The Road Less Traveled: Becoming Caregiver to Caregivers

I never thought, at my age, I’d become an advocate for caregivers and Veterans.

How’d it happen? My personal experience that saw me felled by a disease that affects or will affect millions in the future—Alzheimer’s.

Now–understand: I’m not even the person who has the disease.

As wife and sole caregiver to my husband diagnosed for over 15 years, I became a casualty– physically, emotionally and financially. My experience spurred me on to become an advocate for others who are on this journey or those who will be.

Because I didn’t know my husband was eligible for veteran benefits, I paid for daycare at one facility at $100 per day, until I discovered that three of the four days a week would be paid for by the VA.

I didn’t know I could get respite care under his veteran benefits. That lack of knowledge cost me $8,000, when I put my husband in a facility, while I was hospitalized.

I vowed, following my health crisis, to alert the public to what I didn’t know.

The amazing part? I really enjoy my speaker role. I engage with audiences; I lift them up for 60+ minutes, by giving them hope, and I imbue them with my own practical tips and suggestions to make their lives easier, while lacing my delivery with personal anecdotes and humor, recognizing the adage “a spoonful of sugar helps the medicine go down.”

I teach attendees how to survive and even thrive as Caregivers. And because I was a teacher for 30 years and a realtor for another nine years, (teaching folks how to buy and sell property), I’m comfortable in an instructional role.

Finally, I’m a writer…journalist…poet and author.

To date, multiple outlets of TV, news publications and podcasts in Rhode Island, have focused on my advocacy and my message.

And my self-published book, “Az and Me: A Partner’s Journey with Alzheimer’s,” is on Amazon’s Best Sellers’ List.  

At the allotted time of a guest talk, I arrive with a container of my books fastened to a dolly and transport all into the room where I deliver my talk. The dolly is a remnant of my husband’s 30 year, long-haul trucking career. From him, I learned how to move goods in an expeditious manner. Attendees will have opportunity to buy my autographed book for $25.00, cash or check.

Next, I set up my computer and Powerpoint, then sit among my audience so I can easily respond, thus removing the distance factor as when I’m at a podium, looking out over the crowd.

I’m now simply a friend, sharing with them my experience…my recommendations. There’s a back-and-forth dialogue that develops, between the audience and myself. These folks are hungry for any information that will make their lives easier.

Then I launch into my message: I tell them how they might take away the keys from someone who shouldn’t drive; I share the frustrations we all feel at times, as we caregivers answer the cognitively disabled person’s repeated questioning; I admit to ‘losing it’ at times (perfectly understandable) and suggest ways to avoid such; I advise seeking a lawyer accredited in senior law and tell how to find out if a lawyer has such a designation ; I recommend checking out veteran’s benefits to see if one’s loved one meets criteria; I note the self-care methods I employed over the years, and I discuss what happened to me when I didn’t make myself a health care priority.

Next, I shift their perspective, asking them to think of the “positives” life with the cognitively impaired might present. None raise their hands so I tell them: You have total power of the purse; you control the remote; you needn’t go for variety in meal-planning; you need never see again that sister-in-law you hate (they all laugh).

I pepper my talk with my own poems that are uplifting or humorous.

I suggest my book is a manual or guide they may need to access in the future. It contains no long, text-heavy passages, because Caregivers haven’t the time or the energy to venture into such. Instead, I present my information in bite-sized packages of one-to- two pages.

I call my book “a box of chocolates.”

As former Chief neurologist of Rhode Island’s Miriam Hospital, Dr. Norman Gordon says: “(Mellor’s book)…offers a wealth of information for caregivers, (while)…the mixture of prose and poetry is refreshing.” Two other Top Docs highly recommend my book, as do other Caregivers throughout the country.

I talk about the precipitating event in my husband’s Alzheimer’s—the accident in our retirement community of Asheville, North Carolina, 15 years ago, when he (in his Chrysler Sebring) was struck on a mountain road by a 12-year-old girl, driving a GMC truck. He suffered a broken neck and nine hour operation, choked on swelling the next day and died when his heart and lungs shut down. The triage team brought him back, but he suffered residual effects. During his two year recovery, his cognitive ability declined.

I cared for him for the next seven years but then I had my own medical crisis—a herniated disc, and then an adverse reaction to the pain medication I was prescribed. I went into a many week tailspin. I couldn’t function, couldn’t eat…couldn’t drive…lost 30 pounds. As sole caregiver, I had no support system, so when my doctor sent me for MRI, CAT scan etc. I had to bring my husband along, to sit in the waiting room, hoping he’d still be there when the test was over. I learned the downside of not having a support system and the cost of not taking care of myself.

Finally, I talk about how Alzheimer’s has gutted my family. My father, a high school principal, died seven years after his diagnosis; my brother, chief neurologist at George Washington Hospital and another brother, a lawyer in Arizona, both succumbed this past year to the dread disease. They follow two cousins who suffered early onset Alzheimer’s.

So, am I a caregiver expert?  Most assuredly. More importantly, I know what is lacking in the system–information caregivers need to survive and even thrive.

And that is why, I’ve become a guide for those who travel a difficult road, caring for loved ones with this disease, providing knowledge and tips I wish I’d had when I began my own journey.

Today, I invite all who might benefit from my many years’ caregiver experience to contact me for guest speaking at colleenkellymellor@gmail.com. My appearances span Rhode Island, Massachusetts, Connecticut, and Asheville, North Carolina, but I plan to go wherever I’m invited. 

Below is a sample poem expressing the frustration of a normal day of a caregiver with cognitively impaired loved one: