BARRY’S JOURNEY No. 18
The case of the missing shirts
Musical shirts
I try to visit Barry at least twice a day at his care center. I ride my bike there in the morning to get my exercise in and then try to get there in the afternoon with a treat from Dairy Queen.
On nice days we sit outside, or I take him to an activity if one is scheduled. Some spouses are there all day with their loved one; others come to say good morning or good night. I haven’t found a rhythm yet because I’m not retired and have to work. But I try really hard to be there for Barry and keep an eye out for anything that might be wrong with him. He can’t tell me much about how he is feeling.
What’s for lunch?
Sometimes I help feed Barry his lunch. If you want to go on a diet, take in lunch at a care center. It will take that appetite right away! Barry’s food is all soft so he won’t choke. Ever seen a puréed barbeque sandwich? It is so unappetizing that I can’t even think of eating for hours after a visit.
When I moved Barry to the care center, I took my trusty Sharpie permanent marker and marked all his clothes with a large MCCOOL. It’s kind of like going to camp! But as time went by, he never had any clothes in his closet! Where were they going?
The case of the missing shirt(s)
One day I was feeding Barry his lunch and looked over at Barbara who sits at his table. She was wearing Barry’s shirt. I knew it was his because it was a pink and green polo shirt from Gap that we all teased him about when he bought it! Well, Barbara can’t talk and the shirt looked pretty good on her — so who cares.
But this last week, I walked in and saw another gal wearing a Tommy Bahamas shirt that I knew very well because I bought it for Barry years ago. A few days later, I saw her in another one of his shirts. Now I know why he keeps running out of clothes. I wanted to complain, but this morning when I rode my bike to see Barry, there he was in the wrong room, dressed in someone else’s really nerdy sweatshirt — one he never would have been seen in before he got FTD. When I brought him back to his room, he was holding a remote that did not go to his TV, and in his closet were slippers with a camouflage design that definitely were not his.
I guess I am not going to complain about his missing shirts. They may find their way back to his closet! It’s just like musical chairs, except with clothing.
I remember this very well….Once Paul got some clothes back in the laundry, some pants, that were obviously for a woman about 5′ tall. He was 62″….It was all crazy, all the time, but so much a minor problem compared to everything else that was happening! You just have to smile……
Thanks for the post, Nancy! It brought back memories of my grandfather when he was in the nursing home and was likely suffering from Alzheimer’s, though we didn’t call it that way back when. He was next door neighbor to one of his long-time friends, Michael. They shared a bathroom between their rooms. One day when I visited, they both complained of blurry vision, so I promptly washed both pairs of glasses and returned them to their rightful owners. They thought I was a miracle worker. Your post today gave me pause to think about my loving and kind grandfather. You are amazing, Nancy, and your ability to share your stories so openly and honestly helps us all to embrace the human experience – and our own uncertain futures – with a healthy perspective. Thank you.
It humbles me to see how you find humor in even the most dark of situations, no matter how odd and painful. Reminding us that each and every sunrise is a gift, and each day is meant for us to spread happiness to others. We love you both NoNo, and I still disagree with you about Kelly rolling down that hill at the cabin.
Nancy thank you for your posts, I think of the both of you often. You are a very very strong person. You talk about food being puréed reminded me of my mom in care after a broken leg. She also had that and asked the help loudly if they were serving everyone dog food. Is there anything I can do for you maybe dinner some night again.
I got a kick out of this post. It’s sweet and sad but kinda funny!! Hugs!!
Your voice is strong and humorous. I wish we could all just visit Barry and let him know we think of him a lot.
I see this as a great doodle at the animal care center! Thanks for sharing
Nancy, I just found your blog through the AFTD website. I read through all of the Barry’s Journey posts and some of your hike posts the last couple of days. My husband was diagnosed in September 2010 with FTD; our life had already become surreal by then. Thank God I started watching our money before then because he was running through it like water. I had to place my husband, his name is Kaye, October 2012. Our road has been very similar to yours and Barry’s. There are days when he seems so sad and I wonder how aware he is of his situation but for the most part he is unaware of his dementia – if I ask him how he thinks he is doing with the FTD,he says he is getting better. Thank you so much for writing your blog. It helps to know others are going through this, although I’m sorry anyone has to go through this. I hope all is well with you today.
Thanks Mary. You are so lucky you caught the money thing early! Hope you are coping and finding time for yourself. I found less time now that he is in a care center. It takes a lot of the day going to visit. Thanks for reading my blog!
Nancy,
I haven’t responded before but I have been following your journey with sympathy and admiration. I know a little bit about this because I cared for Lou, my partner (and Barry’s teacher in GC), who had Alzheimer’s. Your blog is a gift to us and hopefully to yourself. You are teaching us things we might be afraid to know; you allow us to be there. And you are making a caring community for yourself. My thoughts and very best wishes go with you.
Thank you Joyce. It has been a tough journey as you know..the blog helps me say things when I need to.
Hope all is well with you are your art!! NC
Dear Nancy,
I think of Barry and you often. It’s a very sad situation, but he is blessed
to be surrounded by a loving family and YOU!
Love, Linda Oberpriller
Thanks so much! I know Barry would love to see you if you ever have the time!
Hope all is well with you!
xxoo NC
So grateful I found your blog. The most information I have found in one place. My husband diagnosed FTD April 15 brought on by chemotherapy. In assisted living by June, in hospital now, and searching for someplace that will take him. Our journey has been a very unbelievable six months from normal, fully functioning to this.
Your writing n art work around such a difficult time is inspirational.