help my friend Alzheimers-proof his house
February 12, 2015 6:51 PM Subscribe
My friend from this question needs advice and direction caring for his mom in her home. Her dementia is getting steadily worse, and last weekend she went wandering.
The sheriff’s deputy brought her home in the early morning; sometime during the night when my friend was asleep, she had left the house with no shoes or coat on. He is currently living in her house and working from home in order to care for her 24/7, but is becoming quickly overwhelmed. Getting his mom into a facility is not a financial possibility, and there are no reliable family members to relieve him. He can’t leave her alone at all.
Please advise any and all resources I can throw his way; people to call, books to purchase (I’ve already recommended this one, which he’s ordering),
services available for little or no money, etc. He’s looking into special locks for the doors, but what else? He’s also in the process of applying for an adult day care program through VA Tech. My friend has POA now, and his mom has both Medicare and MedicAid. They live in Radford, VA, in Pulaski County.
Thanks!
The sheriff’s deputy brought her home in the early morning; sometime during the night when my friend was asleep, she had left the house with no shoes or coat on. He is currently living in her house and working from home in order to care for her 24/7, but is becoming quickly overwhelmed. Getting his mom into a facility is not a financial possibility, and there are no reliable family members to relieve him. He can’t leave her alone at all.
Please advise any and all resources I can throw his way; people to call, books to purchase (I’ve already recommended this one, which he’s ordering),
services available for little or no money, etc. He’s looking into special locks for the doors, but what else? He’s also in the process of applying for an adult day care program through VA Tech. My friend has POA now, and his mom has both Medicare and MedicAid. They live in Radford, VA, in Pulaski County.
Thanks!
I sent you a private message because I work in the aging field and didn't want to identify my workplace publicly. But I did want to provide some more general resources for anyone else.
Eldercare Locator - Federal program for locating community services for older adults.
National Association of Area Agencies on Aging - another source for finding local care resources.
Alzheimer's Association Community Resource Finder and the Roanoke Chapter of the Alzheimer's Association. (The Alzheimer's Association has a 24-hour help hotline, FYI.)
Hope these help!
posted by Neely O'Hara at 7:54 PM on February 12, 2015 [3 favorites]
Eldercare Locator - Federal program for locating community services for older adults.
National Association of Area Agencies on Aging - another source for finding local care resources.
Alzheimer's Association Community Resource Finder and the Roanoke Chapter of the Alzheimer's Association. (The Alzheimer's Association has a 24-hour help hotline, FYI.)
Hope these help!
posted by Neely O'Hara at 7:54 PM on February 12, 2015 [3 favorites]
Isn't it dangerous to lock a place up tight, in case of fire?
posted by zadcat at 7:56 PM on February 12, 2015 [3 favorites]
posted by zadcat at 7:56 PM on February 12, 2015 [3 favorites]
I remember someone talking on the radio about designing facilities for people with dementia, and the one thing that stuck in my mind was making the doors that go to safe places obvious, and the doors that go to unsafe places as hidden as possible. This reduces frustration, because they get the pleasure of going through doors to "new" and "interesting" places, and aren't angered and thwarted by obvious doors that are locked. So disguise the front door as much as possible from the inside; make the interior doors obvious and interesting; if the backyard is safely and securely fenced in (and not frozen in the wintertime), perhaps make the back door obvious, too.
Along with that, make each room different in some way so that they do feel they're going on an interesting adventure just wandering through the house.
It's a bit of a silly idea, but it might help reduce stress a bit.
posted by clawsoon at 7:57 PM on February 12, 2015 [6 favorites]
Along with that, make each room different in some way so that they do feel they're going on an interesting adventure just wandering through the house.
It's a bit of a silly idea, but it might help reduce stress a bit.
posted by clawsoon at 7:57 PM on February 12, 2015 [6 favorites]
I wouldn't recommend the deadbolt solution due to restriction of emergency egress. In the same situation (wandering Alzheimer's sufferrer) we installed door alarms (not that exact model).
posted by achrise at 8:01 PM on February 12, 2015 [1 favorite]
posted by achrise at 8:01 PM on February 12, 2015 [1 favorite]
Put these locks either very high or very low on doors.
posted by bendy at 8:07 PM on February 12, 2015
posted by bendy at 8:07 PM on February 12, 2015
We had this issue with my grandmother and when we put a lock on the door like the one bendy suggested, and we were told by her daily care-giver that it was illegal as it was obviously a fire hazard. Caring for someone with Alzheimer's is extremely challenging, and your friend is not alone in trying to navigate these waters. I also recommend looking into elder care resources and door alarms versus locks.
posted by dawg-proud at 8:19 PM on February 12, 2015 [1 favorite]
posted by dawg-proud at 8:19 PM on February 12, 2015 [1 favorite]
A simple strategy we had success with was hanging a full height curtain in front of the front door at night. It made the doorway look like anything but a door, and my grandmother never connected that the door was there during the day, but not during the night. Crucially, it would not impede entrance or exit significantly in an emergency.
To keep my toddler in my house, we have also used a cheap, LOUD, door alarm, which needed a code to disarm it, and just installed with double sided tape. They were under 10$ (at Walmart I think, but they are commonly available) each on deep sale, and are not centrally monitored, but were loud enough to wake me if she was to open the door. Again, doesn't impede emergency use of the door...
A medicalert bracelet of some type may also be something to consider, in case she does wander, and is unable to give her critical information.
Good luck to your friend.
posted by Northbysomewhatcrazy at 8:20 PM on February 12, 2015 [10 favorites]
To keep my toddler in my house, we have also used a cheap, LOUD, door alarm, which needed a code to disarm it, and just installed with double sided tape. They were under 10$ (at Walmart I think, but they are commonly available) each on deep sale, and are not centrally monitored, but were loud enough to wake me if she was to open the door. Again, doesn't impede emergency use of the door...
A medicalert bracelet of some type may also be something to consider, in case she does wander, and is unable to give her critical information.
Good luck to your friend.
posted by Northbysomewhatcrazy at 8:20 PM on February 12, 2015 [10 favorites]
You can get battery operated door alarms at Home Depot.
If mom is still able to read/respond to signs, he could put up STOP signs or YOU ARE HOME on the doors, or quilts over the doors.
He could get a baby monitor to keep an eye on her.
Rustle boxes and plenty of shiny activity things strewn in the paths before the door (such as photo albums with pictures of loved ones, a treasure chest with familiar items inside to discover) might distract long enough to wake him up and redirect her.
Sundowning leads to confusion and agitation for dementia patients. What's her temperament like towards the evening? Feeling lost or more confused? A good thing to do, if he can, is gently pursue a line of questioning that gets to the reason for wandering. Does she feel like she needs to go home? Has to go to work? Is worried she has to pick up the kids? Sleep disrupted? If he can understand what's causing the wandering, if it's physiological or psychological it can help fine tune his response, such as adjusting any medications or altering the environment to soothe any anxieties that would cause wandering.
Get him The 36 Hour Day, and get him in touch with his town's elder social worker (if they have one) who might be able to link him up to respite services.
In a worst case scenario, and I know this is not great, but if he can't control her wandering, maybe he could block her door with something just heavy enough so that if she was trying to leave the noise of it would wake him?
posted by Queen of Spreadable Fats at 8:34 PM on February 12, 2015 [2 favorites]
If mom is still able to read/respond to signs, he could put up STOP signs or YOU ARE HOME on the doors, or quilts over the doors.
He could get a baby monitor to keep an eye on her.
Rustle boxes and plenty of shiny activity things strewn in the paths before the door (such as photo albums with pictures of loved ones, a treasure chest with familiar items inside to discover) might distract long enough to wake him up and redirect her.
Sundowning leads to confusion and agitation for dementia patients. What's her temperament like towards the evening? Feeling lost or more confused? A good thing to do, if he can, is gently pursue a line of questioning that gets to the reason for wandering. Does she feel like she needs to go home? Has to go to work? Is worried she has to pick up the kids? Sleep disrupted? If he can understand what's causing the wandering, if it's physiological or psychological it can help fine tune his response, such as adjusting any medications or altering the environment to soothe any anxieties that would cause wandering.
Get him The 36 Hour Day, and get him in touch with his town's elder social worker (if they have one) who might be able to link him up to respite services.
In a worst case scenario, and I know this is not great, but if he can't control her wandering, maybe he could block her door with something just heavy enough so that if she was trying to leave the noise of it would wake him?
posted by Queen of Spreadable Fats at 8:34 PM on February 12, 2015 [2 favorites]
You say a facility isn't financially possible, but in the US, there are facilities that are covered by Medicaid and it can be a huge relief to caregivers and Alzheimer's sufferers alike for them to be in a safe place.
posted by zippy at 8:37 PM on February 12, 2015 [4 favorites]
posted by zippy at 8:37 PM on February 12, 2015 [4 favorites]
It's good he's looking into adult daycare, it will be a huge relief if she can go. Just in case you're able to be there for him in person, or if he has any friends around who can help him, I just wanted to link back to something I wrote in this recent post about things you can do to help a caregiver. From mydementedmom.com:
"'Here are but a few things you can select from:
1. Help clean the house
2. Take over extras from a meal you’ve cooked for your family
3. Do the laundry
4. Do the grocery shopping
5. Pick up medicines from the pharmacy
6. Volunteer to run other specific errands
7. Mow the lawn and/or do other yard work (assuming the person doesn’t use a lawn service)
8. Visit and just let the person talk about feelings
9. Drive the person with Alzheimer’s to their daycare center (if they’re going to daycare)
10. Take the person with Alzheimer’s to the doctor
11. Take the person with Alzheimer’s out for a drive
12. Look after the person with Alzheimer’s in your home for a few hours"
For me, the following helped greatly:
Casseroles and gift cards
A bottle of wine (if appropriate)
Some nice chocolate or ice cream or his favorite treat
A heartfelt card
Offer to help out with any pet stuff, if appropriate
Texts to remind him he is loved, he is strong, he is in your thoughts and he is a good son
posted by Queen of Spreadable Fats at 8:55 PM on February 12, 2015 [5 favorites]
"'Here are but a few things you can select from:
1. Help clean the house
2. Take over extras from a meal you’ve cooked for your family
3. Do the laundry
4. Do the grocery shopping
5. Pick up medicines from the pharmacy
6. Volunteer to run other specific errands
7. Mow the lawn and/or do other yard work (assuming the person doesn’t use a lawn service)
8. Visit and just let the person talk about feelings
9. Drive the person with Alzheimer’s to their daycare center (if they’re going to daycare)
10. Take the person with Alzheimer’s to the doctor
11. Take the person with Alzheimer’s out for a drive
12. Look after the person with Alzheimer’s in your home for a few hours"
For me, the following helped greatly:
Casseroles and gift cards
A bottle of wine (if appropriate)
Some nice chocolate or ice cream or his favorite treat
A heartfelt card
Offer to help out with any pet stuff, if appropriate
Texts to remind him he is loved, he is strong, he is in your thoughts and he is a good son
posted by Queen of Spreadable Fats at 8:55 PM on February 12, 2015 [5 favorites]
We had my dad at home for the last 10 months of his life.
The Alzheimer's Store offers a number of items that may be helpful, in particular, a wandering category. We used the confounding door lock on a couple of doors, and they were quite easy to install and learn how to use. We also used these plastic door knob covers; others in this situation have concealed doorknobs using flower baskets. I don't know what a code inspector would say, and I don't care -- they added mere seconds to any exit for a person of normal intelligence, and my toddler grand-nephew figured out the plastic knobs (squeeze and turn) the very first time he encountered them. My dad never did.
To keep my dad out of the kitchen -- with his frontotemporal dementia, he might eat anything in quantity -- we simply installed a $20 screen door with a hook lock (later we needed to move it higher up so he couldn't fumble around for it). Some 2x4s and L-brackets provided the temporary frame. We did the same for the living room, so my mom could have a private space he couldn't invade.
there are facilities that are covered by Medicaid
The spend-down of any common assets is a problem here; a spouse might have to sell their house, for instance. There's also a five-year look-back so it's extremely difficult to plan for. He's probably going to have to face selling her house to get her placed. Ultimately a wandering dementia patient is going to require a locked facility, and that is spendy. In any case, her caseworker should be able to help him locate an open bed someplace nearby. There can be waiting lists, but the caseworkers have access to that information.
posted by dhartung at 11:08 PM on February 12, 2015 [5 favorites]
The Alzheimer's Store offers a number of items that may be helpful, in particular, a wandering category. We used the confounding door lock on a couple of doors, and they were quite easy to install and learn how to use. We also used these plastic door knob covers; others in this situation have concealed doorknobs using flower baskets. I don't know what a code inspector would say, and I don't care -- they added mere seconds to any exit for a person of normal intelligence, and my toddler grand-nephew figured out the plastic knobs (squeeze and turn) the very first time he encountered them. My dad never did.
To keep my dad out of the kitchen -- with his frontotemporal dementia, he might eat anything in quantity -- we simply installed a $20 screen door with a hook lock (later we needed to move it higher up so he couldn't fumble around for it). Some 2x4s and L-brackets provided the temporary frame. We did the same for the living room, so my mom could have a private space he couldn't invade.
there are facilities that are covered by Medicaid
The spend-down of any common assets is a problem here; a spouse might have to sell their house, for instance. There's also a five-year look-back so it's extremely difficult to plan for. He's probably going to have to face selling her house to get her placed. Ultimately a wandering dementia patient is going to require a locked facility, and that is spendy. In any case, her caseworker should be able to help him locate an open bed someplace nearby. There can be waiting lists, but the caseworkers have access to that information.
posted by dhartung at 11:08 PM on February 12, 2015 [5 favorites]
Please tell your friend to get his mom an ID bracelet or necklace if she doesn't already have one, and consider enrolling her in a program like the Alzheimer's Association Medic Alert Safe Return. It's very inexpensive and has an 800 number anyone who may find her could call to help get her home. There's also a version with GPS tracking called ComfortZone.
The Alzheimer's Association has great resources on how to plan for (and, to some extent, prevent) wandering, here and here. One good way to lessen wandering is to keep her busy, so any projects or "jobs" she can do around the house are useful tools. Helping with housework, like sweeping or folding laundry, is a good one.
Alzheimer's Association has a 24 hour helpline that is totally free, and the local chapter will have lots and lots of free resources, too. 1-800-272-3900
posted by assenav at 12:24 AM on February 13, 2015 [2 favorites]
The Alzheimer's Association has great resources on how to plan for (and, to some extent, prevent) wandering, here and here. One good way to lessen wandering is to keep her busy, so any projects or "jobs" she can do around the house are useful tools. Helping with housework, like sweeping or folding laundry, is a good one.
Alzheimer's Association has a 24 hour helpline that is totally free, and the local chapter will have lots and lots of free resources, too. 1-800-272-3900
posted by assenav at 12:24 AM on February 13, 2015 [2 favorites]
There should be access to Project Lifesaver in your area. They provide ID bracelets that have a GPS tracking device, so in case she does wander off, local law enforcement can find her quickly.
There are different groups affiliated with Project Lifesaver that can provide the service free or at a low cost. I would contact your local police department for more information.
posted by slipthought at 5:23 AM on February 13, 2015
There are different groups affiliated with Project Lifesaver that can provide the service free or at a low cost. I would contact your local police department for more information.
posted by slipthought at 5:23 AM on February 13, 2015
I'm very sorry your friend is in this situation.
The short answer is you can't make a home "Alheimer's Proof". His mom can, and will, get into everything and anything. Your friend will end up spending all of his free time following his mom around, making sure she doesn't get into anything, and then dealing with her anger at him. I have a bit of experience with this situation.
His mom is wandering, and that's a very dangerous situation. She is also probably losing her sense of time of day, which means she is going to end up wandering around the house at all hours of the night, getting into anything not bolted down. Your friend is very quickly going to become sleep-deprived and extremely stressed, which only makes the situation even more dangerous.
Adult day-care is an option up to a point. If his mom is too bad off, a lot of day-care places won't take her in. She would simply be far too taxing on the staff and disrupting to the rest of the adults there.
He really needs to seriously begin the steps to get her into a memory-care facility, where she can be safe and cared for 24-7. It's best for her and your friend.
posted by Thorzdad at 6:43 AM on February 13, 2015 [3 favorites]
The short answer is you can't make a home "Alheimer's Proof". His mom can, and will, get into everything and anything. Your friend will end up spending all of his free time following his mom around, making sure she doesn't get into anything, and then dealing with her anger at him. I have a bit of experience with this situation.
His mom is wandering, and that's a very dangerous situation. She is also probably losing her sense of time of day, which means she is going to end up wandering around the house at all hours of the night, getting into anything not bolted down. Your friend is very quickly going to become sleep-deprived and extremely stressed, which only makes the situation even more dangerous.
Adult day-care is an option up to a point. If his mom is too bad off, a lot of day-care places won't take her in. She would simply be far too taxing on the staff and disrupting to the rest of the adults there.
He really needs to seriously begin the steps to get her into a memory-care facility, where she can be safe and cared for 24-7. It's best for her and your friend.
posted by Thorzdad at 6:43 AM on February 13, 2015 [3 favorites]
Door alarms that chirp when the door opens work wonders. You don't need a full on ear splitting alarm, just something loud enough to let you know the door has been opened. An announcement box in the attendant's bedroom is also needed. Separate chirping alarm on the bedroom door or motion alarm in the bedroom can be good for night. Wearable GPS is great but will they wear it? We looked into GPS shoes for my dad as a solution but he quickly progressed past the point where they were needed. Our issue was always feeling one step behind, solving last week's problem etc. Anyway, if you go with the shoes replace all the shoes with GPS shoes. Of course, this won't work if they leave the house without shoes.
posted by caddis at 9:33 AM on February 13, 2015
posted by caddis at 9:33 AM on February 13, 2015
Wearable GPS is great but will they wear it?
Generally, if it isn't something they are used to wearing, it's probably going to come off, and then lost. Even things they are used to wearing (like a wedding ring, dentures, etc.) will often suddenly go missing. It really is like being at least one step behind. I liken caring for an Alzheimer's victim to herding cats.
posted by Thorzdad at 9:47 AM on February 13, 2015 [2 favorites]
Generally, if it isn't something they are used to wearing, it's probably going to come off, and then lost. Even things they are used to wearing (like a wedding ring, dentures, etc.) will often suddenly go missing. It really is like being at least one step behind. I liken caring for an Alzheimer's victim to herding cats.
posted by Thorzdad at 9:47 AM on February 13, 2015 [2 favorites]
I have thought that those little RF based chips would be good for tracking people who have AZ and Autism. The Tile is one, however it works better when more people buy in to the app. Maybe you can ask your local PD and FD to install the app on their smart phones. Then you can use the tile simply by clipping it to a piece of clothing. Unfortunately the Tile is BT and limited to about 100 ft range. Still, kids with Autism tend to stay close, but hide.
posted by Gungho at 9:54 AM on February 13, 2015
posted by Gungho at 9:54 AM on February 13, 2015
We used a Miller trust to allow my Mom to go to a long term care facility, paid mostly by Medicaid. There was a point at which we simply couldn't care for her properly and safely any more.
posted by SJustS at 9:28 AM on February 14, 2015
posted by SJustS at 9:28 AM on February 14, 2015
Response by poster: Thanks for all the responses; sorry I haven't followed up yet but I'm waiting to hear from my friend, who is "herding cats" 24/7. I can relate to the feeling of being one step behind; my M-I-L quickly succumbed to dementia a few years back, and though we tried our best we were just never able to catch up in time. I also have my doubts about wearable GPS; unless it's sewn into their nightclothes it's probably going to be removed and lost. It seems that anything that causes annoyance or confusion gets ejected.
posted by Koko at 7:06 AM on February 19, 2015
posted by Koko at 7:06 AM on February 19, 2015
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posted by Johnny Wallflower at 7:37 PM on February 12, 2015