by Pamela McReynolds

When FTD symptoms entered our lives, everything changed. My husband changed, I changed, life as we knew it changed. I distinctly remember the day he told me, “If I ever do anything to hurt you, please know it’s not me.” My heart sank as I realized how broken he was. Taking his hand in mine I simply said, “I know.” Sitting there, holding hands, we both felt the fear that our lives were over.

The more we learned from the stories of others touched by this disease, and the more we came to terms with the prognosis, the harder it became to hold onto hope. But we had faced hard things before, and were determined we would get through this together.

Uncertain of how much time we had left, we immediately planned two bucket-list trips. Sadly, both were marked by explosive and difficult situations arising from my husband’s illness. The second trip resulted in a 911 call to the neurologist and an emergency medication increase. I was also lectured about the folly of upending the routine of a person with dementia and taking my husband into strange surroundings. Undaunted, I carefully analyzed the situation, discovered what had triggered the behaviors, and made appropriate changes that allowed us to thoroughly enjoy the rest of our trip.

Our desire to live life to the fullest, continue traveling, and maintain some degree of normalcy set me on a mission to figure out how to continue creating positive experiences in what often seemed like an impossible and hopeless situation. Researching, reading, asking questions, and seeking answers, I became my husband’s advocate in all arenas, and we refused to accept that his life was over. As I learned more, I implemented small changes to deal with the most pressing issues, including two major triggers: noise and overstimulation.

I made adaptations to our living environment, such as installing a rubber sink mat and lining ice cube bins with craft foam to dampen noises that seemed to agitate my husband the most. I also placed rubber bands around jars and cloth napkins between dishes to muffle any “clinking” sounds. I learned to avoid restaurants and other crowded venues when traveling, and to always have an “escape plan,” or at least a designated place to retreat and rest. We also stopped staying in the homes of family members, and planned shorter visits with frequent breaks.

My husband now has a Bluetooth headset that blocks noise and helps to keep him calm. I’ve learned to avoid arguing, and to simply listen to what he wants to say. I also give him plenty of space and alone time to avoid overstimulation.

As our situation progresses, we accept change as inevitable. At each turn of the road, we reevaluate and adjust accordingly.

My advice to other spouses, loved ones and care partners?

• Take deep breaths.
• Know that every situation is different — don’t be afraid to find what works for you.
• Establish and follow consistent routines.
• Figure out behavioral triggers and seek solutions and ways to avoid them.
• Learn how to assuage your loved one’s distress when they do get triggered.
• Become an outspoken advocate.
• Prioritize taking care of you.

Self-care is crucial for maintaining mental, physical, and spiritual strength. My practices of rising early for devotions, prayer and journaling, and taking a daily walk in my yard are some of the things that keep me strong.

Change is an inevitable part of life. Everything changes eventually, and what I have learned is — hope can be found and nurtured, even in the midst of this change.