A huge weight lifted
November 2017
On the anniversary of Barry’s death, I knew it was time to visit the care center where he lived for the last three years of his life. I had no excuse because the bridge to get there finally reopened and there were no detours to travel. Besides I had promised myself that on the first anniversary of Barry’s death that I would try to do something nice for the staff on his floor. I went to drop off a check so they could order food in when they worked a double shift.
I had spent a year avoiding the place. It is still the most painful part of Barry’s journey with FTD. Memories of all the other tough times are fading, but the image of him lying in bed, being changed and fed by the staff still sends me down a rabbit hole of extreme guilt and sadness.
I also feel very sad that I wasn’t there with him on his last night alive. Since then I have been told that most dying people want to do it alone. But then why did he hang on until I arrived that morning? He died just a few minutes later.
All these thoughts were with me when I drove up to the care center. Everything looked the same and my usual parking space was open. My friend Cathy was at the front desk like she always was, and I got a big hug from her. The same guy who couldn’t talk was still sitting by the front door. But now he was missing a foot.
Barry’s old floor also looked the same. Lori who works the floor desk was there, and I got another big hug. It was good to see her. She saw me at my best and worst and always had a positive thought for me. We also joked around a lot.
One nurse called out, “Hey, it’s Nancycarlson.com.” That’s the name Barry called me until he lost his speech. The same cook was there. We reminisced about when Barry started saying Fuck You over and over, how she would stick a Popsicle in his mouth, which stopped him from swearing. She told me she missed him. As I walked around, I saw some of the same people in their same rooms. The piano was there as was the water cooler that my granddaughters loved to play with. The same worn-out Thanksgiving decorations were up as well.
But some things had changed. The place had been sold so it now had a new name. The horrible carpet in the TV room was replaced with a wood floor. Someone new was in Barry’s room, of course, but the bed was still in the same spot. There was a new man with FTD on the floor, who was in the same phase Barry was in when he arrived — repeating the same movements over and over again. I know from experience that will not last.
When I left, I realized that something else had changed, and it was me. First I felt a huge sense of gratitude for the staff who really cared about Barry and did a better job taking care of him than I could have. I felt a huge weight lift from my shoulders after the visit. Maybe it was all that guilt leaving me. Perhaps it was because I am now a different person than the one who went there each day, always worried and crabby. I realized as I drove home that I am getting used to being happy again. It is a wonderful feeling.
So good! Glad for you!
I am happy for you. I can only pray that some day I get there too.Keep strong, Nancy.
Nancy, your honesty and openness is a gift. You so fully deserve to be happy again. The pain of the journey with Barry is only knowable to many of us through your words, although I personally know it more intimately because of a mutual acquaintance with FTD. It’s a devastating journey to go through, and I admire your willingness to share the pain of it all as honestly as you have.
Sending you hugs. You made it through a difficult journey by “putting one foot in front of the other.” Some days I don’t know how you did it, but you did. I’m glad you’re letting some of the pain and guilt go. I’m sure Barry wants you happy, as do we.
What a journey you have been on! Coming out on the side of happiness is a success! Sending good thoughts to you Nancy.
Yes, there is still Life on the other side of the equation. You are healing and productive. Your family surrounds you with love. Being a caregiver is taxing, yet we feel guilty. We are not selfless, should we be. Now a new chapter for you, filled with adventures and joy.
Keep on! And move on ahead. It’s time to be you.
I am so happy for you!
Oh Nancy! We are so happy for you that you are on the bright side of the journey. When the tank is empty, it takes time to fill it back up. My wish for you is that each day brings a little more joy, and that joy fills you up each and every day. Continued peace and love to you.
I am so happy for you. You went through so much and now it is so good to know it is time for you. Bless you as you move forward with new adventures.
Hugs to you Nancy
Thank you for your courage, eloquence and honesty. It’s wonderful that you have found a way to find happiness…you have brought so much of it to others.
What a wonderful detail—I didn’t know Barry ever called you nancycarlson.com. Geez, he could really be funny and enlighten us even from a place we couldn’t reach. I miss him.
Such a journey, Nancy. I’m glad that happiness has returned to your life.
You areawindeful story teller. You had me right there in the nursing home which I remember visiting with you. And seeing poor Barry. You were so loyal and devoted Nancy. You also made it through with dignity, humor and strength.
Much Love
You know there’s no limit to happiness…may 2018 take you on many new journeys! Thanks for sharing.