Discovering The Unlikely Gifts of Dementia

Make no mistake. A diagnosis of dementia is not something to put on your wish list. Mom received the devastating diagnosis approximately ten years ago. She did what she could to delay its progression but even her fortitude wasn’t enough to fend it off.

Watching the erosion of independence and cognitive function in someone who was always so fit, smart, and strong has been heartbreaking. The angst of seeing a loved one decline or the strain on Dad as he struggled to understand and care for her was gut-wrenching.

Yet even in the darkness and confusion, as her filters eroded, glimpses of a personality she’d kept under wraps, or comments she’d withheld, have surfaced. It’s those tender moments I cherish so much.

In early 2016, Dad’s personal resources to care for her were stretched. I’d just had my second shoulder surgery a week earlier and had driven two hours to take her shopping. They were still in their apartment, with strict instructions not to leave her alone. He’d escape for brief reprieves anyways, which was where he was when I arrived. During that outing he fell, broke his hip, and was admitted to hospital. I stayed with her that first night trying vainly to sleep, let alone be comfortable, in his easy chair.

Mom spent the night pacing, looking, and asking for him, confused about what had happened. When she padded out of her room again around 6:00 a.m. I pretended to be asleep, hoping she’d go back and rest. Instead, she came over, straightened my blanket and tucked it up around my chin, like you would with a child. She’d never been one to demonstrate affection and I was incredibly touched.

As a family, we made the decision to place her in long-term care, something Dad had been unable to do.

Mom had worked hard to achieve her dream of becoming a nurse, at a time when her family was strained to make ends meet. She’d gone on to complete a post-graduate nursing education, a rarity for those times.

After she and Dad married and started a family, she’d returned to nursing as soon as she could. She supplemented their farm income with work she was passionate about into her late sixties.

Once in long-term care, she resumed her nurse role, always in charge. She’d have to get back from outings so she could work. She still introduces other residents as people she works with. Nurses include her in staff meetings. I’d never appreciated how strongly her identity was wrapped up in her professional role, or how proud she was of her accomplishments.

No matter how bad things got, she was always grateful for what she had. No doubt her father, Gerhard Reimer, handed down that legacy. After being allowed into Canada as a refugee in the 1920s, he thanked God every day for his freedom and the opportunity to live in this land.

My parents prayed at least twice daily, always starting with a list of things they were grateful for. The few times I’ve been with Mom at bedtime, I tuck her in and stay with her for prayers. No matter what time period her mind has taken her to, she expresses gratitude before asking for anything.

A few months ago, she needed dental surgery to remove eight remaining teeth. A general anesthetic was the last resort and we thought she could handle the extractions in the dentist’s chair. She’s good at accepting direction from medical authorities.

The first freezing didn’t take and she became anxious. The oral surgeon hesitated to continue but I calmed her down and he let me stay while he administered the second dose—multiple needles. While he was out of the room giving it time to take effect, she sat with her arms crossed over her chest. “Go and get him and let’s get this done,” she said. She moaned and winced, clenching my hand until I thought she’d crush it, but keeping her mouth open until he finished.

She was raised to be stoic. There was no time to waste showing feelings or pain. Deal with what needs to be done and move on. That can be an asset as well as a liability, but what struck me was how engrained it was in her. She’d lost so much, yet the stoicism held firm.

It carried her through the loss of Dad last year. In the moment, she knew what was happening but then it was gone. She asks for him and we try and follow wherever she’s going. Once she told me, “He died, you know,” and I knew she knew.

The greatest gift of all has been the opportunity I’ve had to care for her and speak openly from my heart in a way I never could until the last few years. She somehow responds to that in kind and those intimidate moments with her are precious beyond imagination.

I tell her how much I love her, what a good mother she’s been, and how it’s now my turn to look after her. Although she doesn’t like being cared for (or being sentimental), it’s such a gift for me to be able to do so. Sometimes she’ll look me in the eye and say, “It isn’t easy living like this.” And I know she knows.

The stoicism and fortitude that carried her throughout life’s challenges now helps her deal with dementia and immobility. Those glimpses that shine through from time to time have helped me get to know her better than at any time before dementia.

As she gives me the gift of who she is, she’s giving me her best. It teaches me a lot about who I am.

Endorsement

“Stories change us. Liz Jansen’s story is both an adventure and a mesmerizing process of excavating the meaning, messages, and magic embedded in our everyday lives. Her journey is an invitation to be awake to the story our lives and the lives of our ancestors is telling. And that kind of story heals the heart.” ~ Oriah Mountain Dreamer, author of The Invitation

Interested in learning more about discovering the story your life and the lives your ancestors is telling, read Crash Landing.

Photo on Foter.com