Dementia at home, what to do?
March 27, 2019 5:39 AM Subscribe
My 85 year old father is showing signs of accelerating dementia, but getting him into a home will take time. What should be done to keep him safe in the meantime?
He's getting the year wrong, saying strange things, trying to convince my mother they need to leave the house at 11pm in the winter for nonsense reasons, and the other day he forgot to turn off a tap and flooded a bathroom.
He hasn't cooked in about 20 years so we're not that concerned about the stove (is that reasonable)? My mom has been hiding his shoes and wallet to keep him from leaving, but I'm concerned he may eventually just leave without them.
He sleeps on the ground floor; my mother sleeps upstairs. I'd like to put a pressure-sensitive mat in the hallway leading to the home's two exits, so she can sleep soundly when he gets up to use the bathroom, but will be awakened upstairs if he tries to leave the house. Can anyone recommend a brand that would work for this?
Complication: she's a hoarder (dollar store junk and papers, like this image... not animals or stinky waste), so their house is cluttered and overwhelming.
Complication: He has major hearing loss and wears a hearing aid, but this past week it's seemed like he's almost totally deaf. I think he either broke the hearing aid, or has forgotten to turn it on, or has had some sort of neurological event that's made his hearing / comprehension suddenly worse. Communication is really difficult.
Complication: My parents' marriage is... challenging... with years of resentment and poor communication. My mother is extremely anxious, controlling, and hypervigilant, and my father is disinterested, minimizing, and checked-out; this was always their dynamic but the slow creep of dementia has definitely exacerbated both of their worst traits and triggers.
It's going to take a while to untangle things and figure out next steps. In the meantime, can anyone suggest some simple, concrete tasks and gadgets that will help improve his home safety, and improve her caregiving experience?
So far I have:
Figure out why hearing aid isn't working
Get a whiteboard slate for communication
Check / add smoke detectors in kitchen and bedrooms
Get childproof knob covers for the stove
Make sure sink overflow drains work
Hide medications
Leave a light on in the bathroom so it's easy to find at night
Clear enough space that a medical team could get a stretcher in if needed
Put cards with name and contact info in his pockets
What else? Ugh, this is hard. Thanks.
He's getting the year wrong, saying strange things, trying to convince my mother they need to leave the house at 11pm in the winter for nonsense reasons, and the other day he forgot to turn off a tap and flooded a bathroom.
He hasn't cooked in about 20 years so we're not that concerned about the stove (is that reasonable)? My mom has been hiding his shoes and wallet to keep him from leaving, but I'm concerned he may eventually just leave without them.
He sleeps on the ground floor; my mother sleeps upstairs. I'd like to put a pressure-sensitive mat in the hallway leading to the home's two exits, so she can sleep soundly when he gets up to use the bathroom, but will be awakened upstairs if he tries to leave the house. Can anyone recommend a brand that would work for this?
Complication: she's a hoarder (dollar store junk and papers, like this image... not animals or stinky waste), so their house is cluttered and overwhelming.
Complication: He has major hearing loss and wears a hearing aid, but this past week it's seemed like he's almost totally deaf. I think he either broke the hearing aid, or has forgotten to turn it on, or has had some sort of neurological event that's made his hearing / comprehension suddenly worse. Communication is really difficult.
Complication: My parents' marriage is... challenging... with years of resentment and poor communication. My mother is extremely anxious, controlling, and hypervigilant, and my father is disinterested, minimizing, and checked-out; this was always their dynamic but the slow creep of dementia has definitely exacerbated both of their worst traits and triggers.
It's going to take a while to untangle things and figure out next steps. In the meantime, can anyone suggest some simple, concrete tasks and gadgets that will help improve his home safety, and improve her caregiving experience?
So far I have:
Figure out why hearing aid isn't working
Get a whiteboard slate for communication
Check / add smoke detectors in kitchen and bedrooms
Get childproof knob covers for the stove
Make sure sink overflow drains work
Hide medications
Leave a light on in the bathroom so it's easy to find at night
Clear enough space that a medical team could get a stretcher in if needed
Put cards with name and contact info in his pockets
What else? Ugh, this is hard. Thanks.
Due to my personal family situation I’ve never had to deal with this, so I am just brainstorming: access to automobiles, firearms, and power tools would be things to control. It also might be a good idea to make sure there is access to things that he will find soothing and entertaining (you will have to determine what that will be in his case). Good luck and they are lucky to have a dilligent child such as you.
posted by Gilgamesh's Chauffeur at 5:56 AM on March 27, 2019 [1 favorite]
posted by Gilgamesh's Chauffeur at 5:56 AM on March 27, 2019 [1 favorite]
When we were taking care of my late FIL, we slept upstairs and he slept downstairs. We used a baby monitor to listen for any signs of distress.
You might also want to make sure the water heater is set at a safe temperature level, to avoid scalding.
His doctor's office may be able to refer you to an at-home risk assessment service, or maybe there's a local elder association that could help with a referral. Home visiting nurse, etc.
posted by Marie Mon Dieu at 6:06 AM on March 27, 2019
You might also want to make sure the water heater is set at a safe temperature level, to avoid scalding.
His doctor's office may be able to refer you to an at-home risk assessment service, or maybe there's a local elder association that could help with a referral. Home visiting nurse, etc.
posted by Marie Mon Dieu at 6:06 AM on March 27, 2019
I’m so sorry you’re facing this.
Does the Alzheimer’s Association have a chapter near you? I think I would start there. They should know all about local resources for families in your situation.
posted by eirias at 6:08 AM on March 27, 2019 [1 favorite]
Does the Alzheimer’s Association have a chapter near you? I think I would start there. They should know all about local resources for families in your situation.
posted by eirias at 6:08 AM on March 27, 2019 [1 favorite]
I suggest looking into GPS tracking devices for seniors with memory impairments. There was recently an incident in my neighborhood where this was critical for finding a senior who had wandered off.
posted by avocado_of_merriment at 6:17 AM on March 27, 2019 [4 favorites]
posted by avocado_of_merriment at 6:17 AM on March 27, 2019 [4 favorites]
My best friend's Mom just went through this (she's now in a memory unit and doing so much better with structure), but some of the things that were suggested were:
Alarms on the doors. I don't know about the mat you mentioned, but something that will alert companions to someone leaving is good.
Putting locks up high or down low (like a sliding lock) to stop someone from leaving. Dementia patients do a lot of things from memory, so looking up or down for a lock can slow them down, if not stop them.
Take the dials off the stove and only replace them when it's in-use. Though your Dad may not be in danger of using it, occasionally dementia sufferers may try new things, or just fiddle with knobs and dials that are around, and since the stove can be dangerous, it's good to keep it unusable, even by accident.
Webcams/monitors to help see where he is, if you need to be in another part of the house.
Also, having a very recent photo of your Dad's face, in case he does wander off, will be helpful to any people trying to find him.
posted by xingcat at 6:19 AM on March 27, 2019 [8 favorites]
Alarms on the doors. I don't know about the mat you mentioned, but something that will alert companions to someone leaving is good.
Putting locks up high or down low (like a sliding lock) to stop someone from leaving. Dementia patients do a lot of things from memory, so looking up or down for a lock can slow them down, if not stop them.
Take the dials off the stove and only replace them when it's in-use. Though your Dad may not be in danger of using it, occasionally dementia sufferers may try new things, or just fiddle with knobs and dials that are around, and since the stove can be dangerous, it's good to keep it unusable, even by accident.
Webcams/monitors to help see where he is, if you need to be in another part of the house.
Also, having a very recent photo of your Dad's face, in case he does wander off, will be helpful to any people trying to find him.
posted by xingcat at 6:19 AM on March 27, 2019 [8 favorites]
What is your parents' financial situation like? If you are able to get a home health aide (doing "companion" or "respite" care) in for a few hours a week, they will be able to help your dad through the hearing aide issue (and take him to the doctor if need be), get the slate, figure out some communication workarounds, all of that non-medical elder care stuff. My grandma has had caregivers through Home Instead, and the two she had over the course of maybe 10 years were amazing. I mean, they both have moved far away now, which is why they're no longer her caregivers, but we're still in touch. The catch is that it's expensive, although it's not as expensive as (for example) a memory care unit.
posted by rue72 at 6:49 AM on March 27, 2019
posted by rue72 at 6:49 AM on March 27, 2019
A medical alert bracelet with his name and address may also be helpful if he wanders off.
posted by FencingGal at 6:56 AM on March 27, 2019 [2 favorites]
posted by FencingGal at 6:56 AM on March 27, 2019 [2 favorites]
I would disable the stove somehow (child locks or remove knobs) - although your dad hasn’t cooked for 20 years, people with dementia often sort of “live in the past” - so it’s possible that he’ll try to cook.
I second the idea of paid caregivers. It’s really a lot of work - both emotional and physical - to take care of someone 24/7. Even a few hours a week would be a good respite for your mother. Medicare doesn’t usually cover caregivers (though it sometimes covers home nursing), but private insurance and Medicaid may cover a caregiver, if applicable.
Another option (in addition to or instead of caregivers) is a day program for people with dementia. I’d check with a local senior center to see if they can refer you to one, or if you happen to be in the East Bay of the SF Bay Area you can memail me for info on some specific centers. Health insurance may pay for this and/or there may be sliding scale fees if finances are a concern. Day programs like this can be really fantastic for both the person with dementia and the caregiver.
posted by insectosaurus at 6:58 AM on March 27, 2019 [1 favorite]
I second the idea of paid caregivers. It’s really a lot of work - both emotional and physical - to take care of someone 24/7. Even a few hours a week would be a good respite for your mother. Medicare doesn’t usually cover caregivers (though it sometimes covers home nursing), but private insurance and Medicaid may cover a caregiver, if applicable.
Another option (in addition to or instead of caregivers) is a day program for people with dementia. I’d check with a local senior center to see if they can refer you to one, or if you happen to be in the East Bay of the SF Bay Area you can memail me for info on some specific centers. Health insurance may pay for this and/or there may be sliding scale fees if finances are a concern. Day programs like this can be really fantastic for both the person with dementia and the caregiver.
posted by insectosaurus at 6:58 AM on March 27, 2019 [1 favorite]
Some thoughts...
If he's able to use the white board now, that's fantastic. That said, its efficacy will drop off pretty quickly as the disease progresses. He can eventually lose the ability to so much as hold a marker steadily, let alone write with it. Reading ability will also deteriorate.
Yes, on the smoke detectors.
As has been mentioned, just remove the stove knobs altogether. Definitely childproof cabinets and drawers that contain anything that he might injure himself with.
Good on the sinks and leaving a light on.
Clearing space for EMTs...It's a good start, but the hoarding itself needs to be tackled. It's just too dangerous of an environment for him. Not to scare you, but it's a huge fire hazard. Going through this with my mom taught me that it pays for you to be paranoid as hell about almost everything. If he can start a fire, or get something burning (like, say, from the stove) you need to assume he will. The hoarding mess is a serious hazard (for both of them) and either needs to be cleared out, or he needs to be moved to a safer environment.
ID cards...It's a good move that won't hurt. But, it's pretty much guaranteed that he'll find them in his pockets and remove them. Consider sewing tags with the information into his clothes.
Pretty much anything that is not permanently glued to their body is eventually going to end up lost. ID bracelets, trackers, First-Alert fobs/necklaces, dentures, rings, eyeglasses, money, wallets, keys, phones, etc. etc. If it can be removed, it will be. That's not to say to not do those things. They are life-savers for the duration that he is able to keep them with him. I'm just saying he will, eventually, lose them. So, don't put a bracelet on him and think you've solved the problem.
If he is wearing any important/expensive jewelry, remove it and put in safe-keeping. Similarly, even if he doesn't wear it, make sure he can't find it and lose it. We were able to rescue the 25th-anniversary ring my dad got mom (lots of diamonds!) but she managed to lose a ruby ring before we could get to it. She also, somehow, managed to get rid of all of her antique silverware. We're not sure if she sold it all, or merely put it in the trash.
I second the idea of seeing if there's a chapter of the Alzheimer's Association in your area. They will have tons of information for you. More importantly, they will probably have support groups for caregivers. These are invaluable resources, if, for no other reason than you will meet others going through the same things you are, as well as others who have navigated these things.
I am so sorry you are going through this. I know it feels like an impossible task. And, truthfully, there definitely is a "herding cats" aspect to dealing with an dementia sufferer, and the complication factor of your mom doesn't sound like fun, either. Just know that you have support both here and in support groups. Thousands of families go through this every year. You aren't alone in this. If you have questions, or just need an ear, don't hesitate to ask.
posted by Thorzdad at 7:12 AM on March 27, 2019 [7 favorites]
~I'd like to put a pressure-sensitive mat in the hallway leading to the home's two exits, so she can sleep soundly when he gets up to use the bathroom, but will be awakened upstairs if he tries to leave the house.Dementia sufferers develop a more "shuffling" gait as the disease progresses, and anything on the floor like a mat or rug can precipitate a fall. Often, it gets bad enough to where even standard carpeting will trip them up. So, I would advise against using a mat of any sort. Your best bet is to get an electronic alarm that is triggered whenever a door is opened at night.
~He hasn't cooked in about 20 years so we're not that concerned about the stove (is that reasonable)? My mom has been hiding his shoes and wallet to keep him from leaving, but I'm concerned he may eventually just leave without them.The stove needs to be addressed. Remove all of the knobs. ALL of the knobs. It's not that he might consciously try to cook anything. It's that he'll do things like try to warm up the house, or light a cigarette, or whatever else his mind is trying to do. There is no rhyme or reason (to us) for what a dementia sufferer does.
~My mom has been hiding his shoes and wallet to keep him from leaving, but I'm concerned he may eventually just leave without them.If he's a wanderer, he's going to wander, regardless of whether he's properly dressed or carrying his ID. My mom walked out of her condo in the middle of winter in only her housecoat. They aren't aware of conditions. They will just go, barefoot or not.
~Complication: she's a hoarder...Yeah, that's a huge problem. That a bunch of places where he's going to start losing things. He himself will probably start getting lost in the mazes. That's also a situation where he can very well injure himself. The hoarding must be addressed.
Figure out why hearing aid isn't workingHe will probably lose the hearing aid eventually, but for now it's a good thing for him to hear.
Get a whiteboard slate for communication
Check / add smoke detectors in kitchen and bedrooms
Get childproof knob covers for the stove
Make sure sink overflow drains work
Hide medications
Leave a light on in the bathroom so it's easy to find at night
Clear enough space that a medical team could get a stretcher in if needed
Put cards with name and contact info in his pockets
If he's able to use the white board now, that's fantastic. That said, its efficacy will drop off pretty quickly as the disease progresses. He can eventually lose the ability to so much as hold a marker steadily, let alone write with it. Reading ability will also deteriorate.
Yes, on the smoke detectors.
As has been mentioned, just remove the stove knobs altogether. Definitely childproof cabinets and drawers that contain anything that he might injure himself with.
Good on the sinks and leaving a light on.
Clearing space for EMTs...It's a good start, but the hoarding itself needs to be tackled. It's just too dangerous of an environment for him. Not to scare you, but it's a huge fire hazard. Going through this with my mom taught me that it pays for you to be paranoid as hell about almost everything. If he can start a fire, or get something burning (like, say, from the stove) you need to assume he will. The hoarding mess is a serious hazard (for both of them) and either needs to be cleared out, or he needs to be moved to a safer environment.
ID cards...It's a good move that won't hurt. But, it's pretty much guaranteed that he'll find them in his pockets and remove them. Consider sewing tags with the information into his clothes.
Pretty much anything that is not permanently glued to their body is eventually going to end up lost. ID bracelets, trackers, First-Alert fobs/necklaces, dentures, rings, eyeglasses, money, wallets, keys, phones, etc. etc. If it can be removed, it will be. That's not to say to not do those things. They are life-savers for the duration that he is able to keep them with him. I'm just saying he will, eventually, lose them. So, don't put a bracelet on him and think you've solved the problem.
If he is wearing any important/expensive jewelry, remove it and put in safe-keeping. Similarly, even if he doesn't wear it, make sure he can't find it and lose it. We were able to rescue the 25th-anniversary ring my dad got mom (lots of diamonds!) but she managed to lose a ruby ring before we could get to it. She also, somehow, managed to get rid of all of her antique silverware. We're not sure if she sold it all, or merely put it in the trash.
I second the idea of seeing if there's a chapter of the Alzheimer's Association in your area. They will have tons of information for you. More importantly, they will probably have support groups for caregivers. These are invaluable resources, if, for no other reason than you will meet others going through the same things you are, as well as others who have navigated these things.
I am so sorry you are going through this. I know it feels like an impossible task. And, truthfully, there definitely is a "herding cats" aspect to dealing with an dementia sufferer, and the complication factor of your mom doesn't sound like fun, either. Just know that you have support both here and in support groups. Thousands of families go through this every year. You aren't alone in this. If you have questions, or just need an ear, don't hesitate to ask.
posted by Thorzdad at 7:12 AM on March 27, 2019 [7 favorites]
He hasn't cooked in about 20 years so we're not that concerned about the stove (is that reasonable)?
Just another data point to address the stove issue - it doesn't matter if he doesn't cook. One of the first signs of my uncle's dementia was going into the kitchen and seeing that he had, for some reason, lit the fire on the gas cooker and wandered away with it still burning. He never cooked, there was no reason for him to use that cooker and it was probably the first time in decades that he had lit the fire on the cooker. If doable, do try to make it so that your dad cannot switch the stove on.
posted by unicorn chaser at 7:18 AM on March 27, 2019 [1 favorite]
Just another data point to address the stove issue - it doesn't matter if he doesn't cook. One of the first signs of my uncle's dementia was going into the kitchen and seeing that he had, for some reason, lit the fire on the gas cooker and wandered away with it still burning. He never cooked, there was no reason for him to use that cooker and it was probably the first time in decades that he had lit the fire on the cooker. If doable, do try to make it so that your dad cannot switch the stove on.
posted by unicorn chaser at 7:18 AM on March 27, 2019 [1 favorite]
Oh! One other thing that's helped is Tile, which allows you to find smaller items (not false teeth or hearing aids, but their cases are big enough to stick tiles onto) through an app on your phone. It can really help with things like wallets, keys, remote controls, etc.
posted by xingcat at 7:43 AM on March 27, 2019 [1 favorite]
posted by xingcat at 7:43 AM on March 27, 2019 [1 favorite]
There are both watches and shoes (or maybe it was a clip that you can put on the shoes?) that will track people who wander off.
posted by slidell at 7:44 AM on March 27, 2019
posted by slidell at 7:44 AM on March 27, 2019
GPS trackers in his coat, shoes, anything he always wears.
This message board may be of help, as you will probably have many, many more questions and need support: Alz Connected.
If your dad is hospitalized for any reason at all, contact the hospital social worker to see if he can be fast-tracked into care.
posted by Riverine at 7:45 AM on March 27, 2019
This message board may be of help, as you will probably have many, many more questions and need support: Alz Connected.
If your dad is hospitalized for any reason at all, contact the hospital social worker to see if he can be fast-tracked into care.
posted by Riverine at 7:45 AM on March 27, 2019
My mom was not a wanderer--she became more and more passive as her dementia progressed. She needed to be coached through basic self care: i.e. brushing teeth (which is important--infections enter the body through poor dental hygiene), bathing, getting dressed, etc. I lived with her for 5-6 years as her dementia progressed, but since I had a full-time job, we had home caregivers come in from an agency. All but one of them were great. The one that was not, was found out quickly and we were reimbursed for the theft. That said, make sure if you are having someone come in that all valuables are hidden, locked away. This woman found a credit card that I didn't remember Mom even having and used it to make some purchases. Hide important papers, social security information, and as above, expensive jewelry, etc. Like I said, the agency was careful and responsive and had insurance, but this one woman slipped through the cracks.
If your dad is wandering, one of the simple things the agency suggested was to put a simple bolt on the doors to the outside at the top--since it was in an unusual place, it stopped her from opening the door--she couldn't reason out why it didn't open. She never wandered, but she would open the front door and look out and then leave it open.
Make sure you have access to all your parent's financial information--now is the time to sit down with your Mom and find out exactly what their financial situation is--does she have full control of everything? Do they have a will/trust? What is their insurance situation, etc. Also, if your dad has been handling the finances--see if she has the passwords, etc. to all their accounts. Also, now would be the time for her to take control, change the passwords, etc. It is hard to have these conversations and your Mom and Dad may resist, but it has got to be done. It will make everything easier in the future. Do your parents have long term care or disability insurance? You might want to talk with your Mom about you getting power of attorney--it is much, much easier to do it when she is fully aware than later. You need to have a meeting with an attorney who specializes in elder issues. The Alzheimer's Asso. can recommend someone. If your Dad is still somewhat "there" now is definitely the time to do it. Have this discussion ASAP.
I also support that you need to deal with your Mom's hoarding tendencies now as well--get the house cleared out as much as possible. Falling is also a huge deal for elders in general, and folks with dementia specifically. Take up area rugs, consider putting in extra handrails (i.e. on both sides of the stairs, and in the halls). Put safety rails in the shower/bath and by the toilet.
All of this is going to be a lot of hard work on your part, and on your Mom's part. I'm not a joiner, but my sister-in-law who was going through this with her mom at the same time, found a lot of support and comfort in joining local support groups for caregivers (I took advantage of all the tips and information she picked up). Being around folks who are going through the same situation is tremendously helpful.
posted by agatha_magatha at 8:14 AM on March 27, 2019 [2 favorites]
If your dad is wandering, one of the simple things the agency suggested was to put a simple bolt on the doors to the outside at the top--since it was in an unusual place, it stopped her from opening the door--she couldn't reason out why it didn't open. She never wandered, but she would open the front door and look out and then leave it open.
Make sure you have access to all your parent's financial information--now is the time to sit down with your Mom and find out exactly what their financial situation is--does she have full control of everything? Do they have a will/trust? What is their insurance situation, etc. Also, if your dad has been handling the finances--see if she has the passwords, etc. to all their accounts. Also, now would be the time for her to take control, change the passwords, etc. It is hard to have these conversations and your Mom and Dad may resist, but it has got to be done. It will make everything easier in the future. Do your parents have long term care or disability insurance? You might want to talk with your Mom about you getting power of attorney--it is much, much easier to do it when she is fully aware than later. You need to have a meeting with an attorney who specializes in elder issues. The Alzheimer's Asso. can recommend someone. If your Dad is still somewhat "there" now is definitely the time to do it. Have this discussion ASAP.
I also support that you need to deal with your Mom's hoarding tendencies now as well--get the house cleared out as much as possible. Falling is also a huge deal for elders in general, and folks with dementia specifically. Take up area rugs, consider putting in extra handrails (i.e. on both sides of the stairs, and in the halls). Put safety rails in the shower/bath and by the toilet.
All of this is going to be a lot of hard work on your part, and on your Mom's part. I'm not a joiner, but my sister-in-law who was going through this with her mom at the same time, found a lot of support and comfort in joining local support groups for caregivers (I took advantage of all the tips and information she picked up). Being around folks who are going through the same situation is tremendously helpful.
posted by agatha_magatha at 8:14 AM on March 27, 2019 [2 favorites]
Oh dear. This is so rough.
Right now I'm dealing with my aged mother. She doesn't suffer from dementia, but she does sometimes take a double dose of her medicine, because she thinks it isn't working, and when she does, she loses all control. She's set fire to her home several times. My mother has always hated cooking, but when (over)medicated, she suddenly feels the need to cook an egg or something, and then falls asleep when the medicine works. She is also a hoarder. Since she lives in a rental, she is getting thrown out. I spend a lot of time here on Metafilter because I can't handle a full-time job because of the chaos this is creating in my life.
Things we have done:
- we got her on a "holiday", and emptied her apartment while she was away, to lessen the risks of fire and vermin. She hated this and us because of it, but I was firm that there was nothing she could do about it. She is still angry and I still answer that I can't and won't get her 1000 issues of the local free newspaper back. I understand that this particular argument is with your mother, not your father. We put some of the stuff in cheap container storage for "later", maybe this can work for your mother? Say she can have it back when you find a nursing home for your dad? My mother actually enjoys that now she can have friends over because her home doesn't look like a junkyard, and I don't mind being blamed.
- there is a nurse who dispenses our mother's medicine and keeps it locked up. I am not in the US, so maybe this is impossible for you to pay, so you might need your mother to help with this. I can see how it can worsen their relationship, but again, you might "take the blame" for her. After all, she is the one living with him.
- we have bought a thing for the stove that shuts it off after 15 minutes. You'll have to google it, since I'm not in the US. But it is smart.
- my mother has accepted that I can have all information about her and talk with all medical staff and other authorities. It is not the same as power of attorney, I can't access her bank account, but it helps a lot. I think our system is copied from the US, so it may be available in your state. It is written into her patient's journals.
She has also accepted that all communication with her lawyer goes through me.
Luckily my mother is not very mobile. But friends have used the double door handle system mentioned above, and it seems very efficient.
Also, putting nametags in his clothing, like you do for kid's gym wear is something that works for some people.
My dad had beginning dementia before he died, and we got power of attorney when he was diagnosed. We didn't really use it for anything, because he was clear enough, but it will be a support system for your mother.
posted by mumimor at 8:35 AM on March 27, 2019
Right now I'm dealing with my aged mother. She doesn't suffer from dementia, but she does sometimes take a double dose of her medicine, because she thinks it isn't working, and when she does, she loses all control. She's set fire to her home several times. My mother has always hated cooking, but when (over)medicated, she suddenly feels the need to cook an egg or something, and then falls asleep when the medicine works. She is also a hoarder. Since she lives in a rental, she is getting thrown out. I spend a lot of time here on Metafilter because I can't handle a full-time job because of the chaos this is creating in my life.
Things we have done:
- we got her on a "holiday", and emptied her apartment while she was away, to lessen the risks of fire and vermin. She hated this and us because of it, but I was firm that there was nothing she could do about it. She is still angry and I still answer that I can't and won't get her 1000 issues of the local free newspaper back. I understand that this particular argument is with your mother, not your father. We put some of the stuff in cheap container storage for "later", maybe this can work for your mother? Say she can have it back when you find a nursing home for your dad? My mother actually enjoys that now she can have friends over because her home doesn't look like a junkyard, and I don't mind being blamed.
- there is a nurse who dispenses our mother's medicine and keeps it locked up. I am not in the US, so maybe this is impossible for you to pay, so you might need your mother to help with this. I can see how it can worsen their relationship, but again, you might "take the blame" for her. After all, she is the one living with him.
- we have bought a thing for the stove that shuts it off after 15 minutes. You'll have to google it, since I'm not in the US. But it is smart.
- my mother has accepted that I can have all information about her and talk with all medical staff and other authorities. It is not the same as power of attorney, I can't access her bank account, but it helps a lot. I think our system is copied from the US, so it may be available in your state. It is written into her patient's journals.
She has also accepted that all communication with her lawyer goes through me.
Luckily my mother is not very mobile. But friends have used the double door handle system mentioned above, and it seems very efficient.
Also, putting nametags in his clothing, like you do for kid's gym wear is something that works for some people.
My dad had beginning dementia before he died, and we got power of attorney when he was diagnosed. We didn't really use it for anything, because he was clear enough, but it will be a support system for your mother.
posted by mumimor at 8:35 AM on March 27, 2019
My dad's hearing aid stopped working well, and he was really, really deaf without it. He scheduled an audiologist visit, and it turned out the hearing aid was packed with ear wax. His hearing had not gotten worse, but the device was useless until the technician cleaned it out. Not sure if this is something you can do yourself or if it takes expertise, but that would be a relatively easy fix if that's the problem.
Keep in mind that among all the clutter emergency responders might not be able to maneuver. That's a powerful argument I was able to use with an elderly relative of mine who lives alone. I was able to remove or reorganize tons of stuff cluttering hallways, the back door, and in particular, the stairway.
For medications, if your parents have not already done so, consider using pillboxes with the days of the week and time of day compartments. Keep medications away from your dad, who might not remember if he took his meds, but this organization can help your mom correctly dispense his meds. Preparing the box a week ahead of time will also alert her to which ones need refilling.
For in-home help, no matter how tempting it is to hire people for daytime hours when you mom needs to do stuff like grocery shop, please consider someone to stay at night. If your mom is unable to sleep well because she's nervous about your dad, or if he wakes her at night (dementia frequently causes people to reverse sleep-awake patterns) getting good sleep will help her immeasurably.
Contacting local elderly organizations and dementia organizations can be very helpful in identifying community support, and if they offer social worker assistance, so much the better. Social workers are worth their weight in platinum.
posted by citygirl at 8:55 AM on March 27, 2019 [1 favorite]
Keep in mind that among all the clutter emergency responders might not be able to maneuver. That's a powerful argument I was able to use with an elderly relative of mine who lives alone. I was able to remove or reorganize tons of stuff cluttering hallways, the back door, and in particular, the stairway.
For medications, if your parents have not already done so, consider using pillboxes with the days of the week and time of day compartments. Keep medications away from your dad, who might not remember if he took his meds, but this organization can help your mom correctly dispense his meds. Preparing the box a week ahead of time will also alert her to which ones need refilling.
For in-home help, no matter how tempting it is to hire people for daytime hours when you mom needs to do stuff like grocery shop, please consider someone to stay at night. If your mom is unable to sleep well because she's nervous about your dad, or if he wakes her at night (dementia frequently causes people to reverse sleep-awake patterns) getting good sleep will help her immeasurably.
Contacting local elderly organizations and dementia organizations can be very helpful in identifying community support, and if they offer social worker assistance, so much the better. Social workers are worth their weight in platinum.
posted by citygirl at 8:55 AM on March 27, 2019 [1 favorite]
I've gone through this twice including living with the person with dementia. First thing is buy and read the 36 hour day. It was the most helpful thing we did by far. Second thing, this is going to be really, really difficult. This is time to rally all of the support you can.
1. The faster you move him, the better. We did not believe this when the neurologist told us, but she was absolutely right and dad adjusted faster than we ever thought was possible. It will be hard for all of you, including him, but it is essential that he is in a place that he is safe as soon as possible. If he's not shuffling yet, a mat would be great. Once he starts, the mat has to go.
2. Is he a veteran during any wartime even if he didn't go overseas? If so, he AND your mom qualify for veterans benefits. it is a huge huge help. Feel free to memail me for info.
3. If it's impacted ear wax, you should absolutely not do anything yourself and take him to the audiologist.
4. We found that notes and the whiteboard slate didn't work at all for us, but it might for you. Keep trying new things. Every person with dementia is different. Some things will work, some won't. Sometimes, a black mat will be so disorienting (they think it's a hole) that they won't step on it. You absolutely never know what is going to work.
5. Meals on wheels or some other meal plan. Our parents were eating a spoonful of cottage cheese and canned soups and absolutely not thriving when we figured out what was going on. Mom may be too tired to cook and nutritious food must be a constant.
6. If something happens to mom, dad may not know what to do. She should have some sort of medical call device.
7. Get your dad declared non-compos mentis immediately. That way you'll have access to his accounts, his doctors. Put you and your mom on everything. Get power of attorney to your mom and you.
I am totally available to answer questions. Please feel free to me mail me anytime.
posted by Sophie1 at 10:32 AM on March 27, 2019 [3 favorites]
1. The faster you move him, the better. We did not believe this when the neurologist told us, but she was absolutely right and dad adjusted faster than we ever thought was possible. It will be hard for all of you, including him, but it is essential that he is in a place that he is safe as soon as possible. If he's not shuffling yet, a mat would be great. Once he starts, the mat has to go.
2. Is he a veteran during any wartime even if he didn't go overseas? If so, he AND your mom qualify for veterans benefits. it is a huge huge help. Feel free to memail me for info.
3. If it's impacted ear wax, you should absolutely not do anything yourself and take him to the audiologist.
4. We found that notes and the whiteboard slate didn't work at all for us, but it might for you. Keep trying new things. Every person with dementia is different. Some things will work, some won't. Sometimes, a black mat will be so disorienting (they think it's a hole) that they won't step on it. You absolutely never know what is going to work.
5. Meals on wheels or some other meal plan. Our parents were eating a spoonful of cottage cheese and canned soups and absolutely not thriving when we figured out what was going on. Mom may be too tired to cook and nutritious food must be a constant.
6. If something happens to mom, dad may not know what to do. She should have some sort of medical call device.
7. Get your dad declared non-compos mentis immediately. That way you'll have access to his accounts, his doctors. Put you and your mom on everything. Get power of attorney to your mom and you.
I am totally available to answer questions. Please feel free to me mail me anytime.
posted by Sophie1 at 10:32 AM on March 27, 2019 [3 favorites]
sorry. my dad too. he seems to be advancing from what a neurologist calls "mild cognitive impairment" to something less mild. he appears to "sundown" - growing agitated late in the day and certain that he is not where he should be and has important things to do. he has wandered off barefoot in the middle of the night (in winter) once, and was brought home by police; he now wears a pendant identifying him and registered with local constabulary, and mom has installed additional locks (which, admittedly, he has sometimes exhibited a capacity to unlock). mom also tracks his phone, which was useful while he was still driving reliably but not so certain about where he was or where he was going. he no longer drives, but does not always remember that. he was going to the gym with a friend, but wandered off once, terrifying that guy -- who, anyway, reports that pop is not doing much at the gym but wandering around and then pestering him to leave -- who now does not want to be responsible (mom found pop on the tracking app -- he was walking home).
such developments led to my searching ask for such resources; here's that email i sent to mom cherrypicking links from previouslies, lightly edited:
the eldercare locator - https://eldercare.acl.gov/Public/Index.aspx
project lifesaver, "bringing loved ones home" - https://projectlifesaver.org/
national association of area agencies on aging - https://www.n4a.org/
alzheimer's association - https://www.alz.org/
community resource finder - https://www.communityresourcefinder.org/
https://mydementedmom.com/ - a blog
https://www.alzstore.com/Default.asp - the alzheimer's store
a recommendation for a book called "The 36-hour Day:A Family Guide to Caring for People Who Have Alzheimer's, Related Dementias, and Memory Loss," that we nevertheless shan't judge by its title - https://www.amazon.com/exec/obidos/ASIN/1455521159/metafilter-20/ref=nosim/
these have been cherrypicked from within the discussion surrounding the comment at this ask.metafilter link, which i clicked on because it seemed germane to our interests.
also https://ask.metafilter.com/262788/Please-help-us-get-my-mom-into-memory-care
posted by 20 year lurk at 10:40 AM on March 27, 2019
such developments led to my searching ask for such resources; here's that email i sent to mom cherrypicking links from previouslies, lightly edited:
the eldercare locator - https://eldercare.acl.gov/Public/Index.aspx
project lifesaver, "bringing loved ones home" - https://projectlifesaver.org/
national association of area agencies on aging - https://www.n4a.org/
alzheimer's association - https://www.alz.org/
community resource finder - https://www.communityresourcefinder.org/
https://mydementedmom.com/ - a blog
https://www.alzstore.com/Default.asp - the alzheimer's store
a recommendation for a book called "The 36-hour Day:A Family Guide to Caring for People Who Have Alzheimer's, Related Dementias, and Memory Loss," that we nevertheless shan't judge by its title - https://www.amazon.com/exec/obidos/ASIN/1455521159/metafilter-20/ref=nosim/
these have been cherrypicked from within the discussion surrounding the comment at this ask.metafilter link, which i clicked on because it seemed germane to our interests.
also https://ask.metafilter.com/262788/Please-help-us-get-my-mom-into-memory-care
posted by 20 year lurk at 10:40 AM on March 27, 2019
Deafness can exacerbate the symptoms of dementia, so his issue with his hearing aid just might be a factor in his dementia recently getting worse. It may be worth getting that looked into and see if correcting it helps.
If your dad served in the military, the Veterans Administration has a Senior Pension program that provides some funding to help pay some of the expenses for the care of aged vets and/or their spouses. The maximum monthly benefit is roughly enough to pay for a half-time care attendant. The state or county may have programs that would also help provide funding.
I've purchased motion-sensor rechargeable led lights and stuck them in my bathroom, hallway, and kitchen to help my mom see when she moves around at night.
If no one uses the stove, disconnect it if possible. If it's a gas stove, look for a gas shutoff behind it and turn it off, so if he ever does fiddle with the stove, nothing will happen.
Contact your parents' health providers and health insurance company (if they have anything besides Medicare) and ask for documents your parents can sign that grant permission for the providers to talk to you about their health stuff. See if you can get each of your parents to sign an advanced care directive.
Falls are another risk with your parents. It can be very difficult for one person to get an elderly person back up on their feet; worse yet when they can't help and can't follow instructions. You'll want to work out contingency plans for if/when one of them falls and can't get back up, and who'll show up to assist: you? A neighbor? The fire department?
If you put an alarm on or near the door, can your mom move fast enough to get there in time? Is she strong enough to stop him if he struggles? I'm not cool with the suggestion to put additional locks on the doors unless there's an able-bodied, competent person living there. You don't want them trapped inside in the event of a fire.
posted by Lunaloon at 11:14 AM on March 27, 2019 [2 favorites]
If your dad served in the military, the Veterans Administration has a Senior Pension program that provides some funding to help pay some of the expenses for the care of aged vets and/or their spouses. The maximum monthly benefit is roughly enough to pay for a half-time care attendant. The state or county may have programs that would also help provide funding.
I've purchased motion-sensor rechargeable led lights and stuck them in my bathroom, hallway, and kitchen to help my mom see when she moves around at night.
If no one uses the stove, disconnect it if possible. If it's a gas stove, look for a gas shutoff behind it and turn it off, so if he ever does fiddle with the stove, nothing will happen.
Contact your parents' health providers and health insurance company (if they have anything besides Medicare) and ask for documents your parents can sign that grant permission for the providers to talk to you about their health stuff. See if you can get each of your parents to sign an advanced care directive.
Falls are another risk with your parents. It can be very difficult for one person to get an elderly person back up on their feet; worse yet when they can't help and can't follow instructions. You'll want to work out contingency plans for if/when one of them falls and can't get back up, and who'll show up to assist: you? A neighbor? The fire department?
If you put an alarm on or near the door, can your mom move fast enough to get there in time? Is she strong enough to stop him if he struggles? I'm not cool with the suggestion to put additional locks on the doors unless there's an able-bodied, competent person living there. You don't want them trapped inside in the event of a fire.
posted by Lunaloon at 11:14 AM on March 27, 2019 [2 favorites]
mom reports "A Deeper Perspective on Alzheimer's and Other Dementias, practical tools with spiritual insights," by megan carnarius, has been useful; the several chapters that I read -- concerning stages of development of dementia -- were quite good.
this recent article -- "changing 'the tragedy narrative'" -- was also helpful, though more for managing our orientation toward pop & the cognitive impairment than for actually caring for pop.
self care, for the caregiver, or concerned close family/associate, is also important.
posted by 20 year lurk at 1:46 PM on March 27, 2019
this recent article -- "changing 'the tragedy narrative'" -- was also helpful, though more for managing our orientation toward pop & the cognitive impairment than for actually caring for pop.
self care, for the caregiver, or concerned close family/associate, is also important.
posted by 20 year lurk at 1:46 PM on March 27, 2019
On the hearing aid, definitely take your father to the audiologist, even if you think he may not be able to handle a hearing test. Hearing aids need cleaning and maintenance to keep working, and while I do a reasonably good job of looking after mine, they still go back to the audiologist once a year.
Since he is suffering from dementia, either you or your mother should learn how to do any routine maintenance that he can no longer manage. You may be able to find a manual online at the manufacturer's Web site.
posted by SereneStorm at 2:56 PM on March 27, 2019
Since he is suffering from dementia, either you or your mother should learn how to do any routine maintenance that he can no longer manage. You may be able to find a manual online at the manufacturer's Web site.
posted by SereneStorm at 2:56 PM on March 27, 2019
Have you concidered adult day programs? These programs are set up for people like your dad, can provide transportation and sometimes a meal (usually lunch).
Depending on the program, insurance and your finances this may be a feasable option or it may not, but the respite to have someone else take care of him even once a week during the day can be pretty invaluable .
Make sure to ask your mom periodically about dangerous behavior such as paranoia or aggression . These issues people can be quiet about and but really would be time for different interventions.
Start looking for care facilities now. Sometimes things change suddenly, and having an idea of what's out there will help you and everyone else make decisions.
posted by AlexiaSky at 4:40 PM on March 27, 2019 [2 favorites]
Depending on the program, insurance and your finances this may be a feasable option or it may not, but the respite to have someone else take care of him even once a week during the day can be pretty invaluable .
Make sure to ask your mom periodically about dangerous behavior such as paranoia or aggression . These issues people can be quiet about and but really would be time for different interventions.
Start looking for care facilities now. Sometimes things change suddenly, and having an idea of what's out there will help you and everyone else make decisions.
posted by AlexiaSky at 4:40 PM on March 27, 2019 [2 favorites]
In terms of behaviour management distraction and redirection is your friend. For example, instead of persuading him not to go outside, start singing an old song and ask about the distant past. Give him a simple task that takes a long time, for example here's a board with 10 screws in it, can you take them out for me please?
Is there anyway you can get your mom to sleep downstairs instead?
posted by SyraCarol at 8:53 PM on March 27, 2019
Is there anyway you can get your mom to sleep downstairs instead?
posted by SyraCarol at 8:53 PM on March 27, 2019
« Older YANMDfilter - what follows a finding of high CRP? | how to business trip, San Francisco edition Newer »
This thread is closed to new comments.
Is there a car that need to be disabled (perhaps by disconnecting the battery)
Is the house rented or owned? Who keeps track of paying bills and who do they go to?
Is there a land line or cell phone, and are they at risk of making financial decisions based on scammers calling them? (One advantage of hearing loss is you can't hear spammers!)
For the doors, there are decorative Shop Keepers Bells that could be added to make noise when the door moves.
posted by nickggully at 5:50 AM on March 27, 2019 [3 favorites]