(Part 1 of 2)
By Samra Bufkins
December 26, 2015
First, I hope everybody reading this has enjoyed a wonderful holiday season, whether you’re celebrating Christmas, Chanukah, Kwanzaa, or any other of the many holidays celebrated in December.
It seems like “the hap-happiest season of all” is fraught with stress for many people and for a variety of reasons—some self-inflicted, and some out of our control.
The hashtag in the title of this blog was used by my friend Mary Jane Mudd in a Facebook status update, and it inspired me. Mary Jane’s daughter Mackenzie has Tuberous Sclerosis (TSC), a rare genetic disease that causes benign tumors to grow on vital organs and often causes autism, developmental disabilities, epilepsy and more.
Her status update around midday on Christmas said it all:
I could have used that hashtag to describe our Christmas—and so could many of the families of the 5.3 million Americans living with Alzheimer’s Disease. Because the only predictable thing about Alzheimer’s is its unpredictability.
Like many living with this disease, Bill goes through long periods of “stability,” meaning I can predict what he’s capable of doing and tailor activities for him (and tailor my expectations of those outcomes).
He wants to help. He needs to feel like he’s contributing. He handles the trash and recycling (not always well), kitty litter and feeding (they’ll tell him when that needs attention), and likes to make my morning tea, juice and breakfast. He can still make an awesome omelet, although lately some interesting ingredients have appeared. But I digress….
He’s very social, but lately he’s had trouble with grooming and dressing details. Before our recent church choir concert, one of the guys had to re-tie his tie so the skinny side didn’t hang below his belt with the wide part mid-chest.
School is out and his Wednesday Stepping Stones group isn’t meeting, so our routine is off. I notice he moves much slower than he once did, and it takes longer to do things that used to be done with ease and speed. But I’m accustomed to that.
What I’m not accustomed to is the speed at which things can change for the worst.
Take Christmas Eve, for example. We had a busy day—our amazing neighbor Jim took it upon himself to fix two gates (I had bought the wood but hadn’t gotten around to fixing them yet) and cleaning our gutters (we have 25 oak trees, and elm and a cottonwood on 1/3 of an acre and the leaves fall in spurts from October through early spring). I ran errands a couple of times and we took a gift to the neighbors before time to head to church for Christmas Eve services. The choir has a potluck between Masses so there was wassail to make and tamales to pick up, music to organize and the car to load. We ate a big lunch about 1 p.m. and snacked on cheese and fruit all afternoon—or at least I did. Bill had a big glass of eggnog right before we left the house.
We’re Catholic, and therefore required to fast for at least one hour before taking Holy Communion. Communion comes about 30—45 minutes into the service so I always time our eating to stop about 30 minutes before Mass. Christmas Eve is different, though. We sang a Christmas cantata beginning at 7:30, then Mass started immediately afterward at 8. We needed to arrive at 6:45 to warm up and do sound check with the brass quartet. And because I had two crock pots to plug in we left the house at 6:15 to allow time to set things up in the kitchen without rushing.
By the time we were standing up singing the Christmas Eve Psalm, it had been more than 2 hours since Bill had eaten or drank anything.
I didn’t see it—the men sit behind the women—but I saw our choir director’s expression and turned around to see Bill sitting, completely colorless and clearly uncomfortable, and about to burst into tears. Mark, the “choir buddy” who makes sure he’s on the right page, gave him a bottle of water and motioned to me that he was OK. But he wasn’t. He had that gray pallor people get when something is really, really wrong. And all the while we’re still joyously singing “Today is born our Savior…..” (Musicians are good at multitasking.)
As soon as we finished the Psalm and sat down our director whispered to one of the sopranos on the front row “Bill needs help.” I was sitting there paralyzed—we’re in the middle of Mass, it’s crowded, and we’re getting to the most solemn readings. Like a fool I was worried about creating a disturbance, but Susan (who has a special-needs sister and is used to “stuff happening”) sprang into action and said “let’s get him out of here.”
It was hot inside the crowded church, and as Susan took Bill’s hand to lead him out I steadied him with my hand on his back and noticed he was really, really hot. We got him outside in the cool breeze and Gracie, a friend who’s a nurse, followed us.
He couldn’t articulate what was wrong. “I feel empty” he sobbed.
I kept asking him about the usual heart attack symptoms—pain, nausea, shortness of breath—but all he could say was “empty.” And he would burst into tears. An usher offered to call 911, but we declined–for the moment.
He soon felt cold so we went back inside and found him a chair in the reception area. Gracie asked for orange juice and food and I ran to the kitchen for a sandwich, cookies and juice. Bill then asked for a Coke, which was also easy to find.
I could hear Deacon Jim’s booming voice giving the homily off in the distance as we watched the color return to Bill’s face and the sparkle to his eyes. Gracie checked his pulse and we mutually decided he wasn’t having a heart attack, as I feared, but was just woozy and lightheaded.
When he started cracking jokes in a New Jersey accent we knew he was back. On Gracie’s recommendation we took both a Coke and bottle of water with us and waited until the congregation was standing for the Creed and the ushers were moving around in order to re-enter the sanctuary without additional commotion.
Mass was completed without incident, we shared a great meal with the musicians, and the 11 p.m. Mass went just fine (although he had water and a Coke under his chair for security). By then the A/C was set on “freeze” and we were all suffering from hypothermia, but I digress again.
Everything’s a lesson
Every time something happens I go over it in my head to find out what I could have done differently. Basically, now I need to be a mind reader and better time-keeper. From what I’m learning about the disease, someone with Alzheimer’s may feel lightheaded but won’t connect that with a drop in blood sugar from not eating for hours. He or she might not be able to articulate how they feel or even think to say something. They lose track of time, and unlike the rest of us can’t say, “I better eat something since Mass is later and longer than usual and I don’t want to feel uncomfortable.” They can’t anticipate because they can’t remember what happens when they go without food or water.
They live in the moment, and sometimes that moment is really, really short.
Another thing to add to the list. Another thing to be vigilant about. The major crises are easy to deal with compared to the day-to-day beatdown of “little things” that add up to a lot of aggravation, a lot of fear, and a lot of loss. Each setback, no matter how small, is a reminder that they are slipping away from us every day.
Are you a caregiver to someone with Alzheimer’s or another dementia? Feel free to share tips or stories in the comments below.
Postscript: Mackenzie recovered from her seizure in time to play with her new Nintendo and go see Star Wars: The Force Awakens (without seizure despite all the special effects) with the family Christmas night. For caregivers of people with chronic conditions, the abnormal is normal and everybody adapts. It’s how we survive.