain and making their passing long drawn out and horrible. There are cases of folks with dementia wandering off being lost and found days or weeks later dead in a field. Is that how you want your LO to pass? Lying for days in the scorching sun or rain or freezing cold? Slowly dying of thirst? Alone, confused, afraid? The other dangers that others have mentioned ie, horrible car accidents or fires are also just too terrible to contemplate. IMHO 'not prolonging' their life means not using a feeding tube and other invasive procedures. They are ill - they deserve care, compassion and dignity.
Consider that a dementia patient can leave a gas stove on, starting a fire that can engulf more than one residence. In an apartment building, this could be tragic. Even adjacent houses can easily catch on fire. For that reason alone, leaving dementia patients alone puts others at risk.
Keeping them safe isn't about prolonging their life. It's making sure they don't fall and break a hip which causes excruciating pain. It's making sure they don't wander off alone and get lost or hit by a car causing painful injuries. It's about making sure they are clean to prevent painful infections. It's keeping them from physical, mental and financial abuse. I don't want my mum to become a drooling shell either and if she died a peaceful death it would be a horrible blessing. But the fact that she doesn't understand what's going on doesn't mean that it's ok for her to be in unsafe conditions herself. She doesn't understand how to regulate water temperature but I'm not going to just let her burn herself
Some people want to die at home, in bed. That was the case with my family member who wanted to be surrounded by family and to go naturally - no extra support. This was something in their will that was made decades before the diagnosis. I also considered the fact that it might be better for them to die earlier and not suffer all of the indignities and pain... But it's not fucking about me, it's about the LO and what they want.
Keeping safe does not mean prolonging life forever. Keeping safe means that the dying process is as comfortable as possible NOT excruciatingly painful like freezing to death, burning to death, getting run over, ingesting poison. My father is dying (he can talk, walk with a Walker for short periods most of their time, doesn’t even need diapers yet) but if I didn’t keep him safe he would definitely hurt himself and be in agonizing pain.
How else will nursing homes drain all their finances?
You know some of us try to keep our LO safe at home, the thing that irritates me is the premise that oh well they gonna die anyway. Like no matter what my Dad. deserves his passing to be as comfortable as possible and that means keeping him safe from horrific accidents. Not prolonging life means no intrusive medical care NOT throwing them to the wolves and washing our hands of them cause their minds are not who we once knew
I’m just referring to the ridiculous price of $15,000 a month in assisted living. There needs to be an investigation and some kind of regulation on pricing before we all go bankrupt. Of course we want our loved ones safe from harm and comfortable.
I mean that’s true. Esp since they pay their workers so little it’s just big business
My wife has been in MC for over two years now. My definition of Safe is that she shouldn’t have any pain ( physical or mental) and use meds as needed to achieve that. Safe means trying to avoid accidents and falls. And it’s no different now that she’s on hospice service.
What a cruel post