Editor’s note: This interview was conducted by email.
Congratulations on publication of your latest book, Az and Me. It’s a non-fiction account of a deeply emotional and personal experience. Can you describe the circumstances that led to it?
Sure… Because Paul has had it for so long a time (14+ years) and I was his sole caregiver for 13+ of those years, and because my family is gutted with Alzheimer’s (father died of it years ago and two brothers died of it this past year), I felt it incumbent upon me to write what I knew… all the things I had to learn the hard way. One of the most prescient was veteran benefits because it was my generation who went to Vietnam… and so many (like me) do not know for what our vets qualify. I am changing that… I am arming my generation (to use a military metaphor) with the info they need to make the journey less difficult.
On your website, you describe your more than ten years as the sole caregiver for your husband, Paul Wesley Gates. What did he do before the disease was diagnosed?
Paul, like me, has had several careers. First, he was a long-haul, truck driver who owned his own big rigs (he drove one all over the country for 30 years and leased the other out, to other drivers; he was named by Atlas Van Lines as “one of the 50 Best Truckers in the Nation” for driving all that time ‘without accident or incident.’ When he stepped off the big rig for the last time, he went to a job fair and discovered that the Department of Corrections was hiring and he applied. Some laughed, believing him (now in his early 50’s) too old for that job. But Paul had always been a jogger… did 5 Ks… and he was fit. In the physical, he “blew the younger guys’ doors off” (his Arkansan expression for making believers out of them). His times on all the test were better than theirs. He worked at the Adult Correctional Institutions as a correctional officer for the next 19 years. All along he was in the Army National Guard for 20 years where he was 1st sergeant of his unit, the 861st. in East Greenwich. That, added to his two years in the Navy Seabees, when he was 20 (he signed up during the Vietnam war), has given him Career Military status. So… long distance owner/operator of big rigs… ACI correctional officer (don’t ever call them “guards”–ha-ha)…Military Man. And actually, I was sole caregiver for 13+ years; he’s been diagnosed for 14+ years. It’s easier for me to say over 10 years, than be specific and it’s also difficult to ascertain WHEN Alzheimer’s came on. As a caregiver, you see signs waaayyy before actual diagnosis.
And what were those ten-plus years as a sole caregiver like? You write that you found a way for him and you to “survive – even thrive.” Can you please expand on that?
Most of those years were fine, probably because I’ve had to operate pretty independently with my life situations (divorced, followed by two deaths of spouses by the time I was 42 years of age). I raised two daughters ten years apart in age, all on my own. We were both retired (I from teaching and real estate and he from his jobs), so we went back and forth to our retirement destination –Asheville– for 9 years where we had a condominium in the mountains. I drove all the time; I did all the financial necessities. He and I could still visit towns, bike often (which we loved to do), go for walks, socialize with friends. Paul and I have been together for 34 years. The progression of his illness has been a very slow one, but he could never have lived on his own. In 2010, in Asheville, he was hit on a mountain road by a [youngster] driving an uncle’s truck. Paul suffered a broken neck, and died as result of swelling, following surgery. The triage team brought him back to life but he’d suffered an anoxic episode (no oxygen to the brain). It took us two years of PT, OT etc. to recover somewhat but the accident exacerbated his cognition decline… and he was officially diagnosed with Alzheimer’s in 2010.
Az and Me also has humor. How did you find that, given your situation?
I absolutely love people; I love their life stories; I love how they conquer tough situations. In my own life, I’ve been devastated often and tried to find the kernel of humor–somewhere. If it were the cancer ward of Roger Williams Hospital when my 2nd husband had to go in for rounds of 24/7 chemo, rooming with a little Italian guy whose wife brought in her heating unit and proceeded to warm up the “meat-a-balls” for Joe because, in her mind, meat-a-balls can cure anything. The rest of the wing was probably nauseous on fumes because chemo doesn’t make for a good appetite. Things like that make me smile…Humanity makes me smile. I will find the humor–if it’s there. And I will share that upbeat attitude with others, because the journey is too desolate if we solely focus on the other (I wrote that story up and it appeared somewhere).
Where is Paul living now?
For 18 months, Paul has been a resident of the Rhode Island Veterans Home in Bristol, where he is well cared for and seemingly content. We got the call 5 years ago that they had a bed for him but for 3 of those years, I said “We’re not ready yet.” I felt I could still do all. Two years ago, he got sick twice and was hospitalized each time, while I, alone, sat sentry duty in his room. Our primary care had a heart-to-heart with me, telling me he worried about me–my health. I had gotten sick 7 yrs ago, probably from doing everything, on my own, so I was sensitive to what he was saying (I ended up in the hospital when I sent him to a facility which was very inappropriate, a facility for which I paid $8,000 for 4 days, when we never needed to pay anything, had I known about veteran benefits). This is another major reason I wrote the book, so they don’t suffer the same mistakes I did.
You are very active in Alzheimer’s advocacy. Some details, please.
The Veterans Home recently held a job fair, in the hope of interesting new employees in coming to work for this wonderful facility. Veterans Administration Director Kasim Yarn and I had discussed methods to engender interest, I suggested a reach-out campaign to the community and he instituted the job fair to hopefully get the necessary staff so the vacant beds (about 50 at last count) can be filled. In my own right, I am signing on various libraries to host my talk on “How to Survive and Even Thrive as a Caregiver to a Loved One with Cognitive Disorder.” In my talks, I utilize my skills developed over a lifetime as teacher (I taught junior high for 23 years and then another 7 years teaching high school.) After I retired, I volunteer to teach writing at the ACI, women’s prison and at the jail in Asheville. I love teaching… and it’s what I am doing throughout my life… First, as teacher in the classroom… then as 9-year realtor (teaching folks how to buy and sell property)… then as author and guest speaker. So, as I approach 80 years of age, I continually discover new iterations of myself and I keep going through doors.
What will one find on your blog?
Encouragement… a bit of a different perspective on various topics.
We’d like to learn a bit more about your earlier books. Tell us about Boomerrrang.
Note to other, newer authors out there… Maybe don’t be cute with titles. People who put in Boomerrrang, hoping to get my book, are autocorrected to Boomerang (with one r), written by another–or they get the object you toss in the air. Google fights a person who tries to put in the 3 rs of my books’ title.
Boomerrrang talks about our (two Boomers’) many year journey to find the perfect retirement region… how we made our decision (and nixed other regions)… positives and negatives of life in a condo community, value of a Buyer Broker when purchasing property, self-advocacy (due diligence)… warning about toxic dump sites. This book marries my knowledge as a top realtor with our experience of living in one of America’s trendiest retirement areas—Asheville. Humor abounds in the anecdotes I share and I even give the reason(s) why we came back (Boomerrranged) to Rhody. Hint? It wasn’t because of grandchildren.
And the Grandpa and the Truck series.
In my continual push to find the kernel of hope, in all things, I noted the irony: My award-winning trucker was taken out on a back country road. He died in the process and was brought back to life via the triage team. It was a long, slow slog, back to any kind of normalcy. When our grandkids were visiting (because we had so much “downtime,”) I heard the littlest one, pushing a toy big rig on the floor, say: “Breaker…Breaker…1-9-Any smokies up there, on the superslab?” He was repeating what I’d say when I told him Paul’s trucker stories. At this, I said: “Damn—I’ve got to write these stories.” We self-published two books…we were speaking to senior audiences who’d like the books for their grandkids and elementary audiences (as seen on grandpaandthetruck.com)…but then Paul’s Alzheimer’s created too many problems for me, so I had to stop. I plan on publishing the next six books in our children’s series and I am looking for a partner (elementary teacher) with whom I could pair and pilot this series that tells of the adventures of a long-haul trucker as he wends his way across America. My theory is: “If a man in a yellow hat with a monkey can enthrall kids, why not a tall, lanky Arkansan (Paul’s from there), wielding a huge metal beast, as they travel across America?” These stories teach geography… nature… how math Is needed in everyday jobs… historical events (Woodstock Music Festival), etc..
When did the writing bug hit you?
My real writing happened in the time of my 2nd husband’s cancer. I was teaching full time; the kids were 13 and 3. I filled notebooks at night, as I poured my thoughts into these. After he died, I determined to take my kids (ages 15 and 5 then) on a seven-week, five-country backpacking expedition to Europe. I needed to reaffirm a belief in myself… There had been too much “terrible” for too long. When we came home, I wrote the experience up and sent it to the late Keith Bellows of National Geographic Traveler. He sent me a note in which he told me to call him. When I did, he said: “This never happens…a publisher of a national magazine calling an unpublished writer (me). “I’m telling you that ‘you have talent.’ I’m not going to use this piece but I want you to send me more.”
I knew more traveling wasn’t going to be a possibility; I was a poor widow with two kids. But, to this day, I have the letter he sent me. I kept it to steady me when I had self-doubts.
After that, I began sending my work into the Providence Journal, to Carol Young who accepted my freelance pieces and then I began writing Op-Ed’s when Robert Whitcomb was editor there. Finally, I became a monthly columnist when Ed Achorn took over the helm of the Editorial pages. Along the way, I had several front-page stories—both in the Providence Journal and Cover Stories in the Sunday “Lifestyle” magazine, one of which was my diagnosis, mastectomy, and reconstruction following my breast cancer diagnosis in 2001 (“I Get the News All Women Dread”) and another, “How Much for College?” whereby I touted the advantages of Canadian higher education at McGill University (my younger daughter went there), a school considered “the Harvard of the North.”
What did your many years as a teacher bring to your writing?
The love of imparting useful information in a manner others will appreciate is the goal. As a teacher, I created little vignettes that would somehow express the lesson I was trying to get across (I was an English teacher) and the kids would say “Wow! Miss Mellor! (you’re always a Miss, whether married or not) That story’s really good. You should be a writer!” They meant it… They liked my stories. They were my earliest fan base, and to my thinking: “If I could corral their attention, I could get anyone’s.”
We read a profile in The Rhode Island Wave in which you describe your years as a single mother. Can you please elaborate.
Some of my most difficult years were as a single parent. At age 25, I left my first abusive husband and took my five-month-old baby with me. She and I lived on my sole salary, in an apartment for the next 5 years. I hired a woman to care for her while I taught school. I married again, when she was 6… That marriage was another difficult one and in the 6thyear, he was diagnosed with terminal cancer. He’d live another two years. Two years after that, I became engaged to a wonderful man but he died of a congenital heart problem before we married. Overnight, I was plunged into a financial nightmare. We’d bought a house together and now I took on the debt, alone. I still owed a mortgage on the home I had before. Life for me seemed to always be a sucker punch to the gut. I could barely recover before another awful crisis hit. I felt I was always treading water. And as a single parent, I was always terrified… I was responsible for the three of us. When the teen years hit, each time (the girls were ten years apart in age), I’d say: “You know—The 3 of us are in a lifeboat and I’m the captain. I’ve got to get us across the channel to the other side. You’re not gonna like me a lot, at times, but that’s just the way it is.”
I was right—They often ‘didn’t like me a lot.’
Are you working on a new book?
Interesting you should ask… Former Deputy Executive Editor of the Providence Journal Carol Young once said to me: “I wonder how many books you have in you…” And I thought: “What’s she talking about?” At the time, I didn’t even know I had one book in me. Now, I’ve published 4 books, with others in the queue. The book I really need to finish is the story of my life.
“In the Shadow of Princes” documents my life, from my early years in RI’s 1960 “All American Family.” (We actually represented Rhode Island in the national contest held in Lehigh Acres Florida). The problem? I grew up in a family “All about the boys.” My father, an educated man, taught my younger sister and me that girls were “less than” men… “Girls can’t do math and science” (his areas of expertise). My two older brothers were superstars in all areas—both valedictorians of their classes who went on to West Point and Brown, then Yale Medical School. They were extraordinary athletes (one was the ProJo’s Rhode Island Schoolboy Athlete of the Year.) As my adult life devolved into one crisis after another, I began to believe my father’s less-than-stellar opinion of females. It took herculean effort for me to turn that around.
So, mine is a life story of resilience. I pursue my missions and expect to be successful. Today, I am a caregiver advocate first, an accidental children’s author who will get my children’s trucker series published (because it’s a great vehicle—pun intended– to teach so much). My personal story will give others faith that they, too, can overcome their own daunting challenges, whether it be poor self-image, abusive relationships, divorce, death of a spouse, challenging illnesses. Because I had all of those. They can overcome and go higher than they ever thought.
Thank you, G. Wayne Miller….It’s probably waaaayyy more than you expected.
