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?
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.
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.
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.
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.
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.
In the meantime 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.
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.
Good luck!
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.
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
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.
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."
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.
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.
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.
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.