Rarely do you find a writer that can capture the “voice” of someone with dementia. It truly takes someone who has experienced it up close and has the humanity to understand and respect that person’s dignity to capture it on paper. Walter Mosley does just that in his latest book – “The Last Days of Ptolemy Grey”.
I had the great pleasure of meeting Mr. Mosley at the 2011 Arizona Kidney Foundation’s Author’s Luncheon. I personally spoke with him to thank him for how he shared Ptolemy’s thoughts. I have worked closely with dementia clients for many years in the nursing homes and as a support group leader for their caregivers. As Mr. Mosley did a live reading that day – I heard what my clients could not articulate in their own words. The moments of clarity – the periods of confusion. But most of all – the struggle to hang on to what does make sense. To hang on to their dignity.
Below is an article where Mr. Mosley shares why he was able to add that level of sensitivity to this book.
Q&A: Walter Mosley on Taking Care of Your Parents
by Rachel Emma Silverman (from The Wall Street Journal)
Walter Mosley is a best-selling author of more than 34 books, including the popular mystery series featuring detective Easy Rawlins. His latest novel, “The Last Days of Ptolemy Grey,” explores some issues that many Juggle readers have dealt with or will eventually face: the challenges of aging, and caring for someone with dementia. The book’s lead character, 91-year-old Ptolemy Grey, lives in a cluttered Los Angles apartment and suffers from age-related dementia. A young family friend helps care for him, helping to restore his dignity – and eventually, through an experimental medical procedure, his memories.
The book is a personal one for Mosley. In recent years, he helped care for his mother, who suffered from dementia and passed away two years ago at age 88. Like many people dealing with aging or sick loved ones, Mosley, 59, had to manage his mother’s care remotely; he lives in New York City, while his mother remained in her home in Los Angeles.
Mosley hired caregivers through a local social-service agency to help his mother in her own home, where she had lived since the early 1960s. Some of her care was funded by a long-term-care insurance policy that his mother had bought, with foresight, years earlier.
I spoke with Mosley recently about some of his experiences caring for his mother. Here are some excerpts from our conversation:
Wall Street Journal: When was your mother diagnosed with dementia?
For at least seven years, it was apparent that she was having more and more difficulty handling things, and slowly over a period of time, I started taking over responsibilities in her life, paying the checks, making sure that other things were dealt with…They eventually took away her license and I had to find someone to drive her…I think that in my mother’s early 70s, there were markers that showed she was having problems. We were leaving a restaurant and she looked around everywhere and said “I can’t find my keys.” I looked in her purse. They were right there.
Tell me a bit about your family. Were there other family members able to help you?
My father died 17 years ago. I have no brothers or sisters. My mother had no brothers or sisters. My father was an orphan… One of the real challenging issues, it was just me. That was all that was going to take care of this.
…What I was dealing with was very much like parenting, but inverted. Parents automatically know that children need to be protected, physically and emotionally. That’s the whole thing about parenting that’s inverted here. You know your parents in another way — as being responsible, taking care of themselves, as being in charge, and they know themselves in that way, too…You can never do as much for them as they did for you.
Was it tough to communicate with her from afar?
Toward the end, it was hard to communicate with her period. She understood facial expressions but language was gone completely. Once people get that far gone, it is very difficult to be able to tell if something is wrong with them, because they can’t explain what they are feeling…When you are struggling to communicate with someone who has dementia – it’s like learning a new language.
…It’s so easy for people to treat the elderly like they are bags of grain – “put that bag of grain over there.” But that’s not what’s going on inside….That’s one of the things I attempted to do in my book, is show the narrative that exists inside [Ptolemy Grey’s] mind, to see those moments when someone is trying to tell you something and they still can’t do it…That struggle for articulation. That’s a very human struggle…
…One of the women who took care of my mom, Eloise was her name, she was really wonderful and really loved my mom. One time I ended up in LA, I called Eloise and said ‘I’m here. Can I see my mom?’ Eloise said that [my mom’s] hair was a mess and I don’t think she would like to be seen in public like this. I was so happy –even though my mother could no longer articulate what she was feeling, I know that she would still feel that way.
What advice can you offer for others facing similar situations?
The most important thing is to remember the dignity of the person being taken care of. You have to listen to them so closely, really listen to what they have to say and push yourself to try to understand. Pay attention to what their needs are, If they say, “I need to be in my house,” then maybe that’s what they need. It might not be possible, but you have to try your best to do what’s possible under the circumstances that present themselves.
It’s not a complex thing. It’s not complex to love children – it’s the love that matters to kids. When they run up ahead and look back and make sure you are there, and you are always there, that’s what’s important. It’s the same thing with the elderly.