Monday, February 13, 2012

Who were they before...

Today is the 21st day that Billy has lived at Lexington Place. I'm sure the time has gone much more quickly for me than it has for him, but it's hard to tell.  The sense of time becomes warped for those with dementia. Many times Billy thinks ten minutes is an hour, or he talks about something he says happened a few years ago that was actually fifteen years ago. I'm not certain how long he thinks he's been at the new place, but he seems to be settling in somewhat. He's never really ready for me to leave, but he doesn't fuss too much. He often thinks he's leaving with me, and I still have a jab in my heart each time I tell him he's staying there for the night. But he's calmer. 

The first few weeks were difficult for Billy and those who cared for him. The nurses asked me several times what Billy enjoys doing in hopes that they could redirect him during his times of high anxiety. Sadly, I couldn't think of anything. He loved reading until it became so difficult for him. He worked crossword puzzles up until about eighteen months ago. I called one of the caretakers at the Cottage, and she said they struggled to find something for him to do. He did word searches for about a year, and then he got to where he would just underline the words to be found. I went to pick him up Sunday afternoon, and when I entered I found him sitting at a table with three little ladies, coloring a Christmas tree. I was happy to see him sitting calmly, but it's hard to describe the feelings I have when I think of how much he's changed. Billy read voraciously, wrote beautifully, and was full of knowledge in most areas of American and Texas history. Our kids went to him when they needed to write a paper, even though I was a writing teacher for years. And now, he's doing coloring pages. I hate Alzheimer's Disease.  

It didn't take long to develop a routine for the evenings. Sometimes, though, I have a crisis at school and, those are the times I get there later than I like.  I try to be there by 4:45, so I can take him to the main dining room which is a much more "normal" atmosphere than the one in the "unit." We sit at the same table with a man named Bobby who sits by himself when we are not there, and I believe it's by choice that he sits alone. Bobby greets us and smiles each evening, and then he says nothing else throughout the meal. He eats the same meal each and every night - two bologna sandwiches on dry white bread and two cartons of 2% white milk. Actually, he doesn't always eat, but he is served the same meal each night. The servers tell me that is all he will eat. Billy's appetite varies. Some nights he eats every bite and would eat more if offered. Then he has nights when he eats very little. I like when he eats all of his food because it's a signal to me that he feels well. 

After Billy finishes his dinner, we go back to the "unit" and  watch television in the sitting room. Shelley and Andrew have often joined us by that time. As the other residents finish up their dinner, various ladies come to join us in the sitting room. They enjoy visitors, and we enjoy them. Two of the ladies are like school girl friends. One often leads the other by the hand, and they sit together on the couch. We don't understand anything that either of them say, but they are pleasant and like to join us. We often have the two Bettys come by. The only thing similar about the two is the name they share. We identify them by their favorite activities - Betty the smoker and Betty the walker. Smoking Betty lives for her next cigarette, and she's still quite articulate. She often mentions how much Billy reminds her of her only son who comes to have coffee with her each morning. She tells me she owned her own beauty shop for years, and I've never seen her without her coat, gloves, hat, and scarf. I asked her if she's cold all the time, and she says it's cold when she goes out for a smoke, and she wants to be ready. Betty the walker rarely speaks or smiles, but I've caught her doing both at least once. She has beautiful porcelain skin, thick silver hair, and the body of a long legged model. She walks when she's not lying in bed. Apparently she was a volunteer at Lexington Place many years ago long before she had Alzheimer's, and she said if she ever had to be in a facility, she wanted to be there. 

One of the more colorful characters in the area is Ginger. Ginger is a tiny little lady who scoots around in her wheel chair and hates getting showers. She communicates her feelings loudly, and she really likes to visit with Andrew and Billy. She often has her baby doll with her, and she shows us how cute her baby is. Sometimes she shouts at the other ladies to get out of the room...just because. There are two nonverbal patients who scream, and Ginger tells them to shut up or stop that! One evening when I was running late, Andrew and Shelley were with Billy in the dining room of the "unit," and one of the tougher residents grabbed Ginger's baby doll. Ginger yelled at her and called her a bitch. The doll snatcher turned and lunged at Ginger calling her everything but Ginger. The nurse separated them and sent Ginger in to sit with Shelley and Andrew while the doll snatcher yelled, "You better watch your back!" Shelley assured me that Ginger had the last word and got her baby back. 

So many personalities and so many different stories. I look forward to getting to know all of them more. They are each more than this disease that robs them of their memories, their histories, and their voices. I want to know each person's story of who they were before this disease struck. I hope I get that opportunity. 

Peace and love to you all. 


  1. I am so thankful the transition is progressing for all of you. It sounds like a place where Billy is really cared for, and I know that takes a huge load off your shoulders. I hate Alzheimer's, too!! So very much. I kept reminding myself that even when Mom's mind was gone, her spirit (who she really was) was still there and was still completely whole. I still believe her spirit knew us even when her mind didn't. Love you, dear Kathy. Love Billy, too!!

  2. Kathy... thank you again for writing. How perfectly you have pictured the devastation of this disease we all hate! So glad that Billy is calmer & accepting of his new environment. Many interesting characters there... hope you get the chance to learn more of "who they were" before AD. Love to you & Billy!

  3. Hi,

    I just stumbled onto your blog. As a 56 year old woman trying to deal with my own husband's AD, I am happy to have found you and look forward to following your journey. Blessings, Swannie

    1. Swannie, it is nice to meet you via blog. This is a journey I don't wish on anyone, but I it's nice to know you're not alone. I like to know other's stories and journeys if you ever want to share. Stay strong and be blessed.