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Just moved 85 year old MIL from IL to AFH for memory care.


When she was at IL she would walk to a grocery store 2 blocks way. Her dementia worsened and IL asked us to move her. We moved her in one afternoon into a care home so she will be safe and with 24/7 care.


She doesn’t comprehend the move, we made up some stories about why she can’t go back to her studio that she seems to buy into. However now she says she wants to go shopping, needs her credit card ( which we took away, on the advice of the care home ).


Of course she shouldn’t and couldn’t go shopping. The care home is in COVID lockdown under state order. But she doesn’t understand it.


It’s sad that she has no idea that because of her wandering behavior, she is being locked in MC for the rest of her life. Even without COVID restrictions, no one will take her shopping. We are remote caregivers. The rest of the family in the area is estranged and will not even visit, let alone taking her shopping.


She’s asking to get her credit card back so she can go shopping. She’s going to walk out to find a grocery store although she has no idea where she is. She doesn’t need to buy anything. She just wants to go out.


This obsession about shopping worries us. I feel this is a time bomb eventually will explode. She’s on relatively good behavior at her new care home but at some point this is going to explode.


Any advice? Similar experience?

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Thanks everyone for your answers. MIL’s demand to go shopping is part of her exit seeking behavior. She’s also been talking about finding a new place to move to where she can walk to store, cook her own food etc etc. In her mind she’s fully capable of doing all these things but in reality not at all. I need to ignore all these “demands” and then just let it go and let the staff caregivers handle it. She ain’t going nowhere because the place is locked. I think she might get angry at some point in the future but then I need to remember caregivers are experienced in dealing with situations like that.
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She could go window shopping, but not with much cash or credit cards, and not alone.
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My father constantly asks me for cash. He has absolutely no need for cash, there is nowhere to spend it, but he has had cash in his pocket his entire life. Fortunately, I can send him a handful of singles to 'scratch the itch.'

Your mom's obsession is a bit tougher. First, I think I would send her an expired credit card (unless you think she has the ability to call the number on the back and have it reinstated - maybe get out your Sharpie just in case). That may mitigate some of her obsession.

Often, memory care communities have a circular (enclosed) outdoor path. If your mom's does, I'd ask the staff to take her out there when she is asking to go shopping.

She is living with a staff that has seen everything. Try not to worry too much about what she MAY do. Try to prevent what you can, but then let go and cross that bridge IF you come to it.
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Ludmila Jan 2021
Thank you! You are right! we will let the staff/caregivers take care of it from now.
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Imho, perhaps you could mail a few dollar store items to her and say something akin to "I went shopping for you."
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I have lived in assisted living for 5 years due to caring for a husband and some physical limitations. I have no dementia and still drive. Never had a wreck or a ticket. Eyesight and hearing are excellent.
After seeing what happens to the residents who are put in memory care, I have drawn up papers instructing my attorney that whoever makes a decision to put me in one of those places will be cut entirely from my will. Unless you have lived in one of these places, you have no idea what goes on behind closed doors. After residents are put in memory care, I have seen them brought upstairs for a few activities like listening to music. They had no makeup, their hair looked like they just got out of bed, their clothes were disheveled, and they had a frantic look on their face. Their rooms have a bed and a chest and a closet. There is a bathroom. So no refrigerator or sink. No place to keep bottled water or other drinks or snacks or anything else. And they can’t get out for any reason. Like being in jail. And you have no idea about how they are being treated, because they can’t tell you. Some of them have no phone. So no contact with the outside world. I overheard a family member calling the front desk person to see how their mom was doing because they had no contact with her for a month. The facility had not called the family to give any updates. Cameras are not allowed. The caregivers, licensed CNAs, only have to have a high school education and two weeks of training. The Med Techs have an additional 2 DAYS of training in how to give meds. The LPNs have a high school education and one year of training. There are rarely any RNs (who have a college degree). So no family visits during Covid. No inspections by the health department and Department of Community Health. And Covid is rampant among their residents who are in close daily contact with staff and other residents.
No thanks. I’ll shoot myself before I will allow anyone to stick me in there. Yes, your loved one would like to go shopping. She has completely lost her freedom. If there is anyone who you could get to take her after lockdown restrictions are lifted, get them to do it. And have others (you may have to hire) take her out of there every day, even if it’s just to sit outside in the sunshine.
No one wants to live trapped in a tiny space, cut off from the world, given activities appropriate for a two year old, and given dog food to eat. AND suffer verbal and sometimes physical abuse. I’ve seen it all. It’s so sad. We as a society throw our elders away in these places and hope someone else will take care of them. Some families never even bother to visit. Others come once a month. It’s heart breaking to watch. I will fight scratching and clawing every person in sight to avoid being put in one of these abusive settings. I wish you luck. More importantly, I wish your loved one luck.
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Ludmila Jan 2021
We have visited memory care facilities ( inside some fancy AL place ) and found it too depressing and institutional, as you described. Although the caregivers seem friendly, the patients in there are so out of it, they don’t even make eye contact with us or acknowledge our presence.

that’s why we’ve selected a small 6 person care home, people are sitting around together having their meals, watching TV. One of the patients came over gave the caregiver a big hug while we were visiting and said hello to us.

she has lost her freedom and it’s done in the name of safety. Should we have left her wandering the streets to get hit by a bus or take a fall and break a hip, or standing in the cold freezing snow shower behind a dumpster? Sometimes I wonder if we could’ve waited until such disaster happens then the transition into MC would be easier? Anyways it is the family’s unanimous decision to act now. Dementia is a terrible disease. Covid has made it much worse.

In a way she’s getting a life she deserves. My MIL has done some serious damage to the relationship with her children in the past and nobody will take her in because she’s always been selfish, self centered, and arrogant. Her other children never visit and do not like her but can’t stomach the thought turning her over to the state ie Adult Protective Services. So we did our best finding a care home for her and it’s paid for with her money, at she runs out of money she’ll go on Medicaid.
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What I would try:
1. Tell her stores are closed now and offer items in a catalogue instead and then immediately open to a page that might interest her.
2. Give her an old, outdated 'credit card' - or some plastic card with numbers on it that is meaningless.
3. Call someone and have them 'answer' as 'the store' and she can talk to that person. The person on the phone can tell her that the store is closed - and refer back to the catalogue.
4. Walk with her as if you are leaving and re-direct her back to her room. She likely will forget what or where she was intended / intending to go.
5. Redirecting helps and is an effective tool. She will forget immediately.
6. Whatever attracts her interest - even from years ago - birds, photography, colors, flowers, pets (you can get an animated cat that is soft and purrs when petted and is very effective in locked dementia facilities). If the cat works, tell her the cat needs to be petted for a while and then we'll go to the store.
* There is no specific strategy or way to do this although TEEPA SNOW, one of the country's leading experts on dementia, has very helpful videos. (I studied on-line with her / webinars for two years).
*** Let us know what works so others can try it too. Gena.
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I agree with the person who posted about a mock grocery store. I have seen that done on TV in the Netherlands, and it seems to work great. Even if the home isn't equipped or willing to do that, maybe once Covid is over, a volunteer from the Alzheimer's Association or a church group or Area on Aging, could come to your mom's room with a few things for her to choose from, things even from the Dollar Store, that could make your MIL feel like she's shopping. Maybe people in your family could reimburse him or her, or maybe, for the few dollars that is would cost them, they'd be willing to donate the items and their services. We took care of my mom for 5 years when she had Alzheimer's. I even wrote a book about our travails called, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." my mom loved to get out, so we'd make daily trips to the store, just to let her see other people, and I'd buy something, like a roll of paper towels, (a commodity sometimes, these days, with Covid,) Best of luck.
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she may need to be moved to a skilled nursing facility (SNF); assisted living (if that is what AFH means), does not have the means to do 24/7 care. If this is a SNF, it should be under lock-down so nobody can leave without their authorization and supervision. A doctor there will probably put her on medications to control her urge to go out.
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disgustedtoo Jan 2021
AFH = adult family home

Some specialize in MC. Since the mother can't leave, one can safely assume that this is a locked down place.

FYI, my uncle was in a SNF and it was NOT locked down. We didn't have to go through hoops and hurdles to visit him. If someone has dementia and other medical needs that require Skilled Nursing, then there should be a special area that IS locked down to prevent wandering.
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She should get to go shopping as soon as the covid lock down is lifted.

In the meantime help her do a little shopping on line.
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disgustedtoo Jan 2021
OP isn't local ("We are remote caregivers.") - kinda makes it hard to "help her do a little shopping on line."

Let her go shopping when lock down is over?
"Her dementia worsened and IL asked us to move her."
"...because of her wandering behavior, she is being locked in MC for the rest of her life."
If she wanders, she will get lost and could die. Great suggestion.

A little lookup shows the facility (AFH, aka adult family home) is a smaller home-like facility. They likely don't have enough staff to take every person who wants to go gad about out.

Op also mentions that local family isn't likely to take her out ("The rest of the family in the area is estranged and will not even visit, let alone taking her shopping."

She's also only just moved. It can take time for some to "settle in." Some never really adjust to this move, but it is done for their safety. The lock down for the virus will likely be in place for many more months or longer, esp for elders.

If possible, when the lock downs end, they could try hiring someone who could take her out, but you have to be very careful who you are choosing, and not being local makes that hard to do. Also note - my mother would often express desire to get out and about, even before the move to MC. But, even a very short trip somewhere took a lot out of her. She would often say it was nice, but next time go without me.
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With covid, everything is different and more difficult for everyone. Your mother may not understand what is happening to her, but hopefully she'll be able to endure it. Memory care facilities try to have activities and onsite entertainment, and in better times, they even take people out on field trips, but they are limited now by covid restrictions. Later, as things get better, if you are too far away to visit her often, can you hire an aide to spend time with her (maybe 3 hours twice a week), to take her outside, and maybe even take her shopping? People with dementia have good days and bad days, and her abilities may continue to decline. Your mother sounds alot like my mother who now has advanced dementia. My mother was also a wanderer. She didn't realize that her capabilities were declining and couldn't understand why she needed to be in memory care. MC was a difficult adjustment for her. She tried to cut off the tracker ankle bracelet that they put on her, and has "escaped" a couple of times from the locked unit (she set off alarms by the outer door, and never got out of the building). As her dementia got worse, she forgot how to walk and that was the only thing that solved the urge to wander. She's now using a wheel chair and is taken everywhere. She can't feed herself. When she moved to memory care I took away her credit card and had all of her financial statements sent to my address. Prior to that I put low limits on the credit card. I handle all of her finances. Before Covid, I could take her shopping and to restaurants until she got to the stage where she lost her table manners and no longer wanted to go places. Then I would just take her out to the building's patio where we could sit outdoors for a few hours. My mother got to the point where going to the hospital became an issue. The facility had to send her to the hospital every time she had a fall. She bit the nurses and didn't understand why she was there or why the nurses were "bothering" her all the time. We changed her medical directives to "no hospitalization" hospice-type care. She has actually done better with less aggressive medical care.
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Ludmila,
You're worrying about something that hasn't happened yet. Try not to worry.
I suggest that you speak to someone at the facility to hear their policy/approach if this occurs.
If your Mom is safe where she is, that should provide you comfort.
If you're able to speak to your Mom and she brings up shopping, perhaps telling her that you will purchase what she needs and send them to her.
Unfortunately this pandemic has made life in general difficult for everyone.
Best wishes to you and Mom.
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Ludmila Jan 2021
Thank you! I think we’ve conditioned ourselves to worry, before we moved her to MC she was in IL and for the last couple of months we got so many calls from IL about all sorts of behavioral issues, IL can’t take care of her. Now she’s under 24/7 supervision we can finally exhale a little.
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My mother is in MCF with moderate to advanced AZ. Pre covid I took her shopping on occasion. She was fine looking at everything in the store and after an hour she was tired. But she has a similar obsession about money and concerned she was not able to buy things and had no money so I made sure she had her purse and i put expired and cancelled credit cards in her wallet. The staff also told her she is at an all inclusive place so meals and everything are included. Obviously mom forgets and asks the same question a day or so later but after a few months, she stopped obsessing and only asks occasionally. They also had a woman come in at the IL near her who sold costume jewelry so I would take mom there as well. And got her MCF to “sell” donated costume jewelry and rsidents pay with fake money or poker chips. That is pretty popular but suspended with covid. But everyone is different and has different abilities so some residents are not able to go out to a store. My mom is physically very mobile and very compliant if I am with her so it works.
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Could you purchase items and mail them to her? Even leave the items in the store bags. Maybe she'll think she went shopping!!
Good luck!
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Mares1155 Jan 2021
That’s a great idea!
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Is there a way that they can make a small area of the Home into a "store"
Residents, not just her can "shop" for things.
Take items from lost and found or items left by past residents.
Cans of soup, shampoo, plates, all sorts of things and let the residents shop.
Eventually these items can be picked up from the rooms and put back in the "store" so they can be shopped again.
Just like many facilities have "cafes" where a resident can order a coffee or tea.
Or some have movie theaters and serve popcorn.
This might be a way to give another task or project to some residents.
If this is not possible then just telling her that the "Store is closed today" will have to be the got to answer.
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RedVanAnnie Jan 2021
I love that idea.
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At some point she will get so angry she can’t get out but hopefully the
care home will know how to distract
and calm her. It’s all about being frustrated and fear of losing control
and Who can blame them .
hopefully when everyone vaccinated
you can hire private caregiver to take her out shopping /lunch couple times/week . You may even find someone at the home willing on their days off or ask suggestions.
might be idea to start looking now.
pity no family / friends nearby .
good luck
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This is an easy one - tell her the store is closed "today". And possibly give her catalogs and pretend you will order for her - but don't. Tell her the car is broken, or you can't walk (pain), etc. And never let her have a credit card. Pretend you ordered items. She will forget. Just stand firm and ignore the behavior.
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jacobsonbob Jan 2021
If there are items she needs or could use, you could bring a computer and help her select an item from eBay, Amazon, etc. so she can have a real shopping experience. Of course you wouldn't want to give her unattended access to the computer, but perhaps this would allow a real shopping experience--except that she still can't go outside to a brick-and-mortar store.

I wonder if, in some cases, it is more of a desire to go outside. Depending on the weather (and the level of "lockdown"), perhaps the staff could take some of the residents for a walk (or a ride in a wheelchair) around the building so they can see grass, birds, trees, the sky, etc. (as cindybrownlbsw has suggested)--perhaps that would be sufficient for some, especially those who have always had an interest (or a career) in nature.
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Seems in your situation COVID is the biggest obstacle in reality! What about a non-medical caregiver (companion) to spend some one on one time with her? Some of the facilities in our area are allowing my staff to visit ONE Client, go outside for walks, picnics, etc. We follow COVID smart rules but still try to offer quality of life. It's amazing what a few hours a week of undivided, one on one attention can do for a person with dementia! Of course, nothing is "solved", but nothing ever can be "solved" with dementia - but we can make things better for the moment. There is a lot of love and quality in that.
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I do know that my mother's MC unit DID take residents out for various activities. It was optional, so only those who expressed interest were taken. Obviously that stopped with the virus, but it does depend a lot on how far along in dementia they are, and what activity is being proposed. No way would you just take them to a store and say have at it. There would have to be enough staff to monitor/follow those who did go.

Whether OP's mother's residence would do that, if/when it is safe to do is up to them. Every place will have their own protocols.

If she might feel better having a CC in hand, options are a Debit card, with little or no funds initially (since it can't be used - but these may require being tied to an account with a minimum) or some kind of phony or canceled CC. She likely won't know the difference. Just "having" the card may help settle her down a bit. Perhaps get some of the "fake" money you can get online (they have some good ones out there!), so she can have some "cash" in her wallet/purse too. It might make her feel a little more "independent."

Trying to explain the lock down is going to be tough as well. Just before the lock down, I only told my mother there was a bad flu going around. They understand the flu. She said she wasn't sick, but I would periodically remind her the flu was still going around. For the most part she bought that.

Given that your mother only recently moved, it will take time (no way to know how long) for her to adjust. Various fibs about why she's there, why she can't go out, reassurances, etc are about all we can do. She won't retain what was said, so try various explanations and reuse those that work best!

I do like the idea of having a "store" in house, that they can "shop" at. It sounds like the place your mom is in is very small, so that's likely not an option, but perhaps they could incorporate a cart with various items the residents can "buy", small things that might appease the need to "shop." Think of those vendor carts in malls, etc or food trucks that go to various sites. They could have it available all the time or bring it in maybe during morning and afternoon snack time, so the residents can "buy" their own snacks and "needs."
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Sadly, if she's in MC, her shopping days are over. A grocery store can be a very confusing experience and result in sensory overload. So much to choose from, so many people, waiting in check out line, could result in anxiety and unpredictable behavior. The experience could be very embarrassing for her escort. I think her chances of “exploding” are more probable if she's taken out of MC than her not going shopping.
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jacobsonbob Jan 2021
I'm blind in one eye, and I find certain areas of a supermarket somewhat overwhelming, such as the area in which vitamins are sold, with the thousands of rather similar containers.
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Ludmila, my mother just turned 94 yesterday & also moved into MC from the regular ALF section of the place she lived in for 4 years prior. She too can't just 'leave' the grounds, the doors are locked for her own safety. Of course the Memory Care doesn't take the residents out shopping, even when covid is not an issue. How can a MC possibly handle dementia & Alzheimer's sufferers out in a public place like a store????? Neither of our mother's need a pre paid credit card, or a credit card of ANY kind...........everything is taken care of FOR them where they're at.

They don't comprehend a lot of things anymore. Their world has been purposely shrunken down FOR them so things aren't so confusing any longer. Last night my mother called to ask me if she was coming to my house or if we were taking her out for her birthday? She does this periodically; she gets confused and thinks she lives with me; that she's coming here to sleep, and things of that nature. I just tell her that covid is at play, that nobody is allowed in or out of the building at the moment, and that's that. Restaurants are closed, too, and nobody's going anywhere. This has been going on since last March, so my stories to her have been the same since then. She will be vaccinated for the first round tomorrow, then again on 2/12 for the second round.

Unfortunately, as we all know, life won't be getting back to 'normal' for quite some time after all the vaccines are administered. We will continue to tell our mothers that restrictions are in place etc, when they want to leave their Memory Cares, and that's the best way to deal with things.

I don't know if things will 'explode' with your mother..........I think in time they acclimate to the new way of doing things. Also, as they decline, I think the need to shop and do certain things fades away. If not, you can always remind her about the virus and the restrictions that go along with it, which WILL continue for quite some time to come. Everyone's hands are tied with regard to that. As far as shopping goes, it's doubtful her MC takes them shopping ANYWAY, virus or no virus, but you may want to ask the Exec Director about their protocol on that, then you will know where they stand and how to come up with what to say to your mom down the road. In any event, the staff should be dealing with her questions on the matter of shopping!

Wishing you the best of luck in an ever changing and difficult situation.
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You will have to tell her the absolute truth about her own life. Will she mourn that, be angry? Yes, perhaps. Isn't it worth mourning, worth rage that she has come to this. But this is where she is, and now actions must be taken for her own protection. She may adapt better when shopping trips are possible. Her POA should arrange now for a prepaid card that the POA refills for her as needed, a sort of debit account. While she can manage that she can use it when shopping trips resume. You know, once vaccines are administered and our elders are safer they will have more options; that is true for us all.
She may, of course, not remember your explanations. Continue to make them, and have her new home assist in reinforcing it. Don't expect happiness right now; that isn't realistic. Don't fib and don't delay telling the truth. Clearly that isn't working well at all. I wish you the best of luck and so admire that you have done the heavy lifting to get this move made for her own safety.
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Ludmila Jan 2021
great idea to have the POA setting up a prepaid card. I think she feels insecure without a card so maybe sending a prepaid card to her will make her feel better.

not sure if she’ll ever get to go shopping again. when she’s living in IL, all shopping trips were canceled because of COVID. She walked to a nearby grocery store which is against COVID safety rule of the facility ( supposed to quarantine 14 days after any outing ).

don’t know if we should tell her the truth about her being in MC. She thinks she’s 100% healthy and there’s nothing wrong with her. She was told she had dementia a while ago, but she denies it and becomes angry. The advice we’ve seen is to not tell dementia patients they have dementia so we haven’t discussed it since.
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This reminds me of the nursing home that was set up to look like a community -- https://www.countryliving.com/life/a39630/nursing-home-tiny-houses/

This is where so many of these nursing homes could get more creative to ensure their residents feel a small sense of normalcy.
I wonder if you could ask the nursing home people if they could set up a small "grocery store" in a spare room where folks could go to shop for a few small items like Kleenex, mints, combs, or an orange or apple to have with their lunch. They could issue a small community "credit card" residents could use.

Work with the nursing home to find creative ways to satisfy your mom's desire to shop or feel busy. Sometimes the best ideas come from the families.
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Ludmila Jan 2021
She is in a care home with 4 other patients. We checked out bigger MC facilities and I didn’t see any “fake” shopping area.
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