Happy to see Friday...

What a difference a week makes. Last Friday, I wrote about our visit to Billy's doctor and new meds. Last weekend was when Billy told me about his "girlfriend," and he had several episodes of delusions. He's been on new meds for a week now, and overall, I believe his anxiety is slightly better. Several weeks ago, the doctor had given me a prescription for the higher dose of Ambien that is also a time release pill. We wanted to see if changing a few other things would help with his sleep before getting it filled. After too many nights of him waking at 2:30 or 3:00 and not relenting, I had the prescription filled. He has slept all night for three nights, and I'm praying he will again tonight. I had to wake him Friday morning, and I do not remember the last time that happened.


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.

Didn't See That Coming!

It's been an incredibly busy week for us with the unpacking that needs to be done, the errands needing to be run, my schedule, and life in general. One important event was Billy's appointment on Friday morning with the doctor where we had a long discussion about his anxiety and agitation. Billy's appointment was at 8:45, and he had been awake and up since 3:00a.m. I gave in at 4:00 because the bed needed to be made, and I was preventing that. I really needed to get up a bit early because I had to be at the hospital for a small procedure at 6:00, and I was taking Billy with me because of his appointment. I was nervous about leaving him alone in the waiting room while I went into the treatment area, but God sent a talkative couple who had him engaged in conversation. I felt okay about leaving him there, and I was only away for 10 minutes. He was pretty calm when we arrived at the his appointment, but the doctor mentioned how anxious he seemed right then as he was fidgeting. I guess I don't realize as much because if he is awake, he if fidgeting. A new medicine was added, and she is weaning him off another med that is a stimulant. So now we wait for the new regimen to take effect.

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.

Sundowning

Throughout our marriage, Billy has experienced bouts of insomnia. He rarely suffered alone because he was fidgety or he turned on the television or lamp to read. I was usually aware of his inability to get to sleep, but he would apologize for waking me, and I would turn over and get back to my sleep. Sundowning is nothing like insomnia for Billy.



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.

Natural Sleep

April arrived with a bang - literally - when we had stormy weather earlier this week. That may have been what awakened Billy at 1:50 Monday night/Tuesday morning when he would not go back to sleep. I've mentioned before that his sleep issues have become my sleep issues also. If he's awake, he's asking me questions and telling me it's time to get going. When he wakes up in the night like this, there is no reasoning with him. I tell him over and over that we don't leave the house until 6:00, and we don't have to get up until 4:45 or 5:00. It does not compute. This week I told him to look at the clock which said 2:03, and I told him we leave the house at 6:00, so we didn't need four hours to get ready. He cannot comprehend what I'm saying, so he stays awake and reminds me often to get up and get going. Later that morning, I was complaining about fatigue to my secretary, and she recommended that I let Billy go to sleep without the meds, and when he wakes up give him half a pill. That should help him get back to sleep and stay that way. I'll try almost anything to get some sleep, so I did not give Billy a sleeping pill before he went to bed on Monday night. He fell asleep easily like he always does. He woke up about 2:00 and got up to go to the restroom. When he came back to the room, he crawled back into bed, and I was waiting for him to tell me it was time to get up. It didn't happen. Instead, he went back to sleep, and we both slept until the alarm sounded. It was wonderful! It reminded me of the first time our newborn slept all night. I wanted to check for breathing! I repeated that last night, and he made it til about 4:15 this morning, and I count that as great! Thank you, Lord, and please bring the sleep fairy tonight also. The sleep is great, and it's nice to give him one less pill. One activity Billy enjoys and asks about often is going to church. For most of our married lives, we have attended mid-week service. He rarely remembers what day it is when I pick him up, and he usually wants to know what time church starts, and, tonight I was able to take him to church. During the sermon, even though the scriptures are projected on the screen, our minister usually tells us to turn to them in our Bibles. Growing up attending church often, I learned the books of the new testament early on. I tried to learn the old, but I never had them down as well. Not a problem since Billy could always turn to the old or new testament scriptures without a problem. Tonight he couldn't find Acts. He was close...in John...and he looked at me for help. I turned a few pages for him, and he recognized Acts, but he never made it to chapter 15. I didn't cry openly, but my heart did. We had a similar experience on Sunday night when we were signing a lease that required initials on each page. That was very difficult for him, and at one point, he stopped and tried to find the words to say he needed to practice his J - he just stopped in the middle of writing them. He finally got started again and got the initials done, and he did sign the end almost legibly. He's struggling more and more with his words these days, and when his anxiety is higher, he really has a tough time. I have a durable POA and a health POA drawn up - we just need to have them notarized, and I have really drug my feet on them. I don't want to take away another thing from him. But it's painful to watch him struggle to initial a page, and I have to point to the place where the initials go, even though mine are written beside the place for his. We are still blessed that Billy recognizes all of us, and he nearly always knows people from his past. At church tonight, we saw one of our friends from when we were young marrieds - Shelley's first babysitter, in fact. He forgot her name, but he knew who she was. Sometimes it's like a lightswitch comes on, and he has clarity that we've not seen for months. I'll take it anytime I can get it.

Alzheimer's Symposium

I took off from work yesterday to attend the annual Alzheimer's Symposium that the Alz. Assoc. holds each year in Fort Worth. They bring in experts in research and treatment, and I learn so much about this disease. I also realize how much they (we) still do not know about it - like why it strikes certain people. There is the genetic side, of course, and many of those hit family members at a young age. The head of Alz. research with the NIH commented that when symptoms begin, the underlying pathology of the disease has been present for about a decade. I saw major memory issues with Billy around 2000-2001, but in retrospect, he was always forgetful. He coped with it by making notes, writing on his palm, or putting a mark just beside his watch. He told me he did that because he looks at his watch so often, he knew he wouldn't miss it. On the flip side of the memory issues, he had an incredible way of remembering historical facts and figures. He loved history - Texas, US, World, etc. He loved to read about history and read voraciously. He never picks up a book anymore, and that makes me sad. I know he can still read because he reads to Connor and Claire sometimes, but his fluency is halted, and I think it's just too hard to comprehend sometimes. When something becomes difficult, we sure don't want to do that for recreation. So many points to ponder from yesterday...

• 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