On August 16, 2019 Mom turned 93. Early that morning, I sent an email to pals announcing the occasion and what was planned:
Lenoir will make her a small, beautiful cake (she ordered chocolate) and since she misses her watch which went missing, I bought her a Timex, even though she might not be able to see it too well or tell the time. I will be putting a little bouquet at each of the six dining room tables.
Adam and Kaylin will stop by around lunch for a visit and cake. Mom will be thrilled.
This evening mom and I will dine at the nice restaurant at Lenoir, invited by Paul, the husband of mom’s neighbor, Robin. They have a date night dinner there every Friday at 5:30 and Robin always enjoys her favorite: steak.
I knew Paul and Robin when they were political science professors at MU. She has Parkinson’s and dementia now. He is 88, remains an expert in northern India and world terrorism, plays tennis with older pals several times a week, has a guy pal group he eats with once a week, lives independently, and he is editing a book about India with contributed chapters from various experts worldwide, most from India, I believe.
I am in awe of his optimism and acceptance about life. He has lunch and dinner with Robin nearly every day, greets her with a kiss and “Hello, Sweetie!”…drives an older model Kia, loves good food and wine, and has such a sense of wonder and surprise about life. They have good family support even though most live in California and Oregon.
Paul speaks with a loud voice and wears hearing aids. And he is a talker, so I don’t have to say much during visits. I ask an open question, and off he goes…politics, movie recommendations, books, favorite restaurants, childhood memories, recipes he tries, etc.
It is a delight to have them as good acquaintances at this stage in the journey Mom and I are on.
Lots of laughter and chatting now. Plenty of tears ahead down the road.
A Two-Part Birthday
Part One: A Really Nice Celebration
Mom was in a good mood that morning, although she was a bit surprised when I reminded her that it was her birthday.
Her cousin, Carol, send me a check and asked me to pick out a nice flower arrangement. I did and I also bought some bouquets of astromeria (“Lily of the Incas”) so that I could set out small bouquets on each of the dining tables. The blooms last an incredibly long time in plain water.
Mom was delighted with the flowers.
In recent days, Mom was talking about not finding her watch. I was honest.
“It went missing several months ago, Mom, and I haven’t been able to find it.
Do you miss wearing a watch?”
“Yes, I do!”
“OK then. How about I buy you a watch for your birthday?”
“Yeah. August 16 is your birthday and it’s coming up. Any idea how old you will be?”
Pause. “Not really.”
“Well, you will be 93 years old on August 16.”
Another pause. “Wow, I’m old.”
On her birthday, I gave Mom a simple Timex in a style I thought she would like. She loved it; however, the adjustable band was way too big. I took it to a jeweler for assistance and he showed me how to fit it. When I went to see her today, we fitted the watch and she was pleased.
Grandson and Great-granddaugher
Adam and one of his children, Kaylin, were able to join us for lunch. Mom was all smiles when she saw them.
We had lunch in the conference room where it was quiet. Adam told us all about his trip to North Dakota where he and three friends were invited to attend a regional powwow. Mom and I were intrigued by his description of the ceremonies, the communal meals, the weather, and the elder who befriended him. Our eyes were wide open, and we frequently said “Wow” at the same time.
We were given a huge apology because the bakery ovens were down and Mom’s cake would be delayed. We arranged for it to be delivered to the restaurant after dinner.
After Adam and Kaylin left, I sat with Mom a bit and we just relaxed. When I got up to leave I told her I would be back later because we had an invitation from Paul and Robin to join them for dinner at the lovely restaurant on campus, Lavinia’s.
She had no memory of the invitation, but was happy when I told her I’d be back later and we would go out to dinner.
Part Two: A Visit from the Sundown Demon
One of the reasons I visit Mom between 10 a.m. and 1 p.m. is because I don’t do well with the Sundown Demon. It brings back ugly memories of a few years ago when I was dealing with Dad’s dementia and Mom’s own increasing symptoms.
During a recent care management meeting, I asked how Mom was doing in the afternoons and evenings. Overall, our visits have been terrific so I wanted to know how she was at other times. In unison, two staff members said, “She’s mean.” I just nodded my head with understanding, grateful that Mom is in the care of these well trained and experienced staff members who have a terrific sense of humor and team spirit.
So at about 4:15 p.m. on her birthday, I came back to see Mom and get her ready to enjoy a nice dinner. I found her fast asleep, slumped toward the side in a recliner. When I gently woke her up, I knew. This was not going to go well.
Mom was extremely groggy and said she didn’t feel well. When I reminded her of the birthday dinner, she made a face. “I don’t care.”
When I asked her if she wanted to put a new top on, she winced as if in great pain.
“Do you hurt anywhere?” I asked.
“NO! I just don’t feel well. I’m tired of people telling me what to do!” Then she lifted her arm as if to warn me with an ”almost slap.”
“Were you going to slap me?” I chided.
“Yes, I was!” she replied with angry eyes wide and confused.
Interestingly, when Mom is in a bad mood, she is quite articulate and has no problem expressing her anger and despair. One would never guess that she has times when she points to try to explain a situation or a say something about a person or an item, and words just don’t make it out her mouth.
“If you don’t want to go to dinner, we don’t have to go.”
“You go. I don’t feel good.”
I stayed quiet. I just let her shift in her chair, look around the room, and get her bearings.
After a while I asked if she had to go to the bathroom and she said yes. She needs assistance using her walker now and the two of us shuffled our way down the carpet lined hall to her bathroom.
When we entered the bathroom, she turned to me and said, “Something’s wrong with my mind.”
“I know. Maybe it’s because you feel so tired right now.” She was not convinced.
She agreed to change her top and sit in a wheelchair just in case she decided to go to dinner. But she was sad and seemed lost. We sat in the bathroom, me on the toilet seat lid facing her in her wheelchair, and I listened to her sighing and mumbling about not liking her life. I didn’t say anything. I just let her express herself until she stopped.
“How about if we go back out to the TV room?” I suggested. “Paul will here soon and we’ll see how you feel.” She didn’t respond, but she did let me steer her forward.
Robin was waiting. Staff make it a point to dress her up, do her hair, and put on a hat from her world travels. Robin knows Friday night is date night and she looks forward to it, as does Paul.
While waiting, Mom started a why-bother-it-doesn’t-matter-anymore-poor-me monologue. She spoke slowly and quietly.
“It’s up to you, Mom. It’s okay if we don’t go to dinner. Paul and Robin will understand.”
Shortly after I said that, Paul walked in, greeted Robin with a kiss and “My you look so beautiful,” and then he greeted Mom and asked if she was ready to go celebrate with a birthday dinner.
I started to explain that she wasn’t feeling well, and when I turned to her to ask if she felt up to it, she said, “I suppose so. I’m hungry.”
So we went to dinner and we had a very nice time overall. By that I mean, there was no loud anger or acting out on Mom’s part. At first she looked as if she were a prisoner being forced to choose a final meal and she did NOT want my helping looking at the menu options. When Paul suggested the petite steak that Robin has every week, Mom said, “That sounds alright.” After that she seemed to relax a bit and listened to Paul and me chat about various topics. Occasionally she would say a participatory, “yes” or “I know” and even laugh when we laughed.
She did well, trooper that she is, and Paul and Robin were gracious hosts.
But as far as that chocolate cake…a team of staff arrived with profuse apologies because the bakery ovens were still out…BUT…they presented Mom with their signature hot brownie dessert made in the restaurant kitchen and served with ice cream. It was presented on a large plate with “Happy Birthday Pearl” written in chocolate along the rim. Now THAT made Mom smile. She and I shared the delicious dessert and another was brought out for Paul and Robin to share.
As we headed back to Mom and Robin’s “neighborhood,” we admired some artwork painted on windows…a rooster and two Snoopy scenes. I also decided that I was going to sit with Mom for a while until she got sleepy. I just didn’t want to leave her alone.
There weren’t many folks sitting in the TV area. Paul situated Robin, gave her a kiss, and said goodbye to everyone.
Mom was in the wheelchair and our task was to get her into a nice, comfy chair. Problem was, I wasn’t sure how to manage that and when I would make a gesture to try, she shooed me away and told me she could do it herself. Of course she couldn’t, but I just stood nearby and kept my mouth shut while she tried to figure things out.
A staff person approached and I mentioned that we might need assistance.
“Well, sure, Honey. I’ll help you get into that chair. Put your arms around my neck.”
And with that Mom was lifted up with a yelp from her and set down. She smiled at the staff person and said, “Thank you very much.”
I sat in the chair next to her and within five minutes she was nodding off.
“Are you sleepy?” I asked. She nodded.
“Okay, I’ll let you rest. I’ll be back tomorrow, okay?”
Just another voice in the wilderness from someone who's lived on this planet for over 70 years and faces permanent residency on Planet Elderly. Update: As of March 2, 2017, I turned 70. I'm now an official resident of Planet Elderly. Dad passed away September 22, 2016. In late March 2017 I was able to move Mom closer to me where she resided at a memory care assisted living community until being downsized to a skilled nursing senior community in October 2018 in Columbia, Missouri.
I view the Parental Journal entries as part therapy, part family history, sort of a case study of our family's journey with dementia. It's quite an adventure.
Recommended readings for others who have loved ones who live with some form of dementia: The 36-Hour Day; the website: https://www.agingcare.com/ ; https://www.alz.org/