Living and Dying in Memory Care

As 2019 drew to a close, I didn’t know how good my Mom had it.

At the time, I didn’t think she had it so great. She was living in a senior living facility in Maplewood. She had been there for more than eight years, all of it in memory care. Eight years is an unusually long time to spend in memory care.

As 2020 began, she’d been there longer than nearly all the other independent and assisted living residents, everyone in memory care, and most of the many dozens of staff from the top on down.

For the first 80 some years of her life, Mom had been very active, engaged and giving. Alzheimer’s took from her the ability to walk and talk. I realized a few years ago that I couldn’t even remember when she had walked. Her life now was always in a wheelchair. People would ask me, “Does your Mom know who you are?” I always had the same answer. “I don’t know if she knows who I am, but I know that she likes me because she smiles whenever she sees me.” I prayed for the last few years of Mom’s life that God would just take her. Bring her to heaven. Rejoin her with Dad and all her other loved ones.

Myself and other family caregivers of the residents had struggled on and off for the previous few years trying to get the services we paid for. In my Mom’s case, they received more than $13,000.00 per month. We were told that according to the “metrics,” they were fully staffed according to industry standards. However, it was obvious to us all that nearly any issue could be solved with more help and that it was just simply a matter of being short staffed.

At one time, of the 13 ladies living on the floor, four of them had to be spoon fed at every meal. With only two staff members regularly, sometimes a third, dinner time was just a disaster. After many attempts to see changes, I realized the only answer was to do it myself. So I began to go in and feed my mom dinner many nights during the week. I was retired, my schedule allowed it, and I had the time to do it. My sisters and brothers live nearby but they were much busier in their daily and family life than I was.

As 2020 began, it was my habit to try to be at Mom’s by 4:30 each aftemoon to feed her her puréed dinner. I learned early on that whatever solid meal all the other people were eating, Mom was having the same thing. Just puréed. Puréed fish. Puréed chili dogs. Puréed garlic bread. Puréed barbecue pork sandwiches. You name it. I fed it to her.

Surprisingly, our bond grew. My now nonverbal, non responsive Mom and I enjoyed dinner time together. And I got to know and understand the other residents who shared our table.

Alzheimer’s is difficult for the casual or infrequent observer. Many nights, I’d reintroduce myself and answer and ask the same questions from the night before. Having said that, these were fascinating people with very interesting lives. They still had a lot to share. I really enjoyed their company.

A married couple in their late 90s began to share our dinner table in the month of January. He survived Pearl Harbor. I would ask questions about their life—how they met, where they lived. They were very much in love. He wasn’t too sure of many things, but he told me with a big smile on his face that marrying her was the smartest thing he ever did! And she would get the most precious shy smile and wink at me. She wasn’t sure where she was and he was very stressed because he couldn’t even feed himself or drink a glass of water anymore. But he sure had a big laugh and he was proud of their lives.

In February the facitity sent out a letter notifying us that a new law allowed us to place cameras in the residents’ rooms. I installed one with the facility’s full knowledge. The camera allowed for my siblings to see Mom whenever they wanted. However, just in the first week, we saw a few serious instances that we brought to the attention of the staff to get resolved.

On Tuesday, March 10, Mom’s hospice nurse notified our family that Mom was “transitioning.” We had heard this two or three times before, but Mom always bounced back. Though it was a concern, it certainly wasn’t imminent death.

The next day, Wednesday, March 11, I stopped by in the morning and was very surprised to see yellow tape blocking off the lobby. And a notice that due to COVID-19, there was “No admittance to anybody for 15 days.” We were all locked out.

The facility did the best they could in these uncharted waters. I brought over a couple dozen masks and five dozen assorted cookies and donuts from Grandma’s Bakery. A small gesture. Lots of families were doing similar acts. Most of us hoped this would be short lived. That’s what we were told.

And then March became April. And then May. Around Memorial Day, the facility allowed me to schedule a short “window visit,” with Mom inside the ground floor window, me outside, and a screen between us. Because of Alzheimer’s, I don’t think she even knew I was there. A few more window visits followed. Usually she arrived at the window asleep and never opened her eyes.

On July 12 we had an “outdoor visit.” Mom was on the other side of a wrought iron fence. It was hot, in the mid 80s. An aide sat five feet away to keep an eye on us. It felt like she was there to stop us if we tried to touch. Mom stayed awake for most of the visit. She listened to me talk. We listened on my phone to some favorite Irish songs and then “Amazing Grace,” “Ave Maria,” and “When the Saints Come Marching In.” Those songs just made these visits better. It was our “normal.”

Which brings me to the reason for my story. This is a story about how I was affected by Covid-19.

I didn’t know when I placed the camera on a cabinet in Mom’s room that it would become such a focal point of my life. It recorded whenever someone entered the room until they left. It was a low cost camera and recorded clips ranging in time from as little as 15 seconds to up to five minutes. I couldn’t have known that it would provide the only daily contact I would have with my Mom.

Because of the issues that I had seen early on, I began a daily routine of waking up and reviewing the clips from the overnight staff. Sometimes they were just checking in briefly or waking her up to change her.

It varied every day as to what time the staff got her up. Sometimes before 8 AM. Sometimes as late as 10 or 10:30 AM. They would get her dressed and take her out of the room. I had no visual until they returned to the room. An afternoon nap before dinner was the goal. A handful of times, she’d be gone as long as five to twelve hours, far too long to be sitting upright and unchanged in a wheelchair. They always heard from me when that happened! The end of the day meant watching them getting Mom ready for bed, hopefully brushing her teeth, and tucking her in. Then I could relax until the next morning when I’d wake up and start watching clips all over again.

I only knew what I saw on video. There were a dozen or so regular staff. I knew them only as an observer watching them. For the most part they were very kind and caring. They were also overwhelmed, overworked, and underpaid. Many didn’t last long. The staff were also deeply affected by COVID-19. But they showed up every day and worked to the best of their ability with the resources they had. Being a caregiver in a memory care unit might be the epitome of difficult working conditions. The aides are special people. They have earned my utmost respect.

On Sunday, July 19, my wife and I had been out all day. We picked up two takeout sandwiches and got home about 5:30. I sat at my dining table, unwrapped my sandwich, and began to get caught up on the day’s videos.

It had been a typical Sunday. After leaving her room for breakfast, Mom was back for a nap. Then they got her up and off to lunch. Back for an afternoon nap. Then once more, up and off to dinner.

I was at the point where the taped videos have nearly caught up to live video. I see three staff bring Mom in and lay her down for a nap. I’m wondering why she’s back so early. I’m watching a recording. I go to the live feed. There’s one aide sitting in a chair by her bed. This is unusual. I continue watching the recorded videos again. I hear an aide say something about calling Hospice.

Calling Hospice? What’s going on?

I call the aides’ phone. No answer. I try another number. No answer. I leave a voicemail. I call the head nurse on her cell at home. No answer. I leave a voicemail. I check the live video. An aide has been sitting in a chair next to my mom’s bed for at least fifteen minutes. I’ve never seen that. I yell out to my wife, “Something’s happening at Mom’s!”

On the live feed now, there’s a different woman standing over my mom. The video camera has a really lame microphone button that I never use. I push and hold the button on the app to speak. “Hello, this is Dave. I’m her son. Please call me right now.”

I can see on the video that she’s calling. My phone rings. I answer it.

“Hi Dave. I received a call that your Mom, in the middle of supper, quit eating… your Mom quit eating and leaned back in her chair. They put her back in bed. I’m not getting any vitals. I’m thinking that your Mom… I’ll be honest… it does look like she possibly passed away. I’m not getting a pulse at this time… I’m so sorry. Your family is welcome to come. I’ll be here. Just wear masks and come to the front door. I’ll let the desk know to expect you. Then you may come up to the room. Do you want me to call your sisters?…”

“No. Thank you. I’ll call them, I’ll be there soon.”

The last four months of my mom’s life, I was only able to watch her in short video clips. The last time I saw her was Sunday, July 12. We were sitting outside in the shade, listening to music on my phone from YouTube videos. One week later, on a Sunday afternoon, while I was eating a sandwich, I watched video clips as Mom died.

None of us in her family could get close to her for the last four months of her life. After she died, they told us to get some masks, and we’d be able to be together in her room. My mom did not die from COVID-19, but our family, like so many others, was affected by the COVID-19 pandemic.

My heart has broken many times as I think about the people in the senior living facilities. My heart breaks hardest for the people in memory care, kept from loved ones they can’t remember. The loneliest place I know of to be kept alone.