Great starts are easy, the goal is to finish well
While my Daddy was still alive, my parents lived in a little cottage on several acres in the country. They loved living independently, but over time they began to need more and more help in order to remain ‘independent’. My sister, husband, and I made multiple trips daily out to their place to bring meals, dispense medicine, clean, and even a few fun things, which included singing, snacking, and reminiscing.
My sister and I recently had a lovely chat about music and its important role in the lives of people with dementia. She told me about the amazing story of Tony Bennett and Lady Gaga.
Tony Bennett was first diagnosed with Alzheimer’s in 2016. By then, Lady Gaga had become Tony’s devoted protégé. Even after his diagnosis, they were still singing together. In 2021, they performed two sold-out concerts “One Last Time: An Evening With Tony Bennett and Lady Gaga.” The limiting and muting effects of Alzheimer’s seemed to disappear while he was singing.
I got my love for reading from my Mama. She was an avid reader. Her love of a good mystery influenced my own reading habits. I read all her Agatha Christie and Rex Stout paperbacks, and she borrowed all my alphabet and cat mysteries. We also shared a love for Erle Stanley Gardner’s Perry Mason.
When it comes to reading, this is a great time of the year. The holiday season is over, and the weather keeps us inside more. These factors give us the perfect excuse to enjoy more guilt-free periods of curling up with a new or favorite book.
One day, when my doctor called to give me the results of a blood test, I was quite surprised to hear that my creatinine level was up. Since she knew I had been on a trip to an area with a hot and dry climate, she suggested that I could be dehydrated. I certainly didn’t feel dehydrated, but I agreed to up my water intake for two weeks and then retest. Two weeks later, she called to inform me that the creatinine level was back to normal. I was surprised at how quickly dehydration had occurred. She explained that whenever we change our routine because of travel or sickness, the healthy habits we built into our daily lives are disrupted and our systems can get out of balance.
Even though this is supposed to be “The Most Wonderful Time of the Year”, when you are a caregiver for a loved one with dementia, celebrating Christmas can become challenging.
When my Mama, who had dementia for well over a decade was in the early stages of the disease, she was still aware of seasons and most holidays. As time went on, she became less so. Dementia stole her ability to look forward to Christmas, birthdays, or any other previously meaningful day or time of the year. The pages turned on the calendar, but her days remained the same.
“Who are you?” No, that is not the person with dementia asking. If your loved one moves to a Skilled Nursing Facility (SNF) or Care Home, their past may be virtually a blank slate. Perhaps this question comes from a compassionate CNA or other health care worker, or even one of the other various persons who are now engaging in your loved one’s life.
Five years ago when we first moved to Charlotte, we had to make so many changes – way more than simply our zip code. The list included new driver’s licenses, doctors, dentists, registering to vote, where to shop, and how to get to all these places. Over time, we have come to learn about our new city and can (usually) find wherever it is we need to go. Occasionally, we still rely on our phone apps to get us there.
Wayne and I recently met with a group of ladies who want to write a book. We were invited to attend the gathering by Venitra White-Dean, a lovely lady and founder of The Frankie Mae Foundation, a non-profit organization advocating for the caregiver as a whole person.
Each one attending realized they had a story to tell about their experience with caregiving. While everyone’s story shared similar elements, each was also unique. Their motto was, “We’re all singing the same song – just different verses.”
After caring for Mama throughout the last decade or so of her life while dementia relentlessly stole bits and pieces from both her abilities and memories, I am more committed than ever to do everything I can to strengthen my brain and hopefully prevent dementia from occurring in my own life. Of course, at the same time, I realize that there is an element of illness that is beyond anyone’s control. Regardless, I enjoy the healthy lifestyle that Wayne and I are pursuing and will continue it for as long as possible.
Mama’s blank expression assured me that she had no idea what I wanted her to do. The bunch of wisteria blossoms droop limply in her hand. I tried it again. Making an exaggerated motion of sniffing the flowers, I told her how lovely they smelled She gave me a confused look and a polite smile as she handed them back to me. I gave up. Temporarily! I desperately wanted her to enjoy the fragrant wisteria as she had in the past. Dementia stole that joy from her as well.
One of the saddest aspects of my Mama’s dementia was the realization that she had lost her sense of smell.