Sunday, February 16, 2014

What Keeps Us Going....and what gets us down

The  most asked question I receive is always appreciated and really difficult to answer. I'm happy that people ask about the most important person in my life, but I don't always know what to say.  The truth is that he is about the same he has been for the past few months, but in comparison to the last year, he's declined considerably. When I think about the last two years, he's gone down drastically. At times, his condition can really get me down. 

I've mentioned before how difficult it is to get Billy in the car, and about three weeks ago, he got so frustrated that I decided to stop taking him away from the nursing home for a while. I will reassess when we return to Daylight Savings Time and the weather is warmer. Those two things may not help, but he gets more confused when it's dark, and the cold hasn't helped any of us. I'm aware that I probably get more from taking him with me than he does, but I know he enjoys being with family and seeing friends. Unfortunately, if I don't take him out, he won't see most of those folks. Going to the nursing home is difficult for people, and I was one of those people for a long time. I do not criticize anyone for not going because it's not overly pleasant, and Billy communicates very little. He does love seeing family and friends, though, and we can tell that by his smile and expressions. Sometimes he will say something that we don't recognize, but he tries to communicate. 

Yesterday, he had a fall. He's fallen a few times before when he was trying to sit down and missed the chair, but this time was different. He was walking down the hall, and leaned over to pick up a "Wet Floor" sign.  He lost his balance and hit the back of his head on the hand rail that runs down the hall. As he tried to get up he fell again, and hit his head on the floor. He has no fractures, and I assumed he would not. Billy has youth on his side where falls are concerned, but the fact that he lost his footing while doing something very simple signals another decline. He may not fall again for months, or he may begin falling often. Alzheimer's progression is not always predictable, but what I notice among the residents is that when falls become the norm, the resident ends up in a wheel chair. I am not ready for him to move to a more restricted mobility. Of course, I'm sure that my lack of readiness will keep it at bay!  

Billy can do very little for himself at this point, and walking, albeit very slow, is one of his few independent activities. He needs help getting up, sitting down, eating, drinking, dressing, bathing, and toileting.  The medical world calls these daily living activities.  He is slim on independence with those activities. 

So those things really get me down, but we have some wonderful glimpses of the old Billy that get us through and keep us going. One of the last times I took Billy to church with me, he was sitting between Shelley and me. He tires pretty easily, and we stand for quite a while at the beginning of our worship service. Shelley sat down with him, and when I glanced back at them, he was leaning toward Shelley like he wanted to tell her something.  As she leaned toward him, he kissed her on her cheek. He will always love his girl, and such a small sweet gesture brought tears to her eyes. A week or so later, Shelley was helping get him in the car (the big challenge), and after she buckled him in, she kissed him and told him she loved him. He responded loud and clear with, "I love you." He doesn't say much at all anymore, and that was huge. 

When I go see him in the evenings, and he realizes I am there, he gives me a huge smile. Once in a while, he even says some little something, and I'm thrilled. Sometimes I get there early enough that he is still in bed. I don't know if I will ever get accustomed to him being in bed so much of the afternoon, but when I go in his room, he is often already awake, but they have not gotten him up. I sit down beside him, and he grabs my hand.  

The small things get us through. The smiles, the incoherent mutterings, the gentle kisses, and the touch. I will never take those for granted. 

So, how do I answer the is Billy? The best I can tell is that Billy is happy. Not knowing how far his disease has progressed is a good thing for Billy. When he knew where he was headed, he was frustrated and angry. He gets frustrated at times now, but typically, he's happy. His smile gets me through, and I often tell people he's okay...not good, but he's okay. I think that most people get it.