Friday, April 29, 2011
Thursday was the day we had Catherine, our caretaker from Easter Seals come to the house. I had asked her to stay late because I needed to attend the beginning of our school board meeting, so it was a long day for the two of them. When I returned home around 8:00, Billy greeted me in the driveway. I asked him how his day was, and he said it had not been good. He indicated he would have to tell me about it later. When I walked into the house, I asked Catherine how the day had gone, and I could tell from her look that it had not gone well. I asked Billy to get my briefcase from the car, so I could have an opportunity to visit with Catherine. She told me that for three hours, Billy had been agitated and confused, wanting to go home. He told her again and again that he wanted to go visit his mom, and she told him they couldn't leave because I would be so upset if they weren't home when I returned. Catherine is really good about working with dementia patients and has a natural ability to calm them. She can take Billy places and run errands for hours - something I can't do successfully. I could tell by her talking that those three hours had been tough. Those are typical sundowning episodes for Billy. Sometimes they last 2 hours, and sometimes they are much longer. Fortunately, he came out of it the last hour I was gone. But I know Catherine was worn out.
He returned to the Cottage on Friday, and I was able to pick him up early. He had a great day from the conversation I had with the caretakers. The owner of the facility had been there all day and enlisted Billy's help on moving items from one room to another. He felt purpose, and that always makes a difference for him. A good day on Friday leads us into a good weekend, and I am thankful. I'm praying for many more.
Sunday, April 24, 2011
Today was a rather relaxing day for us. We worshipped at the Saturday night service last night, so we spent most of this morning unpacking boxes - actually I unpacked boxes, and Billy took boxes and paper to the garage. By afternoon, we were tired, and while Billy watched SportsCenter, I decided to take a nap. Our bedroom is just off the family room, so I could leave the door open while Billy watched TV, and I napped. When I'm out of sight, he often forgets where I am. This way I could hear him if he called me. I think I slept about 1/2 an hour before he came looking for me. I could hear him going down the hall, then coming back toward our room. He came in and woke me up while he was talking to me and asking what day it was. I opened my eyes and talked for a minute or two, and then he said, "I wanted you to meet my girlfriend." My immediate response was, "Oh, honey, you don't have a girlfriend." He looked at me with his you don't know what you're talking about look and said, "Yes, I do have a girlfriend. She was here for a long time while you were sleeping."
If I've learned nothing, I've learned to expect the unexpected, but this one really took me by surprise. I asked him to tell me her name, and he thought for minute, then said, "I forget those things. But I really love you." I have to admit that a part of me wanted to insist he produce her because she needed to take her turn in his caretaking! I could use a break, and maybe this girlfriend is the one to give it to me. All kidding aside, I have to say I did not see this one coming. When he told me about it, it was without shame, and he had no intent to hurt me and no realization that him having a girlfriend would be inappropriate or hurtful to me. My instant response was to laugh, and I resisted that because it would have hurt Billy. It's hard to explain, but when I question him about something he's said, he gets a bit defiant. One day he kept mentioning that he wanted to go visit his mom, and he thought we should call her. I sat down beside him, and said, "Honey, I know you don't remember this, but your mom passed away about two and a half years ago." He looked me straight in the eyes and said, "I know you think I'm hallucinating, but I saw her this morning, and she's fine." I find it's best just to go along with his delusions and try to redirect him.
I know that Billy doesn't have a girlfriend, and I do not question his love or fidelity. But I also know I may have to face similar situations in the future. A few years ago, I was watching the HBO documentary series on Alzheimer's Disease that was produced by Maria Shriver. It showed a man and woman in a nursing home who seemed very much in love, and introduced each other as husband and wife. They had separate rooms, and when it was bedtime, the woman went to his room and lay down with him (fully clothed) and embraced him. She told the person filming that they were so lucky to have each other. In the next part of the film, you see the woman who is actually his wife and their daughter. They are heading to the nursing home to pick him up and take him to a church function. When they arrive, they see their husband and father sitting in the living area with the woman that the viewers thought was his wife. His actual wife greets her, and they go on as "normal." He gets up and leaves with his wife and daughter. I remember thinking that I didn't know if I could handle that. Is this phantom "girlfriend" preparing me for something more concrete? I don't know, but I do know that I have to always remember that this person with Alzheimer's is not the same as the person I married and have loved for more than three decades. My love for him is not diminished in any way, but my relationship with him is changing, and my role is morphing from spouse to caretaker. I pray for peace in my role, and I pray that I will have clarity as I make decisions on the best path to take for Billy.
Monday, April 18, 2011
I've mentioned in previous posts that Billy doesn't always remain asleep, but over the last few months, these episodes of sundowning have become more frequent and extreme. This past Saturday night was a particularly long night as he kept me awake most of it. He becomes agitated and unreasonable when he's in the midst of it, and he doesn't understand why I won't get up and "get ready" for whatever it is we are about to do. When we went to bed Saturday night, he went to sleep very easily, and I've not been giving him the Ambien unless he wakes up and seems to need it to get back to sleep. On this particular night, he woke up around 11:45 and got out of bed. He took a shower, and got fully dressed, then woke me up and told me it was time to get ready. I told him over and over it was bed time, and he argued that it was not. He repeatedly said that he just didn't understand. I'm not sure what he didn't understand, but he was frustrated with me for not getting up and getting dressed. I would plead with him to let me sleep until 6:00, and he would walk away a bit. I would doze off, and then I would be aware that he was standing over me, or I would hear him pacing the floor. He was trying to make the bed, and he told me I was in his way. It seems funny now, but in the middle of it, it's very frustrating. I knew we needed to get up early because we were traveling to Nacodoches the next day. I gave him a dose of medicine to help him sleep, but he wouldn't lay down. He complained of being cold, and I told him he would warm up if he got into bed. He did get into bed for about five minutes, and then he was back to the pacing...asking questions....telling me to get up. He had a sense that we were going somewhere, but he couldn't articulate where that might be. I think he finally settled down for about an hour, and then the alarm sounded. He was awake immediately. Nothing prepares you for this behavior, and I read differing philosophies on how to handle it.
I was certain he would be exhausted the next day and would surely sleep in the car. He did not. He was too busy worrying about each person who drove, where we were going, and if we were going the correct way. When we finally got to Nacodoches (to attend my nephew's senior recital), he didn't really understand why we were there, and he wanted to know if we were going back the same way we came. He kept asking if we were missing someone. We were traveling with my parents and sister - all in one car. It was quite an adventure with Billy - one I'm sure they will not forget. After such a busy day, no sleep the night before, and his high anxiety, Billy slept like a baby that night. When he sleeps, so do I, and it was blissful.
I'm amazed at the changes that I see in Billy almost daily. His speech is being affected more than it ever has. He loses words or combines them to make new words. He says things that make no sense to me, and I try not to respond. I give him a task, and he cannot complete it. This morning, he got dressed and asked me how he looked. I told him he had worn that shirt on Thursday, and he needed to put it in the dirty clothes hamper. I also told him to find a short sleeved shirt because it was to be 90 degrees for the day. He went into the closet for a moment and came back to ask me what I thought about his clothes now. I told him it looked exactly like the same because he had not changed. I realized that I gave him multiple steps to follow, and he cannot do that. I backed up and told him to take off the shirt and put it in the hamper. He did take off the shirt, but I found it hanging in the closet later. All the years I tried to get him to hang up his clothes, and now I can't get him to stop hanging up his clothes. One task I need to complete this week is to move all his long sleeved shirts to another closet. He is drawn to them, and it's too hot for them.
We are now in our own home, and it feels great. I have no idea when I will ever get completely unpacked, but even with boxes everywhere, it's great to be "home." I miss my niece and nephew terribly, and they miss us, too, but they are just five minutes away. I hear steady sleep breathing, and I'm taking my opportunity to join in on that! Pray for fewer episodes of sundowning.
Wednesday, April 6, 2011
Friday, April 1, 2011
- Do I give Billy meds for issues that bother him or me? The medicine for sleeping is probably more for me...I don't know that his lack of sleep bothers him, but I need rest to function throughout the day.
- Will I be able to keep Billy at home for the duration of his disease? Honestly, I don't know that I can. I love working, and my job is part of my refuge. I feel much too young to retire, and I can't retire without full benefits for quite some time. Even if I have someone take care of him during the day, will I be able to care for his needs on my own in the evening? Change him, feed him, turn him, bathe him? It's overwhelming and scary at times, but God will not let go of me.
- When eating becomes impossible, will I approve a feeding tube? NO! I've always had strong feelings about this, and the doctor who spoke on it yesterday affirmed my belief that a feeding tube is artificial feeding, and it can often do more harm than good.
- What does a DNR entail? I also came to a clearer understanding of that. It doesn't mean that we don't treat an infection. We just choose not to be resuscitated when our heart or lungs fail.
- Will the day come when Billy doesn't know me? Maybe not. He may not know what my role is, but I believe he will always know how much I love him.
One session was a panel of spouses who dealt with their loved one's disease. They laughed, and they cried. They told funny stories of things their loved ones had done, and they told the heartrending decisions they had to make. One panelist was definitely younger than the others, and she shared that her husband was diagnosed at age 54 and died at 58. His was a rapid decline, and I don't believe Billy's is progressing that quickly, but when he has a dip, it's a big dip. Currently, he is struggling with speech and finding the right words. Sometimes, he says entire sentences that really don't make sense, and sometimes it's just a few words. He rocks along at the same point for a long time, and then something occurs, and he plummets.
I am so thankful that we live in this area. Our resources are much greater than they would be in a smaller town. Shelley and I will be putting together a team for the Memory Walk that will take place on October 15, and I hope that those of you in the surrounding area, can join us. Watch for more details