Wednesday, December 18, 2013

The Okay, the Ugly, and the Ironic

"Alzheimer's Disease is a progressive disease that worsens over time." Thus says the Alzheimer's Association's website. Nothing prepares you for the reality of what it looks like over the years. I am often asked how Billy is doing, and I typically say he's okay. Then I qualify my statement by saying that when I say he's okay, I mean he's not worse. I lie...maybe for myself, maybe for the person asking, but I lie. He is anything but okay. 

This past Saturday after a few weeks of bad weather and other Saturday night plans, I looked forward to picking up Billy for the evening. Our Saturday evenings for the past couple of years include worship service at 5:00 followed by dinner out, and then back to the nursing home. They are usually uneventful, and Billy talks little and smiles often. He enjoys being with family. His smile and calmness tell me he's enjoying himself. 

I got to the nursing home about 15 minutes later than usual this time, so I was feeling rushed. Billy doesn't do "rushed." In fact, he slows down the more I try to speed up. He was actually standing up and moving around when I got there. I grabbed his jacket and eventually got that on him, and we began the long walk to the door. Billy's gait is now tiny baby steps as though he is unsure of himself. We got to the secure door out of the unit, and he stopped. He rarely goes out of that door, and I had to coax pull him out. As we approached the exit, Billy saw a chair and started to sit down. Again, I redirected him to come with me. Each of the exits at the nursing home have these large fans that blow mightily overhead when you open the door. After a few years,  I'm still not certain of their purpose (either to keep out bugs or push the door closed), but I do know that they startle Billy when they hit him. The temperature was cool, and with the wind, it was cold. Billy always notices the difference and shutters if it's extreme. 

I started to the car, and Billy's nurse, Sabash, was coming back from his break, so he came over to help me get Billy in the car. Because of Billy opening the car door while I've been driving a few times recently, I put him in the back seat where I can use the child lock. It's always a challenge to get him in the car because he does not remember how. He tends to face the car seat and touch it with his hands, sort of leaning forward. We kept trying to get him to stand with his side to the seat, placing his left leg in the car and sliding in. This is where he gets stuck. He won't budge, and it is nearly impossible to move his leg for him. I decided to go to the other side while Sabash worked with getting him in the car. I reached across the seat and tried to get him into the car. After about 10 minutes of this, I looked up, and Billy had a tear rolling down his face. He was shaking and said, "It's cold." At that point, I could feel my tears welling up, and I wondered about my motive. Was this for me or for him? 

I went back around the car and told Sabash it might be best for me to get him in by myself. Sabash went inside and sent one of the aides out. She started trying to help me, and the whole situation got worse. At one point, I asked him if he wanted to go back inside, and he didn't answer me. He looked distressed, and the aide said she was going in to see if one of the other aides might get a better response from him. When she left, I opened the front door of the car, walked Billy up to the door, and he was able to place his left foot on the floor board and most of him landed on the seat. At that point, I could move him over enough to buckle him in and close the door. I held his right hand while I drove to ensure he didn't open the door.  

Once we got into church and seated, Billy was fine. I was not. I love having Billy with us, and I truly believe he enjoys being with us. However, I know that sometimes I do things more for me than for him. He may enjoy being with us, but it upsets his world to take him away from what he knows. After worship service, Shelley helped get him in the car again, so we could go to dinner. Getting him out of the car is not as big an issue, and everything was smooth sailing at the restaurant. When it was time to leave, Shelley and Andrew helped me get Billy to the car, and once again we encountered an issue. First of all, it was still cold and breezy. In addition to that, the car parked next to us was having trouble starting, and when they tried to start their car, it made a loud noise that confused Billy. He stood like a statue looking straight ahead. He didn't respond when we asked him to get in the car. I was inside the car asking him to get in, and Shelley and Andrew were at the door with him trying to get him in. In retrospect, he probably felt like we were ganging up on him, and he got upset. That made Shelley upset, and we were back to tears over getting Billy in the car. It seems like it would be so simple, and yet, it's one of the toughest things to do. Is it worth it? 

I don't go see Billy on Sundays usually because I need a day away. When I went Monday evening, he was back to his normal for now. Shelley went Tuesday and said he was in a good mood and laughing. This afternoon I attended the annual Christmas party in the memory unit. We take gifts to our loved ones, Santa and Mrs. Claus visit (Billy never acknowledges them), and we visit over some yummy desserts. Today we sat with Billy's new roommate, John, and his wife and son. I enjoy getting to know the families of the residents because I love knowing their stories. After talking for about half an hour, I told John's son that I noticed they had some fiddles (or violins) and other pictures hanging over John's bed and that I assumed he had played that instrument.  Oh, yes, he told me.  He had played in a band called the Light Crust Doughboys, and they had been really good.  I guess he didn't think I would know who the Doughboys were, but those of you who have known Billy Jack Knowles since college, know that I do know who they were. Billy's roommate is John Walden.  He is 85 now and was diagnosed with Alzheimer's Disease at age 65. What a cruel disease. So cruel that neither man can talk about a shared passion, but I am thrilled about this.  Maybe Billy and John will catch up some day in Beulah Land. 


  1. Oh Kathy the great irony of life, they are both roomies and you are right, they can not share their passion for music. But who knows maybe in some way they can and we will never know. Yes as we both know it's a cruel disease. I have no easy answers about continuing to take him out.......I can see all sides to it. But I think the heart would win out and I would feel like I should still be doing "something" with him so he can get out once in a while. But I also know how sometimes you wonder does it really matter? So glad you have Shelley around to help. Always praying for you my friend. Christmas break starts here Friday, I am looking forward to it. Are you done on Friday also?

  2. I sighed as I prepared to think of something encouraging to write... I really couldn't think of anything. I could relate to your opening lines, of saying, "He's ok," meaning that he's not worse. And yet, though I am also a caregiver right now, its a different disease, different prognosis. Ours is more uncertain, perhaps, but Alzheimer's marches on, day by day with nothing to stop the progression. Cancer, while the treatment is absolutely horrendous, CAN be stopped. I ache for you and for Shelley, as you deal with your loss on a daily, excruciating basis, with constant adjustments to his changing situation. I cry inside when I think of your parents' situations and the grief and loss you are all experiencing there, too. I pray earnestly that your support system and friends there are strong, that they help in all the many ways you need- that they come pick up a load of towels and bring them back, washed and folded, that they grab a few groceries for you at the store or call before they go to see what you need... that perhaps someone mows your lawn now and then, as a treat for you all, brings a meal once in a while. Here I go, sighing again... don't lose hope, friend. And as always, thank you so very much for sharing a bit of your journey.

    I spoke with a couple of cancer moms today, just checking in... we were venting about how friends tell us, "Oh, I just don't have time to read those updates..." - the blogs or whatever we write about our cks (cancer kids) to keep folks informed but they want a personal update when we are out for a rare social event, or they say the blog is "too depressing" or whatever. We each admitted we take pains to make the posts encouraging, leaving out the horror of some of the day to day stuff, and I am sure you do, too.

    I love reading your writing, always. And there is always an uplifting or encouraging moment in the post, somewhere. I love how you look for God's hand through this journey. I do too, and I suspect He points those things out to us due to His great love for each of us. And with his great love for Billy, he's given him the most wonderful roommate. And you have a new friend, too. What fun these guys will have when they do meet in Heaven- the music they will make! And you and his wife and many others will join, too. And who knows? In moments of quietness, each roommate may hum a tune or sing a scrap of a song... God is funny that way, isn't He?