Assisted Living Homes - A Cautionary Tale

Regular readers may know that my mother has been living in an assisted living home since January of 2008. Making the move to the AL home was agonizing for her and everyone in our family. Previously, my mother had been living still in the same house that she had been born and raised in, the house her husband, my father, moved in to when they were married, where all of us kids were born and raised.

We had a difficult time finding a place for her - the choices are limited in southwestern Pennsylvania. And while my mother is fortunate to have enough money to afford some reasonable care, she is not a woman of unlimited wealth, so cost was a concern. We felt lucky to find a place that seemed reasonably good not far from her home, which meant that her friends and relatives could easily visit her there on occasion, and we could stay at the house when we came back to the area to spend time with her. Also, the proximity meant we could think about bringing her back home for short stays on holidays and other special occasions.

But when you are used to living in your own home - the very same home, the very same place - for 79 years, it is a real struggle to make a move like this and relinquish your autonomy. There is so much that you have to give up, so many things over which you lose control. Naturally, you are going to resist this process, and fight to retain control over as much as you possibly can.

If you are the adult child, this is where your responsibility kicks in. And believe me, it kicks in hard.

One of my strongest memories from childhood is of watching my mother write out bills and balance the checkbook. When my father would come home from work with his paycheck, he just handed it over to my mother. She was the one responsible for steering the financial ship of the family. She knew how much money we had, what we could spend on this or that; she knew how to budget to feed and clothe a family that included her, her husband, six kids, and her father. She was the one who taught me how to manage a checkbook. When we were little, we kids loved to be taken along on grocery shopping trips - it was an excursion, a trip outside the house and the small town we lived in to a somewhat less small town nearby. The groceries were paid for with bills that came from the wallet in my mother's purse.

My mother's purse went wherever she did. To church, to bingo, to weddings, to family reunions, to Girl Scout meetings, to high school football games (we were all in the band, and she was a Band Booster). It always held her wallet, a handkerchief and/or Kleenexes, some gum, a nail file, loose change, a pocket mirror, her compact, lipstick, rosary beads, maybe a ketchup packet or two she couldn't bear to throw away, a sewing kit...and many other treasures. The particular purse might change with the event or the seasons or the years, but there was always Mom's purse. The wallet was jammed full of change, bills, various store credit cards and her charge and bank cards, and tons and tons of pictures. Pictures of Dad, of us kids at various stages throughout our lives, and lately, many, many pictures of her great-grandchildren.

When it came time to move to the AL home, mom wanted to take her purse with her. My first instinct was to say absolutely not. "You won't need it there," I said. Which, of course, was an incredibly hurtful, if true, thing to say to her. I am her power of attorney, I take care of all her bills, she doesn't need money at the AL home - there is, essentially, no financial need for her to have a purse there.

But. There was a psychological need.

The purse was part of her identity, it seemed to me then, and seems to me now. She could not bear to give it up, and I could not bear to take it away from her.

What I did do was remove all the credit cards from her wallet. I left her the Medicare card and the Bluecross card, which seemed reasonable, since when members of the family come to take her to doctor's appointments, they need those cards. And I left her her driver's license which, at the time, seemed harmless.

What we argued about was the bank debit card. We have a joint checking account into which all her monthly income goes, and out of which I pay her bills. She wanted to keep her debit card on the account, so that now and then, if someone took her out to dinner, she could pay. There was an advantage to having it there with her - when my siblings came to visit, they could use it to go buy things that she needed there, like groceries she wanted to keep in her room, or other personal items she needed or wanted. Still, I felt uneasy about having it there. My siblings and I had some limited discussion about this - should we keep it at the house? But the house is unoccupied - what if someone breaks in? In the end, Mom was adamant that she wanted the card with her, and I caved, because I couldn't bear to take all her autonomy away from her.

Well, you know where this is going. Sometime late on Tuesday or early Wednesday, someone stole my mother's wallet from her purse, and then used her bank card to make several purchases in stores at a nearby town. My hat is off to PNC Bank, for they immediately identified the purchases as inconsistent with the pattern of activity on my mother's account, and they phoned me this evening to question whether the purchases were authorized. There follows the usual: cancel card, file formal protest of fraudulent purchases (though you have to wait till they actually post to your account, not just listed as "pending"); file police report for stolen wallet; contact credit bureaus for fraud report. I also have to work on replacing her driver's license, Medicare card, and insurance card, and follow up with the credit bureaus to file an extended fraud alert once I get a copy of the police report. I will also be calling my mother's investment advisor to alert him to the potential for fraud.

All this could have been adverted if I had just absolutely insisted to my mother that she not have her purse with her at the AL home, or at least not have her wallet in it. If you are faced with the prospect of moving one or both of your parents into assisted living, DO NOT GIVE IN to sentimentality! Do not leave them in possession of their financial and identity documents, no matter how alert and sound of mind they seem to be. It only takes a minute for an unscrupulous aide to slip into a sleeping resident's room and pilfer their wallet. And, it doesn't even have to be an aide. There are people who target assisted living homes, who study their hours and activities and know the uniforms people wear and the patterns of activity. I know how things work at my mother's place and it would be as easy as pie to slip into that place and steal something.

I knew I should not let my mother have her wallet there, and I did it anyway, because I didn't want to have "the fight" about her autonomy. Now I wish I had had that fight. Because now, here is what I am faced with. I can protect her credit, and her finances, and replace all her lost cards. But what I can't restore to her are all the lost family photos. And I can never, ever, ever give her back the sense of trust she had in the people she relies upon to help her every day in dealing with the most intimate daily details of her life - going to recreation, dressing, bathing, taking medications, eating, toiletting.

In retrospect, I'd much rather have had the difficult discussion about giving up the purse - and all that means - than trying convince her now that things will be okay.

If you have a similar situation to deal with in the future, I urge you not to let your loved one take their financial and/or identity papers with them into an assisted living or nursing home situation.

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Thanks for sharing this, Zuska. We all need to think about these things that we don't want to think about, so that we can be prepared when the time comes. Good luck with all the hassles!

Thank you so much for your insight, Zuska. As it happens, I will need all the advice on this matter I can get, and soon.

My father was recently diagnosed with dementia (most likely Alzheimer's by the clinical presentation). He is only 70 and worked as a research physicist for over 40 years, so he is used to having a brain that works. This is going to be so heartbreaking as well as a logistical nightmare. At this point he can still live at home (he doesn't live alone) and do most of his usual activities (except for driving). But, when will it be too dangerous for him to maintain the swimming pool, to swim unsupervised, to work with tools?

His neurologist recommended a book, The 36-Hour-Day, which I am reading. At this point it only panics me more (which the neurologist warned me would happen).

We're looking for AL facilities in the Dallas-Ft. Worth area; the cost is breathtaking, but we think we can swing it if we make some changes.

Anyway, thanks again and all the best to your mum. I'm so sorry about her wallet *tears up uncharacteristically*

SKM my grandparents are in Edgemeer in Dallas and are pretty happy there.

By katydid13 (not verified) on 06 Aug 2009 #permalink

Ugh. I can't imagine living somewhere where everyone around you has access to all your stuff. How horrible. Thanks for sharing the story Zuska, very enlightening. It will hopefully be a very long time before I have to consider that for my parents, but still.

By Katherine (not verified) on 06 Aug 2009 #permalink

SKM, I just re-read your post. My grandfather was also a physicist and we have the same struggles. It was heart breaking to hear him tell my mom "he's not as smart as he used to be."

By katydid13 (not verified) on 07 Aug 2009 #permalink

SKM, I am so sorry that you have to deal with this, and so sorry for your father. Glad to hear you are getting some help and advice from the doc.

Katherine, they have to have access to your stuff, because they have to be able to help you with your puts you in a horribly vulnerable situation. It's really a heartbreaking betrayal in many ways because the region is so small and isolated and sparsely populated, everybody sort of knows everybody and half the time is related or went to school with each other and there are a lot of interwoven connections...the people taking care of you in the AL home likely know and are connected to you and your family in some way. So it seems worse, some how, than being ripped off by strangers.

Sorry to hear about your mother.

As you wrote, the photographs are a greater loss than the money as they're irreplacable.

By Chris' Wills (not verified) on 07 Aug 2009 #permalink

Thank you for posting this. A number of us are facing similar situations and your advice, and just knowing that there are others out there going through these decisions is quite useful.

Printing/copying stores have machines these days that make reasonably good reproductions of photographs. A number of wallet sized photos can be done on one sheet of paper really inexpensively.

I hope you are able to put together a new "wallet" for your mother soon. Best wishes to both of you.

Having gone through the placement problem, there are groups of social workers who have set themselves up as elder care consultants. Basically they do two things: First, they visit people in assisted living homes when the children are far away and report. Second, since they are in and out of these homes, they advise people who are looking for placements.

The best way to find one is by recommendation. Google, as always helps

Gah. What a blow.

I'm so sorry about the photos, too.

By Luna_the_cat (not verified) on 15 Aug 2009 #permalink