Life Inside Memory Care

It has been almost a year since my mother Ginny turned 90 during the Covid lockdown. At the time, I remember telling her that as soon as restrictions lifted, we would celebrate this important birthday by taking her out to her favorite restaurant, ordering her favorite gin and tonic cocktail and digging into a birthday dessert together… instead of waving through a glass panel.

It is mind spinning what life is like a year later. Her body survived the long lockdown, but her mind did not. It was only a few months later when she would try and walk-out of the senior care facility at 3:00 o’clock in the morning. They promptly placed her into Memory Care – a type of senior living that provides specialized, secure care for people with Alzheimer’s and other forms of dementia.

Although we eventually moved mom to another community; every visit still gives me new insight as to real life inside a memory care unit; and it is eye-opening for the uninitiated.

The first change I needed to get used to was a large metal door, locked with a code, separating memory care residents from the rest of the assisted living community space. Exit-seeking is a common focus for someone with dementia. The resident believes that they need to “get home” or “get to work”, and they try to open the door. Many times, I have witnessed (or heard the loud metal banging) when someone is shaking the door in frustration. The staff is patient; re-directing the resident away, but too often. they return. The urge to meet some invisible obligation is overwhelming strong.

I also learned that the nurses try to keep the doors to the residents’ rooms locked during the day because residents will repeatedly wander in and out of other people’s rooms. Sometimes, they take items, not understanding that the items do not belong to them.

Our first experience with this was when we had barely moved Ginny in. We unpacked her belongings, hung her clothes in her closet, and then returned the next day to line the drawers in her dresser. We found every article of clothing we had hung folded neatly and placed in her laundry basket. At first, I thought she was telling us that she was ready to leave, and had prepared for that departure, but that was not the case.

We learned that there is a gentleman who “packs” his clothes nearly everyday and carries them outside where there is a gated courtyard. The staff will gently assist him in returning his belongings to his room. Based on something mom said, and well, the clear evidence of folded clothing, we figured out that he had visited and “helped” mom with her packing.

One significant change is simply being in contact with Ginny. Since I live three hours away, I am accustomed to checking in by phone. Now, I have to call the front desk, ask for memory care and ask for mom. If it is a good time for the staff, they will find her and put her on the phone. Why don’t residents have phones in their own rooms? We were told because too many of them were calling 911 requesting help in getting out of the facility.

When my husband and I do visit, my priority is to bring a small moment of joy for mom, whether that be a ride in the car, sitting in the nice courtyard (right now, it’s too hot) or taking her into the assisted living common areas for a change of scenery. I have used the opportunity to bring an old scrapbook to look at or call a relative or old friend of hers and pass the phone over so she can say hi. The assisted living section does have an ice cream parlor, so it’s fun to get ice cream together.

Ginny definitely needs to be in memory care, but she is a little higher-functioning than others. As we sat eating ice cream just a few days ago, we heard the metal banging down the hallway. My husband asked “Who do you think is trying to open the door Ginny?” and she replied “Well, it could be any one of us. You know, you have to try” and we couldn’t help but laugh. Her humor still peeks through.

I can’t overstate the adjustments to having a loved one in memory care. If I’m being honest, it’s an almost surreal experience. I arrived one day to find a man inside her living space (the door was unlocked) saying that he needed to find his wife. She had been kidnapped. Or, sitting in the dining area after lunch was over, I watched a resident walk over to one man’s meal (brought in by his wife) and open the dessert and start to eat it while the man was using the restroom. Or, finding my own mom barefoot in the lunchroom because she didn’t like her shoes.

I understand that these seniors once had vibrant lives, whether as mothers and fathers, serving in the military, owning their own businesses or maybe they were world travelers. I’m quite sure that at least some of them once served as caregivers for their own parents.

So, life comes full circle. But in memory care, I can only say that watching a diminished mind in motion is heartbreaking. It’s important to try and visualize who they once were.

In the overnight hours, the nursing team will check on each resident every 90 minutes (there are 16) to make sure they are safe. On a past visit, I had bought colored ribbons on rolls and children scissors so mom could have fun putting different ribbons on her beloved stuffed pet Button. But they told me she couldn’t keep the scissors. They weren’t safe. They even lock all toiletries in a closet, for safety and “theft” issues.

The staff is trained to try and determine what “obligations” the residents are trying to fill when they stand at that door as well as try and find the triggers for those obligations so they can be avoided. They are taught to walk in the shoes of the resident, and sense what solutions would make themselves feel better (or worse) and apply them to the situation.

I feel lucky in the sense that Ginny still recognizes me. That is not always the case in memory care. When I’m asked by family and friends how mom is doing, I find myself saying the same thing: “it’s just different now.” There are no more dinners out, no more grocery shopping, no more trips to the library, no more home visits and drastically reduced conversations on the phone. And Ginny, who has always been extremely independent and “in charge”, feels so passive to me now. It is unsettling to see her personality shifting away from what I have always known. We have entered a phase where we will never return to what once was. We can only move forward and think of new ways to make her smile. I hope to do that when we celebrate her 91st together.

12 comments

  1. Different is an apt description. When my mom moved over to the memory care part of her assisted living situation, there were no doors to their rooms. Before she had to move over, she was starting to go into other people’s rooms and crawl in their beds to take a nap. You can imagine the surprise of finding a stranger in your bed. Your anecdote about seeing flashes of your mom’s sense of humor hit home with me. I saw flashes of the old mom now and again. We were blessed because she always retained her sweet nature even though her mind was no longer the same.

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    • Hi Pete. I am learning so much about memory care now. I find it interesting that your mom’s home simply didn’t add doors to their rooms. I absolutely understand why. Yes! It is a huge blessing that your mom’s core nature didn’t change; so many suffering with dementia can literally turn into different people. The not remembering part is one thing – but becoming aggressive or agitated is something else and makes it all that much harder. Thanks for being so open in sharing your mom’s journey.

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  2. This brings back memories of when my dad had dementia. I don’t know if you ever saw my blog My Dad’s a Goldfish? Blogging kept me sane when I was caring for Dad. I rather abandoned the blog when I decided to turn the material into a memoir – still not done, I’m afraid.

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    • Hi Mary. No. I am not familiar with your blog about your dad, I “met” you through Sally, but I’m fascinated by the title and your experiences. It sounds like you’re working towards publishing a version of it, if you end up putting it back up, please let me know (or if you finish it) I would love to read it. It also sounds like you were very hands on with him which honestly, I would not know how to manage that. Lastly, I just found out that her home is suddenly not allowing dining with families right now because of the Delta variant, so my plan to celebrate her birthday will likely be put on hold…again. Its upsetting, but there’s nothing I can do. Thanks for your comment.

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  3. I walked down this path with my aunt for nearly ten years, 5 of them in a facility as you describe. You are wonderful to provide moments of joy for your mother, and I’m happy to know her humor peeks through as did my aunt’s. Of course I blogged about my experience, too.

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    • Thank you Marian. I will look for those stories on your blog. It’s not always easy to convey the emotional ups and downs when someone you love has dementia, unless it’s with someone who has been through it. We (as a whole) are a support group for each other. I am truly sorry about your aunt. Sadly, I was unable to visit mom on her birthday this week because the facility is in quasi-lockdown again. But I talked to her and it was a good conversation, we had a good laugh over something silly. Thanks for the follow and your comment Marian.

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      • Hi Marian. I apologize if I’m duplicating a comment – I lost internet 2 days ago and I’m not sure what comments went through or not. I will shorten this one, but to say, I absolutely enjoyed every word about your Aunt Ruthie. Her photos are always showing that she is laughing or smiling (love the lawnmower one!) I love that she played the dulcimer and piano and taught others her entire life. Her observations were so sharp like the housekeeper “takes me off the shelf, dusts me off, and puts me back up again.” Or wanting to switch places with your mom!!! LOL – that’s brilliant. What a wonderful woman and a wonderful life. Thank you for sharing this link.

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  4. Thanks for a window into what this is like. I have some experience with alzheimer’s and dementia through my Aunt and a former neighbor, but nothing like what you’re going through. I hope your Mom continues to keep her sense of humor.

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