Wednesday, May 23, 2012

Hard to See

I typically don't post twice in one week. Part of that is because I don't always have the energy, and sometimes it's because things don't change that quickly. Then sometimes, I get hit in the face by the changes that have been subtle on a daily basis, and my heart wrenches. Today was one of those days. 

I had a Care Meeting for Billy today. The social worker, director of nursing, and activity director all met with me. They wanted Billy to join us, and I agreed. The activity director, also named Kathy, went to get him. As she brought him around the corner, I saw him being led by her. He walks so slowly now - like a very old man, and you have to pull him along. His gait seems normal and balance is okay. I have no idea why that has changed. Just part of this lovely disease. It's also hard to get him to sit down. It's a disconnect between his brain and legs, I think. He does finally sit down, but it's a big change from what it was. 

The nurse explained to him that we were meeting to make sure he was comfortable and that all things were going well for him. He responded, but it didn't make a lot of sense. When prompted, he says he likes it there. He eats well, and yet he's lost almost 20 pounds since January 24th. We certainly are not concerned about him being too thin because he had some weight to spare, but I do hope his weight loss slows. 

The hardest part for me to see is his inability to respond to questions well. The nurse asked him what he taught when he was a teacher, and he looked around for a moment, then he pointed at the table and said something about a green square. I said, "You taught history, and you really liked teaching US history the most." He nodded. And you know what he said...."I still do." A few minutes later, the social worker asked him his birthday. He looked at me, and I waited to see what he would say. He finally said, "Twelve, twelve, twelve." I told him that his birthday is on the twelfth, and I asked him if he knew the month. He thought for a moment and said Julie. I corrected him and confirmed that it is in July. He realized he had said it wrong, and he tried again, but he couldn't get the word July out. 

The hardest part of the meeting was signing a DNR for him. I've tried to talk to Billy about this for a few years, and when I knew he could understand, he would say he wanted to think about it. Obviously, he cannot make those decisions for himself now. I feel strongly that if God decides to take him home, I will not stand in the way. I'm in no hurry, and the thought of Billy not being here is too hard to imagine. But in so many ways, he's not here now. His eyes have that far away look, and he knows to respond to questions, but many times he doesn't fully comprehend what he's being asked.

He does make us laugh still - intentionally sometimes. But it's often because he just says what pops in his head. Last week, we were at my sister-in-law's (Jerris') house for a graduation reception to honor my nephew, Cory. He just completed his bachelor's degree and plans to be a band director. Cory has been in DCI for several years in the summer, and we often watch dvds of his performances. Billy had just finished eating, and Jerris asked him if he would like to move to the living room and watch a dvd of Cory marching. Without a moment's hesitation, Billy said, "Not really, but I will." Jerris looked so surprised, and I just had to laugh. I looked at her and said, "no filter." We just had to laugh. 

Saturday, May 19, 2012

Still a Teacher

Anyone in education knows that this time of year is busy, stressful, and exhausting. That would describe my last few weeks, although this past week offered enough time for me to see Billy each day. The week before was packed, and I didn't see him from Monday until Friday - a long time for him and for me. 

This week was a good one for Billy also. He interacted with us each day, and he was usually happy. According to the nurses, he's had more anxiety than usual this past week and required more medication for it. By the time I saw him in the evenings, he was usually calm except for one night. He was worried or concerned, but he could never articulate what it was. When I spoke with the evening nurse, he said that one of the other residents had followed him around all afternoon, and that seemed to agitate him. It's so hard to communicate with him now, and that's frustrating. Our conversations are superficial at best, but it's always important to him that I know how much he cares for me. 

In the last few months, several people at the nursing home have asked what career Billy had. He's always been there when they asked, and I would say, he was a teacher. Each time, Billy corrected me and said, "I still am." The same thing happened tonight as we had dinner with some long time friends. Billy has known them since he was a child, and we all ran around together as young married couples. We moved away from the area when our kids were very young, and after twenty years in another part of the state, we returned to this area. When we left the area, Billy was in management with a retail nursery that transferred him, and when we returned he had been teaching school for some time, and they asked him how long he had taught school. He was very quick to say, "I'm still teaching." I remember the time when Billy knew he had Alzheimer's, and it was so hard for him. He was angry and frustrated, and he really didn't believe he needed to quit teaching. We've reached a point where he doesn't know, and I think it's easier for him. 

Billy's been living in the nursing home for almost four months, and in that time, his cognitive level has declined so much, but he's strangely happier. Several factors play into that I believe. His life is much more routine. He has a set schedule every day, and he doesn't have to be concerned about how he will get somewhere. No more riding the bus or being concerned about getting picked up. He also has constant medical supervision, and that has helped get his medications where they work more to his benefit. When he came to live here in January, he still had some grasp on reality, and as the disease progresses, he is less aware of reality. While that saddens me, it also relieves some of his anxiety. 

I've not mentioned the financial side of this disease in a while. Billy was accepted into the nursing home on Medicaid Pending status which meant that the financial director of the home felt confident that Billy would definitely qualify for Medicaid benefits, and that when we could apply and he was accepted, the nursing home would be compensated for the time he's been there. The only part I would have to pay would be his applied income which is basically most of his annuity he receives from Teacher Retirement System of Texas. It's not much, but it has certainly helped make ends meet since the time he had to quit working. It helped with his daycare costs, but it didn't come close to covering it all. I turned in my portion of the Medicaid application along with required documentation in March. The nursing home financial director actually submitted the forms (as is the practice), and he submitted the information they are required to turn in. I received a call about six weeks later from the person who was processing the application. She told me that this was the only application she remembered processing that had all the documentation needed from the family - in our case it was 100 pages. However, the nursing home had not given them a form to document that Billy's entrance into the nursing home was a medical necessity. She had tried to reach the financial director to have that submitted and had been unable to do so. She was calling me to ask why Billy is not on Medicare. I got to tell the long story of why Billy's not on Medicare (or social security disability) AGAIN! Of course the VAST majority of residents in a nursing home - no matter the age - are on Medicare, and if you are on Medicare, the transition to Medicaid is basically showing you have financial need. Because Billy is under age 65 and does not receive Medicare, he must have this letter showing Medical Necessity. She told me that it appears that Billy does meet the financial qualifications for Medicaid benefits, but without the very important missing document, it would be denied. About a week later, I received a letter denying Billy Medicaid benefits. I can apply again, and if all the paperwork is correct, he should qualify. I have to fill out the application again (about 10 pages), but I do not have to submit the documentation again. I remain hopeful. Frustrated and weary - but hopeful. 

Friday, May 4, 2012


What a week! One sign of a tough week is when you wake up on Wednesday thinking it should surely be Friday. The roller coaster with Billy started last Friday. I got to the nursing home too late to take him to the main dining room, so after he finished dinner, we sat in the little TV room for a while. He was unusually quiet and distant. He answered questions when I asked, but the answers made little sense. He batted at something in front of him, and I thought it must have been a gnat. I asked him what he was hitting at, and he said, "a magnet." I didn't respond to his comment but continued to sit with him and watch Everybody Loves Raymond. He doesn't laugh at all the right times anymore because he doesn't really engage in television, and if he does hear something funny, it doesn't seem to register for him. He swatted again, and I knew I hadn't seen anything. "Another magnet?" I asked. He shook his head and said, "cigar." This is new territory for me. I ignored the next swat. 

One of the sweet little residents who talks non-stop in the same tone, smiles, and claps her hands, joined us like she does each evening. Billy usually just smiles and responds to her with a nod. That evening, he seemed annoyed with her, and he responded with something that made no sense, and he didn't smile at her. I left soon after because I really couldn't take it anymore. 

I'm sure part of my sadness was from losing our friend, Shelley Reep, a few days earlier and putting my initial grief on hold. I'm pretty good at compartmentalizing my feelings. When I'm at school, we have enough going on that I can easily become engrossed in all that it entails, especially this time of year. Deadlines for so many reports and evaluations, homework for principals' meetings (boo!), closing out this year and planning for next year. The list goes on and on. After I get away and start thinking about life outside of school, it hits me that I have some things to deal with. 

The next day, I was concerned about taking Billy to church because the previous week, he would just talk out, and Shelley and I would remind him to be quiet. This Saturday, though, he was fine. No talking out.  After church, we went to my sister's to have supper all together - something we've not done in a long time. Billy was in rare form - silly is the best description I can think of for his behaviors. He made faces, he commented about most everything anyone said, and his comments were so completely off base, that we would laugh. More than once, I wanted to cry because it was so random, but like I said, I can compartmentalize for a while. The dam breaks later, though, and I feel that pain you feel when you know someone or something you have cherished is no more. 

Something I've come to know in the last few years is that we get little previews of what is to come. I'll see a new behavior and think that maybe I didn't see it correctly. Maybe I'm reading too much into it.  Then we'll have a few days where we don't see that behavior, but it usually comes back. Billy was in pretty good spirits Saturday through Monday. I had a meeting on Tuesday evening and couldn't get over to see him, so Shelley spent dinner with him. Later in the evening, she was really down about his his demeanor...she felt he was somewhat unresponsive and distant. 

I know exactly what she's describing. Gary Reiswig wrote The Thousand Mile Stare, a book about his family where Familial Early Onset Alzheimer's Disease is prevalent. He describes how the family members get a look in their eyes as though they are a thousand miles away. I see it in those residents who are further along in their disease than Billy. They look in your direction, and they look right through you. Billy's eyes have been different for a few years now. His vision is fine, I'm sure, but when you see his eyes, they have a different gaze about them. We've had a preview of that distance a few times now. When we went on Wednesday, he was back to his happy silly self with dancing silverware, and he's been that way the rest of the week. But we've had our preview, and we know what is coming. 

On a lighter side, the unit has three new residents - all women and all interesting and challenging in their own ways. God bless the sweet people who work with them for hours each day. I was reminded of how Billy has changed in the three months he's been there. He's so much calmer than he was, and he is so much less aware than he was. The disease marches on, and we cannot stop it. He still knows his family and close friends, and even though so much of what he says is nonsense, he says, "I love you," often and sincerely. Thank you, Lord, for that blessing.