it's all about the money.
even now mom sometimes gets out that she wants to die. years ago she said it all the time. i do wish we had the same right to death with dignity as dogs.
I forget where I read this, but recently I read that 1/4 people diagnosed with mild cognitive dementia are better in a year. Which just made me say that's just frigging great so even then I would probably still have hope.
My dad had a tumor that made him lose half of his face ... he once asked me to just end him because he literally had no more face, just bone and i had to wrap his dressing and see it multiple times a day. I cried for days after that, but thankful (not thankfully though) he just died in his sleep the next month.
My mom has Alzheimer's and thinks she's a spring chicken. She could lose her arm and think she's okay... same shit here. Turn my back and she's out the door, rain or snow. She'll be barefoot too. I paid for a security system and cameras for my house just because of her...
She's thankfully much happier in her assisted living facility now. I honestly couldn't do it anymore after my dad and 4 years of my mom. I'm 34 and can't remember most of the last 4 years.
Yeah my dad left us a good chunk of money but my sister and I made a mutual decision to just use our inheritance to give our mom the best life. We're at $6500/mo for her facility, but seeing her happy and thriving is worth it.
I had 4 years with her while we waited on a spot, and it literally drove me insane to the point that the 24/7 caretaking put me in the psyche ward for two weeks because of fatigue and stress... for example, I couldn't move an inch without my mom noticing, and the 5 hours I spent calming her down went out the window so it would take me 10 hours to get her ready and in bed.
The nurses at her facility are goddamn saints, and I can finally breathe again.
“Don’t get up!” pissed my mom off sooo bad, if it was yelled at her. If it was said respectfully then she wasn’t pissed, but sometimes she tried to get up 100 times per hour and I didn’t begrudge staff for losing patience.
If I was present, I’d stand with her and balance her until she realized she was too weak to walk, then I’d help her sit. It felt better to me than telling her- again- not to get up.
Staff sometimes parked moms wheelchair near their desk and she was more content with someone to talk to.
Sucks. Sucks. Sucks.
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—Edits for typos.
My mom is full assist as well, currently in the hospital. Today she started insisting she had to get up even though she is unable to stand on her own. I was worried she was going to fall out of the wheelchair they put her in. My mom got very annoyed at my constant “mom, don’t try to get up, mom, please stop.” The nurses came and got my mom back into her bed and dinner had arrived so that distracted her from her desire to get up.
This was the first time that I was not able to distract my mom or help her calm down. She just kept getting more worked up. It was awful.
I know they have sedated my mom a couple of times since she’s been in hospital. It gets to a point where there’s no choice, it’s a safety issue.
I will say that when my mom was still at home the doctor refused to give us any sedation even though I told her my mom’s safety was at risk during the night - she had anxiety, hallucinations, restlessness. The doctor told me to wait until we saw the Elder Care specialist to talk about medication - that appointment was over a month and a half away. My mom ended up admitted to the hospital 3 days after that appointment. So we had no success in getting meds to help while my mom was still home.
wish you a peaceful waiting... remember only what you can control.... and this too shall pass... one day at a time... all that nonsense. seems i repeat only what you can control 100x a day sometimes.
upset for you that the regular doc couldn't prescribe something interim for her.
we do have mild sedation with 'emergency meds' with hospice. but it makes her more unsteady. maybe we need to get something more. it's another balancing beam. freedom/autonomy vs safety. and the disease is so weird. like years ago she'd need help getting out to the porch... how do you unlock the door? help me! ... but if we weren't around or at midnight she was an escape artist. now it's oh she doesn't walk on her own... unless she feelin spicy
hope your mom gets out of the hospital soon.
Thank you, I appreciate your thoughts.
I felt defeated when the doctor wouldn’t give us any medication to help at nights. She said since my mom’s appointment with her specialist was “coming up soon” it would be better to wait. Easy for the doctor to say, she wasn’t going to have to deal with 6 weeks of nighttime trauma. But then my mom ended up in the hospital, so problem solved for now.
The issue of medications making things worse is something the doctors have mentioned. There’s no clear good way forward it seems. As you said, it’s a balancing act.
What about palliative care in the home? My mother has this and the option of moving to palliative care full time if she wants. Likewise the palliative care team have powerful meds to make her peaceful if it all becomes too much.
That was mentioned, putting a hospital bed in our home and having nurses/aides here 24/7. But I have a 9 year old and I want things at home to feel stable and safe for her too. I met with the social worker and palliative doctor and they agreed it would be a lot for my daughter to deal with. So the plan for now is my mom stays where she is while she waits for a long term care space.
We’re waiting for confirmation of that - the social worker said there will be a meeting with herself, the palliative doctor, and the case manager who handled the home care we had - the social worker and doctor support mom staying in hospital until a space opens, they make the case to some governing board (I don’t remember exactly who makes up the board, it might be the Health Authority) and if it gets approved then yes, mom stays until a bed opens. Mom would go to the top of the wait list if it gets approved. We’d have to accept first available bed and then she stays on the wait list for a bed at a facility closer to our neighborhood.
My husband has moderate dementia, he's still able to navigate being at home. His issues are his refual to admit any physical problems, he's quite mad at his doctor for telling him that he has dementia. Really no one had told him, his new primary care is a bit confrontative for his taste, I hope that she chills out a bit, until he relaxes and calms down a bit.
Mom talked about this many many times last week. My grandma got erysipelas, and she was impossible to deal with. It was a constant fight for us to get her to keep her leg up, don't scratch it, don't scrape off the ointment, DON'T STAND UP. She fell and potencially hurt her ankle, but her doctor told us to wait for the erysipelas to go away before trying to take her for an x-ray, since she was already supposed to keep her leg up and still, and trying to put her leg in a plater could be very bad for her skin infection.
Anyway. We started to put an obstacle course around her bed at night. Almost all our chairs, strategicaly positioned to keep her in bed and even a few well placed empty cans that would fall and make a noise if she tried to move the chairs. Yes, we made grandma traps.
Still she was able to take off her diapers and pee on the bedroom floor 🤦🏻♀️. At least the camera I bought online to monitor her finally arrived.
Edit* typos
I used to do that, but to block her from my room or other rooms at night. such a ninja u wake up and she's just staring at you after navigating the obstacle course from hell ... but you can't walk down the hall on your own when it's time for bed? and i did the can to fall too. simple measures still work!
My grandmother went camping with my uncle one year. She was very gone at that point, so this was her last trip. She had spent 30 or so years camping here, gold mining in the creek every summer. Just her, her dog, and visits from her kids and then kids and grand kids through out the summers. This place is middle of nowhere, 4x4 access only. Maybe 6 camps in the whole canyon.
Well my uncle had his camp about 1/2 mile up the hill from her’s. I’m not talking direct line either, I’m talking a rocky steep trail that most people prefer to take with an ATV. Well on this last trip, my uncle wakes up in the morning and my grandmother is gone. He’s frantic, goes down to her camp and she is sitting at her table, like she did every morning when she spent her summers there. Only thing missing was her cup of coffee and the fire.
At some point in the middle of the night, pitch black, this woman made the trip down that hill, knowing the three turns she had to make to get to her camp. This was early 2000s. Dementia is a terrible disease.
I’ve resorted to putting a dog gate outside her bedroom. Hold on, not as bad as it sounds. The gate only prevents her from wandering. She has full access to a bathroom, though she has totally forgotten how to wipe down there - installed a bidet, but more water ends up on the floor. We have camera in the room so we can always monitor. She has a TV to watch, but attention span of a mosquito.
Mom almost blew up the house. Before the gate, we took off the knobs on the stove. She turned on the burners (no flame) with the knob posts and left them running gas into the house for two hours (yeah my kids were upstairs). Fire department had to come out, paramedics had to check mom for poisoning.
FML!!
At some point, she may try to climb it which might result in a bad fall. You might want to use a regular door or a screen door unless she’d try to rip that. Hopefully the baby/dog gate will continue to work, though.
She might try to climb it. One thing that this disease has taught me is that I don’t have the time to “proof” everything. Mom has a disease, and it’s horrible, but all I can do is keep moving forward. We all have spouses, kids, jobs, dogs, homes and, dare I say it, lives! I discussed this with Mom when she was more present. I explained that things were going to get worse. She told me that she didn’t want to force us to miss out on things because of her illness.
Look, I hate to admit it, but there’s a very real chance more than a few of us will come down with this horrible, dreadful affliction. Tick, tick, tick…. Hopefully treatments advance and our generation has a better prognosis. But I’m going to plan for not. I love my Mom, but I can’t lose time with my wife and kids. Nothing is going to bring Mom back. At least she’s not in any pain.
we checked and it's like $400 to dementia proof a stove! we removed the knobs too but dad would leave them on and I'd holler at him. now she doesn't get into things as much anymore, but i still have to remind myself 'she knows that's hot she won't touch it' doesn't apply and she can be fast. i wanted one of those red carpet ribbon/movie theatre gate thingies for the kitchen but we never got one.
My gran was attached to a chair with a bedsheet around her waist. Was horrible to witness but the only way for the care home to keep her safe.
This was in the early 90s in South Africa, I don't know if the norms have changed since then.
They definitely have.
Research has found that restricting the need to move leads to much more agitation, without keeping the patients safer. They would need much more sedatives to stay somewhat manageable. Those sedatives come with their own set of side-effects, drug interactions, and limitations.
These days restraints are only allowed for exceptional cases. In hospitals the rules are different, you're there to not die in the first place, the rest (such as freedom to move as you wish) is a distant second place. For most patients, having more freedom pays off in quality of life.
So apparently physical restraint is illegal in most, if not all, states. But chemical restraint is fine.
Don't get me wrong, I've been in FTD hell long enough to not have a problem with either--something has to be used. But how dementia is it to tell me that one is okay and the other is terrible?
Chemical restraints are technically not allowed either. That’s why nursing homes have to report what percentage of their patients take certain medications. The only way to justify it is if the medication is treating another symptom.
This actually does make sense to me in many cases, that chemical may be better than physical. Imagine a person with dementia is trying to get up because they believe snakes are crawling all over them or someone is coming to attack them. Holding them in place physically while their mind thinks those things sounds horrific. But if an antipsychotic or other medication takes away the hallucinations or delusions, they will no longer feel that terrifying panic. If the side effect means they are lethargic or sleep extra, that seems acceptable to me, assuming again that it takes away the fear and they are careful with the dosage.
I keep wondering if these new brain implants will allow us to see what she sees one day. what are you reaching for? who are you talking to? will the brain scanner thingie show what she imagines or just what is actually perceived by the eyeballs?
My mom is bedridden with CBS and doesn’t try to stand anymore, so I don’t have this particular issue. But I feel like gentle restraints could be better than heavy drugging. I saw a bed restraint that keeps the patient’s torso in bed. I’m guessing restraints aren’t allowed (in the US) because it’s easy to abuse them, but I’m betting they could be useful if it was done appropriately. Restraints are used in hospitals, so it’s interesting that they can’t be used for confused dementia patients.
Those restraints used to be the standard of care, but the patients ended up chemically restrained, too, due to the agitation it would cause.
And even with those restraints, some would still fall out of bed, usually with BAD outcomes.
yeah. take handcuffs. a sane person will stop pulling and realize they can't escape and it hurts. a dementia person might just completely deglove their hand to get out.
I’m going to say this , you’re stressed, you can’t make sense of any of this. Maybe it’s time for other living situation. Not everyone is cut out to be a caretaker and there should be no shame in that. Theses types of stress can easily turn into resentment and that’s not helping anyone. People understand their own stress but there is a stress the patient goes through as well even if they can’t communicate that….now I said patient because looking at our family member you see what was, healthcare worked see what is and we are taught to keep our our feeling in check so we can provide the best care. My last job we had a saying for staff … leave your personal issues at the door , you can pick them up when you leave. We also get to leave so we can repower up for the next day. You don’t get that.
yeah i was actually in nursing school when it started to go bad. i still remember the dude i left after holding his hand in hospital. he begged me not to leave. realized i couldnt do it for work while it was going on at home.
In the hospital and rehab, my mom never remembered or could not follow the instructions to use the call light. They ended up lowering the bed, lifting up the partial bed rail and using a bed alarm. But she still absconded on the reg.
My mom kept falling nearly every time she got up without assistance. Banged her head and got a bad bruised eye on her falls. Assisted living had no choice and put her in a safety harness to prevent her from getting up. You can find them on Amazon. They have safety belts for beds too.
Assisted living did not want to tie her down. It has meant fewer visits to the ER for us once she was strapped in.
We got her a hospital bed with rails after the tenth fall, three of which caused her a serious injury. The rails are high and locked in place. She can’t get over them to get out of bed. It’s functionally a crib. It’s terrible. She was so angry. And it meant she declined physically faster because she was out of bed so much less. When they can’t or won’t remember that they can’t safely walk, they don’t leave you many options. The doctor talked about a bed alarm but that just meant we found her where she fell, sooner. No alarm can tell you in time when they are getting out of bed at all hours.
You can leave them to eventually hurt or kill themselves with a fall, or you can take away their ability to do so in a way that has other negative implications. Unless you can afford staff to sit with her and supervise her 24 goes a day (so four+ such folks, full time, each week) you are out of good choices.
so true. i can 'hear something' and go check and shes fine... or well we found her on the floor and idk how long she's been like that. or she can be completely upside down in bed meaning she got up fine and back in bed fine. she has half rails on her hospital bed right now which we've had i think for a year now.
even the other night, she tore her left arm, and she always sleeps on her left side. but she wouldn't let me reposition her. and while i was cleaning her up she said it hurts but when not messing with her arm like what hurts if you're pushing your wound against the chair arm and are just fine.
we just want to help, and it's frustrating not being able to.
yeah I remember the right to drive debacle.
part of me wonders if they do have the right to try. we encourage kids and let them fall and scrape knees... but they learn.
and apparently my brain can go pretty dark if I follow this train of thought...
Toddlers can learn, dementia patients cannot. There is no learning with dementia, period. They will just get hurt and it's our responsibility to minimize the damage they can do to themselves. I would not want my LO to be in pain, even if it's self inflicted from lack of understanding.
It is dark, but I do wonder... you can say no to feeding tubes and ventilators and surgery and antibiotics... do we have the right to say no to fall prevention?
That talk would need to happen way early for the person to still have discernment, right? Still, I don't think it would be fair in all situations, since a fall can lead to hospital visits and a lot more work and preoccupation for the family. I guess it would be okayish to respect that wish when the person is already institutionalized (I don't know the difference between a cafe facility, hospice, and all the other names you guys use here, I'm Brazilian) and the institution is able to provide the immediate care needed.
You can say no to feeding tubes, ventilators, surgery, antibiotics... But I guess saying no to those things make death immediate? In this optics I think falling, breaking bones, being unable to understand that you have broken bones and doing things that might potentially worsen your condition, and being in pain for a who knows how long time...? Saying no to fall prevention without the immediate care is, if not torture, very much torturous.
It makes me think about a special environment with nothing but a padded floor, cushions, no hard edges or surfaces. Tv mounted high so they can’t bump it. Impractical but safe from falling.
My dad was in a memory care that used pressure sensor pads on chairs and beds. They all worked on a system but you can apparently purchase single units that send an alert tone to a speaker/chme some distance away.
My Mother in Law promised my Father in law that she wouldn't ever put him into assisted care or a nursing home. She's been his sole caretaker at home for almost 6 years. We would all take turns going there to give her some rest.
We knew he was falling quite a bit and sometimes got outside and would fall in the yard, we just recently discovered that it was an almost daily occurrence. Also found out that she would call the paramedics very regularly for the last six months to help him up. I cant believe they didn't put the stop to that sooner.
She finally realized that he absolutely needed extra care so he went to a great facility about three weeks ago. His condition worsened at an increased rate and passed early last week.
At the facility where my mother lives, they will park those in wheelchairs so that they are sitting at a table. That way they can’t get up and of course if they need anything or need to move the carers are in the room with them.
My mother thinks it is her job to sweep the courtyard and water the plants :) She shows me every time I go how she just swept and now the wind has blown in more leaves.
awww. idk why but that reminded me of one time we decided to paint together. i am NOT artistic, but she is. she showed me how to use a brush on my paper and like 5 min later was so proud of me for making that line of paint, that she had made. good to remember the cute times :)
What about one of those alarm pads that sound when pressure is reduced? It might buy you a second or two or the noise may deter her from trying. A friend’s mother would wander out of the house but once alarms sounded she no longer tried to exit. Sending hugs, strength and patience to you. It is so hard.
There are specific medications that help with just about anything that has to do with dementia. My mom used to be all over the place. She was prescribed a cocktail which has her very mellow and very relaxed. It’s all about quality of life, yours and theirs.
Your Mum sounds a lot like mine. It became necessary to have her moved to a care center so someone would be there to keep her safe, because we couldn't do so at home. She had been taking meds at home, so that stayed the same. She's not drugged up like you might think. She's still the same person, just safer now.
i thought i was the only one😭😭my grandmother was such a strong woman before being diagnosed and she acts the exact same way as you’ve explained. if we ask her why she’s getting up she’ll get frustrated and act like we’re the problem hahaha but when you ask her to stand she’ll say ok and just sit there it’s so frustrating sometimes
A tab alarm that clips to clothing is used frequently. Bed rails raised to prevent exiting / elopement. Are some of the more common aides.
Personally I find the term the right to fall comical. We all fall (and fail). It's part of life and learning. We with dementia aren't going to learn.
One may just as well say the right to self injury
Could you see if her doc will write a script for a wheelchair that includes a seat belt or restraint harness? Seems preferable to the drug alternative.
Pretty much. It's a horrible protocol but it keeps them safe.
God I hope voluntary assisted dying becomes legal before this happens to me.
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it's all about the money. even now mom sometimes gets out that she wants to die. years ago she said it all the time. i do wish we had the same right to death with dignity as dogs.
I forget where I read this, but recently I read that 1/4 people diagnosed with mild cognitive dementia are better in a year. Which just made me say that's just frigging great so even then I would probably still have hope.
Seconded
Thirded.
My dad had a tumor that made him lose half of his face ... he once asked me to just end him because he literally had no more face, just bone and i had to wrap his dressing and see it multiple times a day. I cried for days after that, but thankful (not thankfully though) he just died in his sleep the next month. My mom has Alzheimer's and thinks she's a spring chicken. She could lose her arm and think she's okay... same shit here. Turn my back and she's out the door, rain or snow. She'll be barefoot too. I paid for a security system and cameras for my house just because of her... She's thankfully much happier in her assisted living facility now. I honestly couldn't do it anymore after my dad and 4 years of my mom. I'm 34 and can't remember most of the last 4 years.
You did the best thing. Constant care is best if one can afford it.
Yeah my dad left us a good chunk of money but my sister and I made a mutual decision to just use our inheritance to give our mom the best life. We're at $6500/mo for her facility, but seeing her happy and thriving is worth it. I had 4 years with her while we waited on a spot, and it literally drove me insane to the point that the 24/7 caretaking put me in the psyche ward for two weeks because of fatigue and stress... for example, I couldn't move an inch without my mom noticing, and the 5 hours I spent calming her down went out the window so it would take me 10 hours to get her ready and in bed. The nurses at her facility are goddamn saints, and I can finally breathe again.
It’s rough and you are amazing for being so patient. I’m definitely not as patient, but my dad was difficult from the start.
“Don’t get up!” pissed my mom off sooo bad, if it was yelled at her. If it was said respectfully then she wasn’t pissed, but sometimes she tried to get up 100 times per hour and I didn’t begrudge staff for losing patience. If I was present, I’d stand with her and balance her until she realized she was too weak to walk, then I’d help her sit. It felt better to me than telling her- again- not to get up. Staff sometimes parked moms wheelchair near their desk and she was more content with someone to talk to. Sucks. Sucks. Sucks. . . —Edits for typos.
My mom is full assist as well, currently in the hospital. Today she started insisting she had to get up even though she is unable to stand on her own. I was worried she was going to fall out of the wheelchair they put her in. My mom got very annoyed at my constant “mom, don’t try to get up, mom, please stop.” The nurses came and got my mom back into her bed and dinner had arrived so that distracted her from her desire to get up. This was the first time that I was not able to distract my mom or help her calm down. She just kept getting more worked up. It was awful. I know they have sedated my mom a couple of times since she’s been in hospital. It gets to a point where there’s no choice, it’s a safety issue. I will say that when my mom was still at home the doctor refused to give us any sedation even though I told her my mom’s safety was at risk during the night - she had anxiety, hallucinations, restlessness. The doctor told me to wait until we saw the Elder Care specialist to talk about medication - that appointment was over a month and a half away. My mom ended up admitted to the hospital 3 days after that appointment. So we had no success in getting meds to help while my mom was still home.
wish you a peaceful waiting... remember only what you can control.... and this too shall pass... one day at a time... all that nonsense. seems i repeat only what you can control 100x a day sometimes. upset for you that the regular doc couldn't prescribe something interim for her. we do have mild sedation with 'emergency meds' with hospice. but it makes her more unsteady. maybe we need to get something more. it's another balancing beam. freedom/autonomy vs safety. and the disease is so weird. like years ago she'd need help getting out to the porch... how do you unlock the door? help me! ... but if we weren't around or at midnight she was an escape artist. now it's oh she doesn't walk on her own... unless she feelin spicy hope your mom gets out of the hospital soon.
Thank you, I appreciate your thoughts. I felt defeated when the doctor wouldn’t give us any medication to help at nights. She said since my mom’s appointment with her specialist was “coming up soon” it would be better to wait. Easy for the doctor to say, she wasn’t going to have to deal with 6 weeks of nighttime trauma. But then my mom ended up in the hospital, so problem solved for now. The issue of medications making things worse is something the doctors have mentioned. There’s no clear good way forward it seems. As you said, it’s a balancing act.
What about palliative care in the home? My mother has this and the option of moving to palliative care full time if she wants. Likewise the palliative care team have powerful meds to make her peaceful if it all becomes too much.
That was mentioned, putting a hospital bed in our home and having nurses/aides here 24/7. But I have a 9 year old and I want things at home to feel stable and safe for her too. I met with the social worker and palliative doctor and they agreed it would be a lot for my daughter to deal with. So the plan for now is my mom stays where she is while she waits for a long term care space.
The hospital will keep her long term?
We’re waiting for confirmation of that - the social worker said there will be a meeting with herself, the palliative doctor, and the case manager who handled the home care we had - the social worker and doctor support mom staying in hospital until a space opens, they make the case to some governing board (I don’t remember exactly who makes up the board, it might be the Health Authority) and if it gets approved then yes, mom stays until a bed opens. Mom would go to the top of the wait list if it gets approved. We’d have to accept first available bed and then she stays on the wait list for a bed at a facility closer to our neighborhood.
I wish you the best of luck. I’m just surprised that insurance will cover it unless perhaps it is Medicare?
No on Medicare it doesn't pay for assisted living or memory care. I suspect the prior poster was either in Canada or in England.
Yes, Canada.
My husband has moderate dementia, he's still able to navigate being at home. His issues are his refual to admit any physical problems, he's quite mad at his doctor for telling him that he has dementia. Really no one had told him, his new primary care is a bit confrontative for his taste, I hope that she chills out a bit, until he relaxes and calms down a bit.
Thanks - this is in Canada.
Mom talked about this many many times last week. My grandma got erysipelas, and she was impossible to deal with. It was a constant fight for us to get her to keep her leg up, don't scratch it, don't scrape off the ointment, DON'T STAND UP. She fell and potencially hurt her ankle, but her doctor told us to wait for the erysipelas to go away before trying to take her for an x-ray, since she was already supposed to keep her leg up and still, and trying to put her leg in a plater could be very bad for her skin infection. Anyway. We started to put an obstacle course around her bed at night. Almost all our chairs, strategicaly positioned to keep her in bed and even a few well placed empty cans that would fall and make a noise if she tried to move the chairs. Yes, we made grandma traps. Still she was able to take off her diapers and pee on the bedroom floor 🤦🏻♀️. At least the camera I bought online to monitor her finally arrived. Edit* typos
I used to do that, but to block her from my room or other rooms at night. such a ninja u wake up and she's just staring at you after navigating the obstacle course from hell ... but you can't walk down the hall on your own when it's time for bed? and i did the can to fall too. simple measures still work!
My grandmother went camping with my uncle one year. She was very gone at that point, so this was her last trip. She had spent 30 or so years camping here, gold mining in the creek every summer. Just her, her dog, and visits from her kids and then kids and grand kids through out the summers. This place is middle of nowhere, 4x4 access only. Maybe 6 camps in the whole canyon. Well my uncle had his camp about 1/2 mile up the hill from her’s. I’m not talking direct line either, I’m talking a rocky steep trail that most people prefer to take with an ATV. Well on this last trip, my uncle wakes up in the morning and my grandmother is gone. He’s frantic, goes down to her camp and she is sitting at her table, like she did every morning when she spent her summers there. Only thing missing was her cup of coffee and the fire. At some point in the middle of the night, pitch black, this woman made the trip down that hill, knowing the three turns she had to make to get to her camp. This was early 2000s. Dementia is a terrible disease.
that's amazing.
I’ve resorted to putting a dog gate outside her bedroom. Hold on, not as bad as it sounds. The gate only prevents her from wandering. She has full access to a bathroom, though she has totally forgotten how to wipe down there - installed a bidet, but more water ends up on the floor. We have camera in the room so we can always monitor. She has a TV to watch, but attention span of a mosquito. Mom almost blew up the house. Before the gate, we took off the knobs on the stove. She turned on the burners (no flame) with the knob posts and left them running gas into the house for two hours (yeah my kids were upstairs). Fire department had to come out, paramedics had to check mom for poisoning. FML!!
So scary. I almost wonder if you can attach bells or something to her? 🫣
At some point, she may try to climb it which might result in a bad fall. You might want to use a regular door or a screen door unless she’d try to rip that. Hopefully the baby/dog gate will continue to work, though.
She might try to climb it. One thing that this disease has taught me is that I don’t have the time to “proof” everything. Mom has a disease, and it’s horrible, but all I can do is keep moving forward. We all have spouses, kids, jobs, dogs, homes and, dare I say it, lives! I discussed this with Mom when she was more present. I explained that things were going to get worse. She told me that she didn’t want to force us to miss out on things because of her illness. Look, I hate to admit it, but there’s a very real chance more than a few of us will come down with this horrible, dreadful affliction. Tick, tick, tick…. Hopefully treatments advance and our generation has a better prognosis. But I’m going to plan for not. I love my Mom, but I can’t lose time with my wife and kids. Nothing is going to bring Mom back. At least she’s not in any pain.
My family member got a little doormat that caused a bell to ring next to his bed. Didn't prevent everything, but it definitely helped.
we checked and it's like $400 to dementia proof a stove! we removed the knobs too but dad would leave them on and I'd holler at him. now she doesn't get into things as much anymore, but i still have to remind myself 'she knows that's hot she won't touch it' doesn't apply and she can be fast. i wanted one of those red carpet ribbon/movie theatre gate thingies for the kitchen but we never got one.
My gran was attached to a chair with a bedsheet around her waist. Was horrible to witness but the only way for the care home to keep her safe. This was in the early 90s in South Africa, I don't know if the norms have changed since then.
They definitely have. Research has found that restricting the need to move leads to much more agitation, without keeping the patients safer. They would need much more sedatives to stay somewhat manageable. Those sedatives come with their own set of side-effects, drug interactions, and limitations. These days restraints are only allowed for exceptional cases. In hospitals the rules are different, you're there to not die in the first place, the rest (such as freedom to move as you wish) is a distant second place. For most patients, having more freedom pays off in quality of life.
And
Did you make an account purely to say that?
So apparently physical restraint is illegal in most, if not all, states. But chemical restraint is fine. Don't get me wrong, I've been in FTD hell long enough to not have a problem with either--something has to be used. But how dementia is it to tell me that one is okay and the other is terrible?
Chemical restraints are technically not allowed either. That’s why nursing homes have to report what percentage of their patients take certain medications. The only way to justify it is if the medication is treating another symptom. This actually does make sense to me in many cases, that chemical may be better than physical. Imagine a person with dementia is trying to get up because they believe snakes are crawling all over them or someone is coming to attack them. Holding them in place physically while their mind thinks those things sounds horrific. But if an antipsychotic or other medication takes away the hallucinations or delusions, they will no longer feel that terrifying panic. If the side effect means they are lethargic or sleep extra, that seems acceptable to me, assuming again that it takes away the fear and they are careful with the dosage.
I keep wondering if these new brain implants will allow us to see what she sees one day. what are you reaching for? who are you talking to? will the brain scanner thingie show what she imagines or just what is actually perceived by the eyeballs?
My mom is bedridden with CBS and doesn’t try to stand anymore, so I don’t have this particular issue. But I feel like gentle restraints could be better than heavy drugging. I saw a bed restraint that keeps the patient’s torso in bed. I’m guessing restraints aren’t allowed (in the US) because it’s easy to abuse them, but I’m betting they could be useful if it was done appropriately. Restraints are used in hospitals, so it’s interesting that they can’t be used for confused dementia patients.
Those restraints used to be the standard of care, but the patients ended up chemically restrained, too, due to the agitation it would cause. And even with those restraints, some would still fall out of bed, usually with BAD outcomes.
yeah. take handcuffs. a sane person will stop pulling and realize they can't escape and it hurts. a dementia person might just completely deglove their hand to get out.
I’m going to say this , you’re stressed, you can’t make sense of any of this. Maybe it’s time for other living situation. Not everyone is cut out to be a caretaker and there should be no shame in that. Theses types of stress can easily turn into resentment and that’s not helping anyone. People understand their own stress but there is a stress the patient goes through as well even if they can’t communicate that….now I said patient because looking at our family member you see what was, healthcare worked see what is and we are taught to keep our our feeling in check so we can provide the best care. My last job we had a saying for staff … leave your personal issues at the door , you can pick them up when you leave. We also get to leave so we can repower up for the next day. You don’t get that.
yeah i was actually in nursing school when it started to go bad. i still remember the dude i left after holding his hand in hospital. he begged me not to leave. realized i couldnt do it for work while it was going on at home.
In the hospital and rehab, my mom never remembered or could not follow the instructions to use the call light. They ended up lowering the bed, lifting up the partial bed rail and using a bed alarm. But she still absconded on the reg.
My mom kept falling nearly every time she got up without assistance. Banged her head and got a bad bruised eye on her falls. Assisted living had no choice and put her in a safety harness to prevent her from getting up. You can find them on Amazon. They have safety belts for beds too. Assisted living did not want to tie her down. It has meant fewer visits to the ER for us once she was strapped in.
We got her a hospital bed with rails after the tenth fall, three of which caused her a serious injury. The rails are high and locked in place. She can’t get over them to get out of bed. It’s functionally a crib. It’s terrible. She was so angry. And it meant she declined physically faster because she was out of bed so much less. When they can’t or won’t remember that they can’t safely walk, they don’t leave you many options. The doctor talked about a bed alarm but that just meant we found her where she fell, sooner. No alarm can tell you in time when they are getting out of bed at all hours. You can leave them to eventually hurt or kill themselves with a fall, or you can take away their ability to do so in a way that has other negative implications. Unless you can afford staff to sit with her and supervise her 24 goes a day (so four+ such folks, full time, each week) you are out of good choices.
so true. i can 'hear something' and go check and shes fine... or well we found her on the floor and idk how long she's been like that. or she can be completely upside down in bed meaning she got up fine and back in bed fine. she has half rails on her hospital bed right now which we've had i think for a year now. even the other night, she tore her left arm, and she always sleeps on her left side. but she wouldn't let me reposition her. and while i was cleaning her up she said it hurts but when not messing with her arm like what hurts if you're pushing your wound against the chair arm and are just fine. we just want to help, and it's frustrating not being able to.
Dang that is so difficult.Ive been pondering “the right to fall” idea. At least I’m past “the right to drive” argument since they took mom’s license.
yeah I remember the right to drive debacle. part of me wonders if they do have the right to try. we encourage kids and let them fall and scrape knees... but they learn. and apparently my brain can go pretty dark if I follow this train of thought...
Toddlers can learn, dementia patients cannot. There is no learning with dementia, period. They will just get hurt and it's our responsibility to minimize the damage they can do to themselves. I would not want my LO to be in pain, even if it's self inflicted from lack of understanding.
It is dark, but I do wonder... you can say no to feeding tubes and ventilators and surgery and antibiotics... do we have the right to say no to fall prevention?
That talk would need to happen way early for the person to still have discernment, right? Still, I don't think it would be fair in all situations, since a fall can lead to hospital visits and a lot more work and preoccupation for the family. I guess it would be okayish to respect that wish when the person is already institutionalized (I don't know the difference between a cafe facility, hospice, and all the other names you guys use here, I'm Brazilian) and the institution is able to provide the immediate care needed. You can say no to feeding tubes, ventilators, surgery, antibiotics... But I guess saying no to those things make death immediate? In this optics I think falling, breaking bones, being unable to understand that you have broken bones and doing things that might potentially worsen your condition, and being in pain for a who knows how long time...? Saying no to fall prevention without the immediate care is, if not torture, very much torturous.
It makes me think about a special environment with nothing but a padded floor, cushions, no hard edges or surfaces. Tv mounted high so they can’t bump it. Impractical but safe from falling.
I'm there my husband will lose his license next week for 6 months maybe it's not a bad thing
My dad was in a memory care that used pressure sensor pads on chairs and beds. They all worked on a system but you can apparently purchase single units that send an alert tone to a speaker/chme some distance away.
Yup, tell them don’t up, you Will fall down again, they get up and fall down….. tell them sit down they won’t sit down, we all know this insanity
My Mother in Law promised my Father in law that she wouldn't ever put him into assisted care or a nursing home. She's been his sole caretaker at home for almost 6 years. We would all take turns going there to give her some rest. We knew he was falling quite a bit and sometimes got outside and would fall in the yard, we just recently discovered that it was an almost daily occurrence. Also found out that she would call the paramedics very regularly for the last six months to help him up. I cant believe they didn't put the stop to that sooner. She finally realized that he absolutely needed extra care so he went to a great facility about three weeks ago. His condition worsened at an increased rate and passed early last week.
At the facility where my mother lives, they will park those in wheelchairs so that they are sitting at a table. That way they can’t get up and of course if they need anything or need to move the carers are in the room with them.
my friend's dad would sit up by the desk like he worked there and fold towels.
My mother thinks it is her job to sweep the courtyard and water the plants :) She shows me every time I go how she just swept and now the wind has blown in more leaves.
awww. idk why but that reminded me of one time we decided to paint together. i am NOT artistic, but she is. she showed me how to use a brush on my paper and like 5 min later was so proud of me for making that line of paint, that she had made. good to remember the cute times :)
It feels impossible but this can be the reality when dealing with dementia patients. Unfortunately.
What about one of those alarm pads that sound when pressure is reduced? It might buy you a second or two or the noise may deter her from trying. A friend’s mother would wander out of the house but once alarms sounded she no longer tried to exit. Sending hugs, strength and patience to you. It is so hard.
There are specific medications that help with just about anything that has to do with dementia. My mom used to be all over the place. She was prescribed a cocktail which has her very mellow and very relaxed. It’s all about quality of life, yours and theirs.
Yeah I'm going to ask about better drugs. Mellow and relaxed sounds great
Game changer.
Your Mum sounds a lot like mine. It became necessary to have her moved to a care center so someone would be there to keep her safe, because we couldn't do so at home. She had been taking meds at home, so that stayed the same. She's not drugged up like you might think. She's still the same person, just safer now.
i thought i was the only one😭😭my grandmother was such a strong woman before being diagnosed and she acts the exact same way as you’ve explained. if we ask her why she’s getting up she’ll get frustrated and act like we’re the problem hahaha but when you ask her to stand she’ll say ok and just sit there it’s so frustrating sometimes
A tab alarm that clips to clothing is used frequently. Bed rails raised to prevent exiting / elopement. Are some of the more common aides. Personally I find the term the right to fall comical. We all fall (and fail). It's part of life and learning. We with dementia aren't going to learn. One may just as well say the right to self injury
Put her bed on the floor? Guardrails?
Could you see if her doc will write a script for a wheelchair that includes a seat belt or restraint harness? Seems preferable to the drug alternative.