Jadene Sloan Ransdell
September 05, 2024
Countdowns! There are many types of countdowns, and I’ve enjoyed a few throughout my seventy-six years. Of course, as a child, my sister, Jaren, and I had a countdown to Christmas. It started the day after Thanksgiving. (I’m old, and we celebrated holidays in real-time and calendar order when we were young.) One week later, there was a new year to countdown, then a countdown to my birthday. It was short – a mere seven days following the New Year revelry. When we began spending the month of July with our grandparents in Florida, Jaren and I fell in love with the rocket launches we watched from the dock at their Banana River home. As those launches moved from government secrecy to more public events, we delighted in the ten, nine, eight, until at zero, we held our breath, waiting for the bright orange flame and that unforgettable rumble. There were pregnancy countdowns and moving day countdowns. As a mom, I secretly counted down the days ’til school started in the fall after what seemed to be an endless summer. And, backward from one hundred, I counted down as I slipped into unconsciousness before a total hip replacement a few years ago.
I’ve begun yet another countdown. This one is different – it feels heavy, and I don’t know where I am on it. If it started at one hundred, I might be at ninety-eight, or I could be at fifty-five. I have no way of knowing, and I don’t think I want to know – not yet, anyway. This is the countdown of a diagnosis of a terminal disease. It’s a countdown I’ve been able to put off for years, but it’s now caught up to me. Actually, I’m an observer of this particular countdown because it is not mine. It belongs to my son, Matt, who was born with Down syndrome a little more than fifty years ago.
Ten years ago, Matt was diagnosed with Alzheimer’s disease. On that day, he was thirty-nine years old. He was too young, yet the neurologist was sure. No tests were run to rule out other possibilities. Instead, the doctor pronounced this life sentence on my vulnerable son, a man who had already lived a life filled with challenges. The staff accompanying Matt to his appointment explained that he had difficulty with tasks he had known how to do for many years. Matt seemed confused about what to do with his toothbrush; he needed more prompts to help with laundry. The list of changes that had been observed wasn’t long, but it was enough for the doctor to say, “Matt is almost 40 years old; he has Down syndrome, and now he has Alzheimer’s disease.”
There are many sources of information about Down syndrome and Alzheimer’s, so I won’t go into it here. Please be aware that while people with Down syndrome are at high risk for Alzheimer’s disease, it is NOT a certainty that every person with Down syndrome will eventually acquire it.
For several years, I believed that diagnosis. As I have done throughout his life, I jumped in with both feet and learned everything I could about Down syndrome and Alzheimer’s. I started a Down syndrome and Alzheimer’s Facebook support group. I got involved with The National Task Group on Intellectual Disabilities and Dementia Practices, the NTG. I became an Affiliated Regional Trainer, served on the board of directors, and co-facilitated the first online support group for people caring for those with intellectual and developmental disabilities who have an additional diagnosis of dementia. I worked with the National Down Syndrome Society that championed my dream for a conference focused on the needs of adults with Down syndrome, and helped them create their aging and caregiving programs. The more I learned, the more I wanted to do. As time went on, I found myself able to support and create because Matt was doing well. This disease was not progressing, and I came to a place where I believed that diagnosis was incorrect.
For the past year or more, I have noticed some things about Matt that concern me. Each by itself wouldn’t be an issue, but when observed as a group of symptoms, the pattern was worrisome. I spoke with some of the staff who are closest to Matt in an attempt to calm my fears. Sometimes, they reported they had not witnessed what I had seen, while at other times, they validated my concern.
Matt seemed to be slowing down – a lot. I rationalized that because I understood that folks with Down syndrome age prematurely. Matt’s body is functioning more like someone in their seventies. I know I have slowed as I have reached that decade of life myself. Matt is less animated than he used to be. He was always the life of the party and liked to be in the middle of all the silliness. Now, he sits, observing others in their shenanigans. Matt stopped signing “mom,” – indicating he wanted to FaceTime with me. He used to call two or more times a week, and now I can go ten days or more without a call from him. The essence of those calls has changed, too. It used to be that as soon as Matt saw my face on his screen, he would get the biggest grin and laugh loudly. Now, I rarely get that reaction. Instead, he looks at me with tired eyes or doesn’t connect with me visually. I tell him about my day, ask questions that he can respond to with a thumbs up or down, and sing his favorite songs. Calls that used to last for twenty or thirty minutes now may last only five before he waves and says, “buh’” for bye. More often now, the staff has to help him end the call, something he had learned to do with minimal assistance.
The big red flag came in July when Matt had a grand mal seizure. He’s had partial-complex seizures since he was sixteen years old, and they have been well-controlled with medication. A change in seizures is one of the signs that can indicate Alzheimer’s in Down syndrome. In the past few months, Matt has had more seizures – a significant change from when he only had breakthrough seizures after a few days of gastro-type illnesses. My heart grew heavy as I contemplated what this change could mean.
Last week, as I participated in a refresher of the NTG dementia training, I shared some of my concerns about Matt. That led to a meeting with one of my NTG friends—a chance to process the changes, determine if there was something we had overlooked, and brainstorm ways to continue to support Matt through his aging with Down syndrome.
Two days ago, Brian (one of Matt’s key staff), Michael (Matt’s brother), Kathie (friend, gerontologist, and NTG Master Trainer), and I met on a Zoom chat. We shared with Kathie some of the changes that Matt has been experiencing. My heart sank when she validated what I was grappling with. “Jadene, when we had lunch shortly after Matt was diagnosed with Alzheimer’s, I didn’t believe it was an accurate diagnosis. Today, I can’t say that. You have given me lots of indications that he’s progressing into the disease.”
I finished that call, hopeful that I could facilitate the team that supports Matt to continue to live his best life, even as this dreadful disease slows him. It wasn’t until I prepared for bed that reality hit me. As I slipped under the covers and put my head on my pillow, I fought tears I didn’t want to shed, I struggled with a sense of dread I didn’t want to feel, and was filled with a sense of urgency that I knew I needed to put off at least until morning.
And now it’s a new day. I have work to do to ensure that Matt gets every good thing he deserves. I’m starting with this: I will connect even more with the families I’ve met through the Facebook group. I will stretch into my discomfort zone as I reach out and ask for help. I will remember to care for myself so I may continue giving Matt what he needs.
Now, I’m working on another countdown. I’m counting down to one of Matt’s favorite holidays –Halloween. Folks, it’s just fifty-six days away! That’s fifty-six days his staff and I can help him enjoy the spooky, funny ghosts appearing in stores and the yards of neighbors and friends.
Matt has always been my best teacher, and as this Alzheimer’s countdown begins (one that I don’t relish), I know I will continue to be his best advocate. As we countdown with Alzheimer’s, I’m also counting up. I’m counting all the ways we can celebrate the life we share and all the days we still get to love one another.
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