ALZ isn’t just a disease for the elderly

ALZ isn’t just a disease for the elderly

Rebecca Doig’s Alzheimer’s reached the point of needing constant care when she was only 31.

Amy Norton was diagnosed at only 43.

At the age of just 39, Laura Borrell is one of the youngest people to be diagnosed with frontotemporal dementia, a condition that usually affects older people.

Early onset Alzheimer’s turns children into caregivers for their young parents.

…and then there were none

…and then there were none

I got the phone call on a Sunday morning at ten—my Aunt Selma, the last of four children, had passed at 8:00 a.m. at the age of ninety-six. She began running a fever on Saturday morning and died the next day. She led the kind of fulfilled life I wish on my dearest friends—excellent health, many children, grandchildren and great grandchildren; a loving husband who she adored; a caring community, a quick death. She’d led life on her own terms.

Selma was my father’s youngest sister—he was the baby brother and died in 2001 at 83 of lung cancer. Two of his three sisters lived well into their nineties—both developed severe dementia by the time they passed. The eldest sister, Ruth, had lost a long battle with breast cancer at the age of forty-five in the 1950’s. Treatment then was not what treatment is now. Selma’s husband was Ruth’s primary caregiver, administering her morphine several times a day. And though her parents lived close by and Selma just two houses down from them, my uncle was the only one up to the task. Ruth had become an unmentionable—a critically ill young woman whose life was being snatched from her—and the repercussions felt by the family were crippling. They never fully recovered from her loss. Ruth had been the first person to be buried in our section of the family plot.

Selma’s funeral service was held on a Tuesday morning in the town where she had spent much of her life. The cortège’s final destination was the site where my parents and husband, Stu, are buried. On the ride out, I was a bit apprehensive about seeing a few of my cousins—I hadn’t seen them since Stu died. Though his passing had been ignored by some of them, I never held a grudge. However, this would be the first time we’d all be together as orphans and the meaning of that wasn’t lost on any of us.

Though my husband’s passing had been ignored by some of them, I never held a grudge. However, this would be the first time we’d all be together as orphans and the meaning of that wasn’t lost on any of us.

When we arrived at the gravesite, I immediately began to look for my cousin Jean, who’d virtually cut herself off from the family after my dad died. She’d stopped returning emails and phone calls—in fact the only trace I could find of her was on her daughter’s Facebook page. Jean is Ruth’s oldest child, making her the oldest cousin in the bunch. As I approached her car, she opened the door and began to cry, ashamed she’d never acknowledged my husband’s passing and admitting she was carrying around a lot of guilt about it. When I let her know it wasn’t a problem, she began to cry again saying, “We’ve bitten off a lot more than we can chew.” I had a feeling I knew what she meant.

She needed help getting out of the car—seems her hips are giving her a lot of trouble. She reminded me she was eighty-six, but that had nothing to do with the fact that she’d been neglecting herself for over fifty years.

When her mother, Ruth, got her cancer diagnosis over sixty years ago, Jean was still living at home, so she naturally shared caregiving duties with the uncle who gave her mom morphine shots for several years. She continued to live at home for a few years after she married. Her father was nowhere to be found. Jean’s brother was in the armed forces at the time and of no use in terms of sharing the burden of care. After she had her first child, Carly, it was time to leave and make a home for her husband and daughter. Her mother died soon after she left.

She soon gave birth to another girl. They named her Betsy and she was truly beautiful. I was just nearing adolescence myself when she was born and I only remember her from the photos on my grandmother’s buffet. It felt like she’d vanished before I ever had a chance to meet her. At about eighteen months of age, Jean realized Betsy wasn’t learning the way her first daughter had. She was slow and developmentally challenged, and needed a great deal of care and attention. All we were told was that Betsy was retarded. That’s what they labeled it way back before the politically incorrect opposition brought the term intellectually disabled into usage.

So…not only did Betsy disappear from our lives, but so did Jean and her husband Dave. Invitations to holiday functions were always declined. Rites of passage were missed. Even intimate family dinners, which would have been made to fit their schedule, were out of the question. Betsy needed to be institutionalized and every free moment that her parents had was spent visiting her and caring for her however much they could.

Betsy needed to be institutionalized and every free moment that her parents had was spent visiting her and caring for her however much they could.

Jean decided to have one more child and this time it was a son—a healthy, bouncing, baby boy—but the family knew that Betsy hadn’t displayed any negative behavior until she was a year and a half old. So…the family waited for a final verdict. Would this new baby remain healthy? I can’t imagine what my cousin and her husband were going through at that point.

Their son grew into a robust boy and their fears were calmed. But Betsy remained the focus of her parents’ lives. Every weekend. Every single weekend, they’d go to see her. Despite their parents’ good intentions, Carly and her brother Bobby must have had a very hard time of it.

The extended family didn’t know how to handle any of this at all. When Jean did manage to show up for a get-together, no one knew how to “delicately” ask about Betsy, so it seemed as if no one cared. I was a teenager and wanted to reach out to my cousin, but was made to feel that kind of discussion was not encouraged. No one wanted to be more uncomfortable than they already were. Everyone ignored the elephant in the room for over fifty years. I never learned how to show I cared and that I was there to listen.

So fast forward to Selma’s funeral. Cousin Jean is helped out of the car by her husband Dave. She has neglected herself terribly. She looks wonderful despite all she’s been through. At eighty-six, she’s facing the grim reality that Betsy would most likely outlive her parents. Her other two children had relocated to Florida—at least they could be together—but Jean and Dave could only manage a day or two away from their daughter, now in a group residence and doing well. Betsy can’t be moved to Florida—disrupting her life is out of the question. It finally sinks in and I see—there was never any relief. No one was let in to share the burden of responsibility of their disabled child. No one could offer respite care so my cousins could get a much needed rest. All personal health issues had been put on the back burner until they’d reached calamitous proportions. Nothing else mattered.

Betsy had been born in the 1950’s, a very different world than the one we now live in. Shame and blame ruled. Jean and Dave must have wondered what they had done wrong for their child to be so troubled. There were no support groups for her parents and siblings and our family was not permitted to come to their aid.

Betsy has to be close to sixty now. She is still a child. Her parents see her almost daily and they face new challenges with every visit. The ride is not over and I pray that my cousin makes time to take care of her failing hips. There is no happy ending to this story. Oh, how I wish I could have made a difference. We buried Selma. All the aunts and all the uncles are now gone. The cousins all showed up. We’re now on the front line and I pray we’re there to support and care for each other in the years to come. I pray too, that we have learned it’s normal to be uncomfortable when someone you care for is suffering, and that none of us turn a deaf ear when one of us cries for help.

Image credit: Rashid Valitov / Shutterstock.com