Home for the Holidays

by Nancy Brooks

My Dad has been living with bvFTD for almost 15 years. When I was 20 years old I moved to Oregon, right around the time that my Dad, Mark, got sick. Back then, I would fly to Illinois twice a year, and bring him back to my home in Oregon for month-long visits.

The last time I saw my Dad, before the pandemic began, was in December of 2019. On that last visit, he packed his suitcase and said, “I’m going to come with you.” I explained to him, “No Dad, not this time. But I’ll be back in May to pick you up.” I could tell he didn’t understand, and I left in tears.

A few months later, COVID hit, and I wasn’t able to return in May 2020 like I’d planned.

Once travel was possible again, I moved my Dad from his memory care facility in Illinois to Oregon so that he would be closer to me. My husband and I rented an RV, and, with our two small children, drove across the country with my Dad, since he is no longer able to fly. When we picked him up, he didn’t know who I was.

My Dad lived with us for the first few months, until it became necessary to place him in a new memory care facility. Shortly after moving him in, COVID cases began to rise again, and I was told we wouldn’t be able to visit for Christmas. I was incredibly disheartened by the news.

Soon after, I was scrolling through my Facebook feed, and saw a post from AFTD about updates to visitation policies in Medicaid-funded facilities. There was a link to the federal document, which clearly stated that as of November 12, 2021, people living in facilities were allowed unrestricted visits with their loved ones. My Dad’s care home was not following these guidelines, so I took it upon myself to call the executive director and send her a link to the document. Because I had this information, I was able to advocate for myself and my dad, and I was granted entrance into his care facility on Christmas Eve! I packed my dad’s bag and brought him back to my house, where the next morning we woke up to a White Christmas! It almost never snows in the valley in Oregon, but over Christmas and the days that followed, we watched in amazement as over a foot of snow fell!

It was such a beautiful experience to get snowed in with my dad over the holiday. Although he can’t talk anymore, we sat together in the quiet morning hours before the kids awoke and watched the snow fall together. As he gazed peacefully out the window, I sensed that he was remembering. Later in the day, we set presents on his lap, and his two granddaughters climbed all over him, showering him with kisses and love.

I’m so grateful for the time we got to spend with my Dad, since it may be one of his last Christmases. I’m also grateful for this community that truly understands what we are going through, and to AFTD for raising awareness and providing timely information to families affected by FTD. This is a journey I never would have chosen, but I find comfort in knowing I’m not alone. Whichever season of FTD you are in right now, I hope that you too can find some moments of peace and solace this winter, perhaps gazing out the window at the falling snow.