Snapshots of Dementia: The Rest Is History

Posted by Marti on July 15, 2022 in Alzheimer's Disease, Caregivers, Dementia | 7 comments

I mentioned in my last post that I had the privilege of having some time away, and I’ve also written on social media about my amazing trip with my mom (her ninetieth birthday present from our family). This was a bucket-list item for her, a small-boat cruise off the Atlantic provinces of Canada, but it ended up being the trip of a lifetime for us both!  

Mom and I share many of the same interests, including a continuing love of learning. This trip was perfect for us because not only did we get to see lots of amazing sites—including Sable Island, a coveted destination spot that boasts its own herd of 500-plus wild horses—but Adventure Canada brought biologists, anthropologists, naturalists, and more along to help us understand and appreciate everything we saw. Mom and I will be forever grateful for the many growth opportunities as well as the wonderful new friends we met. 

During our trip, I also discovered some things about myself and my caregiving situation. Here are five things I learned during my time away. 

1. I needed a break: The first few days of our trip, I slept. A lot—ten to twelve hours at night with some daytime naps as well. I was amazed at both how tired I was and how good it felt to get enough rest! It also took me those first few days to realize that I’ve been living without adequate rest. I plan to correct that because I enjoy the way it feels to have sleep, and I know it is much better for my life and my health in general.  

2. Caregiving carries with it a unique level of stress. Yes, this is closely tied to point 1. But wasn’t I also a caregiver on my trip? You might think so, but my mom is amazingly sharp, with only mild, age-related cognitive decline. I did have to open the heavy doors, carry our bags, and watch out for her on stairways and hikes, but I did not have to make all the decisions, ensure her safety every time we went anywhere, and carry a private concern that she might say or do something inappropriate. Those are all part of what makes even a simple trip to the grocery store with Tom an increasing challenge.  

3. I now view the world through a caregiving lens. I tried hard not to talk about Tom or caregiving all the time (although I’m not sure my mom would say I succeeded). I do know that he was often in my thoughts, and I realized for the first time that I now relate to much of the world in terms of my caregiving responsibilities. I didn’t tell everyone I met about Tom’s dementia, but whenever I spoke to someone at any length, it seemed to come up. One of the experts on our trip works for Birdlife International, and on a zodiac ride I shared with him, I found myself telling him the story of how much Tom, as a person living with dementia, enjoys watching the birds who visit our feeders—and we were only together for a few minutes!  

4. I’m not irreplaceable. Our daughter Melanie, who lives in Indiana, came for nearly three weeks so Tom could remain at home. She can work remotely from here, so his day looked much like it normally does. Our nearby daughter and son-in-love also came over with our grandson, and our son visited for two weekends in a row, plus our daughter from Atlanta also came over to help out. But it didn’t take all these people to replace me! Melanie handled everything just fine—just as I knew she would. What most reassured me was knowing that she wouldn’t just keep her dad safe but would make sure he had fun in the process. Few caregivers have the opportunity to leave for a few days, much less two weeks-plus. I intend to take more intentional breaks, albeit shorter ones. 

5. Home is good. Yes, it’s good for Tom, who feels increasingly comfortable at home and can get upset when he’s away. But it’s also good for me. For the last few days of the trip especially, I was eager to see him and make sure everything was well (despite my aforementioned trust in my daughter). In fact, because of his dementia-related apathy, I’m fairly certain I missed him more than he missed me! It also feels good to cook a meal, to clean the house, to take care of the birds and flowers, and even to take Tom for one of his beloved Wendy’s Frostys. Travel is refreshing. But home is good too, and I’m thankful to have one that’s so perfect for our needs during this time especially. 

If you’re a caregiver, have you had a chance to take a break? What did that look like for you, and what did you learn? Feel free to share your response in the comments below or on social media. Our story matters, and so does yours.