Yesterday afternoon Kate and I drove to Nashville for a visit with our friend, Ellen Seacrest, who is in memory care following a stroke four years ago this past August. Except when she has been in the hospital or rehab, we have visited her approximately every 4-6 months. As her condition and Kate’s have declined over that time, I have been mindful that we may reach a point when it no longer seems best for us to continue.
Thus far, I haven’t felt that the visits would end soon, but the visits over the past year have brought about a few changes. Ellen’s ability to speak has declined very significantly. We can only understand about 10% of what she says though she seems to understand us. Music has been an important part of Ellen’s life. In the early part of her career, she was a music teacher. She also served as a church choir director for forty years, started a children’s choir in Knoxville and led it for 15-20 years as well as being actively involved with the musical community. That led me to think about entertaining her by playing YouTube videos of a wide variety of musical performances. That worked well for a while, but we are doing that less now. Ellen seems to tire when passively watching the videos for any length of time.
One might think that a primary reason for reducing or ending our visits would be a direct result of Ellen’s and Kate’s abilities to benefit from these visits. That is clearly a possibility. When we began, they remembered each other without a problem. Ellen still seems to remember us without any difficulty, but Kate’s memory of Ellen has faded significantly. I have had to explain who she is for over a year, maybe two. Once they are together, however, Kate responds with some recognition even if she might not recall Ellen’s name or the experiences they shared for so many years. In this respect, it is like her memory of me. Her not recognizing me by name or relationship is quite common, but, with very few exceptions, she has a sense of closeness and a good feeling about me.
It’s not Kate’s memory or Ellen’s inability to speak that I see as the principle factors that might end or reduce our visits. Before they become issues, I believe we are going to be affected most by the difficulty of traveling. When we started, it wasn’t challenging. It was a relatively simple day trip. We left Knoxville in the morning and returned later that afternoon or evening. When Kate started sleeping later, we left later and got home later at night.
I adapted to that by leaving after lunch and arriving in Nashville late in the afternoon, having a nice dinner, and staying overnight in a hotel. That allowed Kate to sleep late on Sunday as well. Then we could have lunch and go directly to see Ellen. Our visits have been ending about 3:30 or 4:00. That allowed us to get back to Knoxville at a decent hour. We have followed this routine the past six to eight months, and it has worked well.
Our experience this time causes me to think again about future visits. The past few weeks I have felt the effects of the increased responsibilities I have for Kate. That coupled with some of the routine demands of the holiday season have kept me busy. I found that packing for the trip was more challenging. I had more things to think about and was simply more rushed than usual.
On top of that getting Kate in and out of the car and into a restaurant is not as easy as before. That was complicated this time by the weather. She is very sensitive to many things, and that includes the weather. We devote a good bit of time getting her coat and gloves on and off. We have lost lots of gloves in the past, and I have been working hard to keep them in her coat pockets when she isn’t wearing them. Even putting on gloves is not as simple now. I have found the best way is for me to pick one of the gloves and hold it out in the exact position it should be in to put on the appropriate hand. I am zipping and unzipping her coat now as well.
Her sensitivity is not limited to the weather. When we arrived, I had arranged for a “mobile key.” When the system works, it is a nice feature. We don’t have to check in at the front desk. We go directly to our room. This was our third or fourth time to use it. We have had a problem each time. On our previous visit, we got to our room and found that the door wouldn’t open. I called the front desk, and they sent someone with a regular key that worked fine.
After our previous experiences, I still wanted to try again. I didn’t receive the key at all, so I stopped by the front desk and got a regular key. I didn’t think at all about Kate’s reaction to this. These problems have never affected her before. Not so this time. As we walked to the elevator, she complained about the hotel. That changed her mood and influenced her whole impression of the room. She wanted to know what we could do. I told her I had brought a couple of books that we might read (Charlotte’s Web and The Velveteen Rabbit), or her “Big Sister” photo book, or she could work puzzles on her iPad. She wasn’t interested. She just wanted to “get out of here.”
I suggested that we go downstairs, get something to drink, and go through her photo book. That’s what we did. We went to the restaurant and sat at a table where I could pull up a chair beside her. That worked fine except for one problem. There were a couple of young men at the shuffleboard table. She was frightened by the noise of the pucks. We moved to a table that was as far away as we could get. That helped some, and we spent about forty-five minutes looking at the album. She enjoyed it; however, it wasn’t the same reaction she usually has. Several things accounted for that – her mood, her difficulty seeing, and the noise from the shuffleboard table.
I suggested we go back to the room and get ready for dinner. We had a nice dinner. She got along well. When we walked in the hotel, she immediately commented on how nice it was. This is one of the good things one might associate with not having a memory. She was tired and worked a few minutes on her iPad before retiring for the night.
At 2:30 this morning, she woke and needed to go to the bathroom. When we returned to bed, she asked about “him” and “the baby.” I didn’t understand at first, but she said a few things that gave me a clue. These included “Did the baby come yet?” I told her it had. She asked if it was a “she” or a “he.” I told her it was a she. She was excited and added it wouldn’t have made a difference if I had said, “he.” She asked where he was. I assumed she meant the father and told her he was at the hospital. She asked when we could see the baby. I told her “tomorrow.” She wanted to know why we couldn’t see her today. I said, “It will be today, but since it was still the middle of the night, I said tomorrow.” We repeated this conversation multiple times for the next forty-five minutes or an hour. Periodically, I told her I thought the best thing we could do was go to sleep. She finally did. Until 5:00, that is. She wanted to go to the bathroom again. The baby did not come up this time. Instead she was focused on where we were and why. That lasted only a short time before we were both asleep again.
I got up just before 7:00. After I dressed, she woke up. This time I suggested she go to the bathroom. She went but was very confused. She told me she was “so glad you are here with me.” When I got her back to bed, she went to sleep rather quickly and is still sleeping at 10:00. If she doesn’t wake up sooner, I will get her up around 10:45 for lunch before going to see Ellen.
To be sure, Kate is just as confused at home. That alone would not cause me to end our visits, but there are added complications when we are out of town. I’ll be watching more closely to the way things go the next couple of trips and hope we can continue longer. I say that not only for my desire for us to stay in touch with Ellen but also because it has implications for our visits to other friends who live here as well.