I continue to believe that the most profound
information I’ve learned during Kate’s journey with Alzheimer’s came from The
Dementia Handbook by Judy Cornish. She emphasizes that “all is not lost
with dementia” and points out that while rational thought is lost, people with
dementia continue to experience the world through their senses. That enables
them to appreciate and enjoy many pleasures of life.
I have made that an essential piece of knowledge in my care for Kate, and it has provided years of joy while living with Alzheimer’s. The quote in the title above comes from one of Cornish’s posts on Twitter. It caught my attention as useful advice, and I’ve discovered numerous ways to apply it. The most typical example is when I return to the apartment after lunch or running errands.
In almost every case, I find Kate sitting quietly in her recliner with her eyes closed while the caregiver sits across from her looking at something on her phone. When I come through the door, I say, “Hello, I’m home!” She often responds with a greeting of her own and gives me a smile as I rest on my knees beside her. I tell her how glad I am to see her. She generally beams. Her whole mood changes in those few moments. It just took focusing on her and conveying how important she is to me.
Here are other examples of how it worked with Kate over the past few days.
Kate’s mornings have always been the most
troublesome part of the day. Not all of them are that way, but she usually gets
a slow start. That means she doesn’t talk much, and, frequently, she doesn’t
want me to talk either. Sunday morning was one of those. She appeared to be
bothered by something.
I went through my normal routine. I tell her
how glad I am to see her and how special she is to me. On good days, that’s a
real ice breaker. On other days, like Sunday, it falls flat.
I didn’t push her. I know from experience that doesn’t work. I got her morning meds and gave her something to drink. That went well. Then I played her Love Changes Everything album and got in bed beside her. I didn’t say anything for a good while and then commented on how much I liked the music. Then I told her I also liked being with her. She smiled, the first affirmation I had received that morning. She was coming around.
That led to a very nice conversation before
she drifted off to sleep. She was half asleep when the caregiver arrived at
noon. Sometimes that makes it easier to get her dressed and up for the day.
This was not one of those times. She protested more than she has in several
I can’t be sure, but this may have been related to the fact that the caregiver is new. She began in January, and Kate hasn’t reached a comfort level with her. There are two problems as I see it. First, she doesn’t have as much experience as our other caregivers. Second, she is very quiet. She’s been here fewer than ten times, but she hasn’t said much to me or to Kate except when I have asked direct questions. In addition, she speaks softly and wears a mask, so Kate and I usually have to ask her to repeat herself before we know what she has said.
Given Kate’s mood, I felt that it was better
that I stay home instead of going out for lunch. In fact, I remained at home
the entire time the caregiver was here. That led to some good things because
Kate wasn’t getting any attention from the caregiver and looked bored. I took a
seat beside her while she was in her recliner and read The Velveteen Rabbit
to her. She perked up right away. I followed that by reading about one of her
grandfathers from one of her photobooks.
Things were going well, and I suggested we go
for ice cream. While we were out, she had a delusion and hallucinations that
disturbed her. Her mood shifted. We went back to the apartment. I spent some
time with her while holding her hand and talking to her in a comforting way. I assured
her that I would take care of several specific things that troubled her. She
became less worried, but she wasn’t as cheerful as she often is at this time of
day. I wondered how things would go at dinner. That is usually a good time for
her, and it went well except that she wasn’t as talkative as usual.
The day picked up after the caregiver left, and
Kate was in bed. She was very relaxed and happy. We talked a little about how
comfortable we felt when it was just the two of us. I treasure times like that.
She was tired and slept for an hour while I watched one of the NFL playoff
Our daughter called as she was waking, and we
talked for almost forty-five minutes. Kate often has trouble with phone calls but
did very well with this one. It was a beautiful end to a day of ups and downs.
It was a day that reinforced how the personal
touch makes a difference in the way Kate feels. It doesn’t prevent delusions,
hallucinations, or any of the other typical signs of Alzheimer’s, but it goes a
long way toward relieving her anxiety or elevating her mood. That’s exactly
what happened that day. Now, let’s look at another example that involves a
One of my problems with our in-home care is
that Kate doesn’t get this same kind of attention from any of her caregivers. I
have accepted the fact that their training focuses heavily on things like
bathing patients, dressing them, and using a lift to transfer them from bed to
chair and back again along with a host of related things. Everything they do is
important, and I don’t have the skill to do the things they do. On the other
hand, they tend to focus on their basic skills and neglect treating Kate as a
That is why I feel that focusing on her as a
person is my primary responsibility. As her husband, I’m in the best position
to do this. I love her, and I do my best to express that love in every way that
Having said that, we had an experience with a
new caregiver on Monday that offers another example of the importance of having
a personal connection with Kate. It also encouraged me to discover a caregiver
who has the personality and skill to give Kate the attention she needs.
The new caregiver came to us for the first
time one day last week. The agency had alerted me that she had not had much
experience. I found that to be true, but she was more personable than most of
the others, and I felt comfortable leaving for lunch. Before leaving, I put on
a playlist of music I thought Kate would enjoy. I also explained to the
caregiver that music had been very important to us. She told me it was
important to her as well. She is active in a church choir and has written and
recorded a few songs.
When I returned to the apartment, she was
sitting in a chair beside Kate and the two of them had been singing along with
a Peter, Paul, and Mary album. I can’t tell you how much it meant to me to see
Kate singing with her. To the best of my knowledge, that has never happened
with another caregiver. It made a big impression on me, and I was delighted
when she was back on Monday.
That experience was a good one as well. This
time they were in a conversation when I returned from lunch. I spent a little
time checking email, and they continued to talk. It was truly remarkable and another
great example of the difference it makes when someone is able to “Focus on the
person, not the dementia.”