Snapshots of Dementia: Living His Best Life

Snapshots of Dementia: Living His Best Life
Saturday, June 24, 2023 by Marti

*Tom with Lincoln and Lando, Father's Day, 2023*

When I made the decision to sell our home in the Orlando area and move to South Carolina to be near family, I often told people I hoped to “give Tom his best life.” At the time, I had little idea what that meant.

So how do we give Tom his best life even while his brain continues to change? I'm still figuring it out. But here are some of the things that seem to help, despite many mistakes along the way.

— ROUTINE: I’ve mentioned before how Tom can easily become agitated if too much of his routine changes. He likes to go out and enjoys being with friends and family, but he likes being home even more. We haven’t done much traveling since his diagnosis, but I’ve learned that trips go much better if I can keep mealtime, bedtime, and time for playing games on his iPad as close as possible to what we do at home.

— FAMILY TIME: We spend most Friday nights with our oldest daughter and her family, who live nearby. Tom looks forward to this routine and especially to time with our two young grandsons. He also enjoys holidays, birthdays, and other family events. Earlier this spring, our youngest daughter blessed us with two week-long visits. And although our son hasn’t been here as much as he anticipated, every time he returns, Tom gives him a big hug and says how much he missed him. Relationships have always mattered to Tom, but while LWD, family seems to matter even more.

— SOCIAL/SPIRITUAL: Attending church and singing in the choir and senior choir are becoming more challenging for Tom, but he still enjoys both. We stay active at church because it’s long been our priority and also because it’s a safe and healthy place for Tom. Friends there have consistently shown their concern for both of us, helping me get him safely from one place to another and making sure he’s not left out or left behind. I have long believed that those with cognitive challenges can still have a strong connection to God, and this holds true for Tom today.

— DIET: I wrote here about some ways caregivers can stay healthy, and those choices have had an impact on Tom. I don’t experiment with new dishes too often; with his love for routine, familiar foods and longtime favorites make him happy. And although (with his doctor’s permission) I still ensure he has regular Wendy’s Frostys and other treats, I have shifted his diet to include more fruits, vegetables, and whole grains. Living his best life means staying as healthy as possible while his brain continues to change.

— MEDICAL PROFESSIONALS: I can’t overemphasize the importance of a great health care team. Tom has developed other health issues alongside his dementia, so he sees some specialists in addition to his neurology team at the Emory Brain Clinic. The key piece, however, has been not the great neurological care but an excellent primary care physician. Our doctor has great insight into Tom’s dementia and shows concern for him as a person, not just a diagnosis. She also sees him once every three months, an extra reassurance for both of us.

— COMMUNICATION: As Tom's communication challenges increase, I work harder to understand and anticipate what he wants to say. I try not to interrupt or take over for him, but I can sometimes gently guide him to finish a sentence or return to a forgotten thought. If I realize he’s stuck, I can often summarize what he’s said and give him an easy out. I may also step in to restate someone else’s question or comment if I can tell he couldn’t process it.

— SENSITIVITY/FLEXIBILITY: Just as the parents of a young child must discern that child’s unspoken needs, so must the care partner for a person LWD. Because Tom may be unaware of his own needs—or can’t communicate them well—I’ve learned to watch for changes in his attitude or actions that may signal a problem. I now sit near him in choir so I can help keep him on track. When we’re going out, I plan to leave earlier than pre-LWD so I can adjust for last-minute issues, and I'll continue making changes to support his needs.

As Tom’s brain changes, my schedule does too. He's my most important responsibility, so I often get up from my work to help him with a word game or make sure he’s safe moving around the house. I try to schedule his medical appointments in the morning or early afternoon, better times for him than late in the day. Since I don’t know how he will feel or function on any given day, I don’t schedule many activities that require an advance commitment.

— LAUGHTER: We still find a lot to laugh about. Our grandson gave Tom a card that plays music when opened, and I regularly open it and bust some moves just to make him laugh. I make up silly little songs to familiar tunes, also to make him smile and because music connects with those who are LWD. And of course, photos or videos of our grandsons or our two foster grandchildren almost always brings a smile.

I know that one day, Tom will live a life much better than the one I can give him now. One day, I believe his thoughts and speech will be clear, he will move with ease, and he will play his trumpet with more grace and power than ever. But until then, I’m asking God to help me keep giving him his best life—whatever that may look like.

The specifics will change with the individual, but many of the areas and ideas listed above will apply to others. If you or someone you love is LWD, in what ways do you help them live their best life? What have you found that is less than helpful? Feel free to share your thoughts on social media or in the comments below. Our story matters, and so does yours.

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