Snapshots of Dementia: Life Is Hard
Life is hard, and it might not get easier.”
Every one of our children knows this phrase well. While growing up, they often heard it from their dad (and eventually from each other as well as from me). It entered our lives as a line in an Amy Grant song, “We Believe in God.”
Tom is living this reality now. Life with dementia is increasingly hard, especially in this year that has seen a steeper decline in his cognition and abilities.
“What’s the hardest thing about living with dementia?” I asked him this morning.
He had just misplaced his coffee mug and needed my help to find it, so although he hesitated, he had an answer. “Well, two things. First, I can’t remember where stuff is.”
“Second …,” He gave one of his now-characteristic lengthy pauses, and after a couple of minutes had passed, I reminded him of the question.
“Well, second (another long pause) … I’m sorry, I don’t remember.”
“That’s OK, baby, I was just wondering what you thought. Is there something that really bothers you about having dementia?”
“(Long pause) “If I think of something later, I’ll let you know.”
I recently had to fill out a survey for an upcoming doctor’s appointment Tom has with the Brain Clinic at Emory University. It had to do with activities of daily living, a term health care professionals used to describe an individual’s daily self-care activities. I’ve filled out this survey before (Tom hasn’t been able to answer any medical questions on his own since 2018), but this time, I noticed that in more categories than ever before, I answered either “does not perform” or “cannot perform without help.”
The ADL questions referred to such activities as fixing meals, driving a car, and keeping track of medication. Tom can’t do any of those activities, and for most of the remaining ones on the list, he requires a lot of assistance.
What the questionnaire doesn’t reveal is how much assistance he needs. Although pet care wasn’t on the list, he needs more and more help in caring for his beloved box turtles. Last year, he could go out to our backyard pen and feed them on his own. This year, I go with him. He might forget that he’s not supposed to climb into the pen, which poses a fall risk. He might forget why he’s out there, and I remind him to give the turtles their food, which I’ve helped prepare. And of course without my reminders, he would forget that he needed to feed the turtles at all.
Other ways his life has become harder as his brain change becomes more marked include:
—Increased spills. Tom’s fine motor skills are deteriorating. He can still feed himself with normal utensils, but I usually give him a soup spoon rather than a tablespoon because it’s easier to use. At least once a week, he spills his travel mug of coffee on the floor or table, either because he forgets to put on the lid or because he can’t control the tremors in his hands as he lifts the mug. I now check his clothing before we go anywhere; although I haven’t moved to the step of having him wear a towel or bib, his shirts and pants often reveal what he has consumed that day.
—Continence concerns. His brain doesn’t always give him the correct signals anymore. Before our journey, I knew incontinence often came with dementia, but I didn’t realize why. As I watch it begin to happen with Tom, I understand. To achieve control in this area, children must learn to read the signals their bodies give them. In the case of someone LWD, the signals are crossed, no longer present, or the brain has lost the ability to read them.
—Confusion. Even when he’s aware of something, especially a change, it’s difficult for him to understand. At the start of this week, a severe storm knocked out our internet for nearly two full days. Tom knew the facts: We had no internet. But his reality—I can’t play all my normal games on my iPad—confused him. He came into my office or called out to me every few minutes to ask if we had internet, not realizing we had just had that conversation. He is also less and less able to operate the TV remote with accuracy, not understanding why he can’t get to the program or channel he wants. And of course, this confusion affects many other areas of his life as well.
—Emotional dependence. Last weekend, I took a work trip out of town from Friday through Sunday night. Our son came for the weekend, but our daughter Kristen and her family live nearby. She stayed with Tom until Andrew arrived on Friday, but after she left, Tom called her multiple times, concerned about why she wasn’t there and when she would be back. Whether we’re at home or away, I provide much of his emotional security, but once I was gone, he looked to her to fulfill that need.
Although Tom can’t tell me much about why life, especially life LWD, is hard, I know he still believes in the true point of that song, revealed in its opening lines:
“We believe in God/ And we all need Jesus/ ’Cause life is hard, and it might not get easier.”
Together, each in our own way, we are singing along with Amy: “He’ll be where you are/ And He will never leave you.” We know that no matter how hard life becomes, that promise holds true.
Herein lies our hope. Herein lies our peace. Herein lies our joy.
Even when life is hard.
If you or someone you love is LWD, how have your lives become harder? What adjustments have you had to make? Feel free to leave your comments below or on social media. Our story matters—and so does yours.
