Sunday, May 29, 2011

Clarity has left the building...

We've had a good weekend. Billy has been much more upbeat, and he's not mentioned his disease or "diagnosis" at all. The clarity I saw last Sunday was not present today, and in fact, it has not been present all weekend.

Because of Billy's anxiety and perseverance regarding time, I don't tell him about upcoming events too far in advance. I thought he would enjoy a performance at the Texas Opry in Weatherford Saturday evening, and because it didn't start until 7:30, I felt we could go to church at 5:00, leave a little early and still get there in time. I did tell him about going to Weatherford before church, and all was well until we left church. I knew the straightest route would be clogged with traffic, so I went a different way than he was familiar with. That really gets him going when he doesn't know where we are going, and he doesn't recognize how I'm getting there. His questions and comments will not stop. Mostly, he feels that we are lost, and we will never arrive at our destination. This must be how he feels often....just sort of lost. I cannot imagine how it is to feel so out of control. We did make it in time for the performance, and he really enjoyed it until his worries began. Through a tiny crack in a curtain that was haphazardly hung, he noticed that the sky was darkening. This started his constant watch-watching, and he pointed out to me that it was 8:50. Then it was 8:52, 8:53, and you get the picture. At 9:00, I told him we were waiting until the performance was finished to leave. In these situations I use my "mom" tone, and he gets it.

His concern was based on us not being able to find our way home. Unfortunately, I did take a wrong turn along the way, and I had to stop and reset my gps. This only added to his anxiety, and that, added to my realization that he didn't have his 8:00 meds, gave me a certain urgency to GET HOME. We made it without any issue when I got on track, but he worried and worried.

Sunday was pretty smooth sailing, and we are currently experiencing Monday, the holiday. Billy is off schedule because we don't normally stay home on Monday. He took his shower at 4:00 this morning, and I did get him to come back to bed, but he struggled to understand that we didn't need to get up and get ready. His current focus is on getting our two trash cans back into the garage. The city provides us with two large bins - a black one for trash, and a blue one for recycle. Billy is quick to take the trash out for me, but he really gets confused on which can is which. I try to check the recycle can before trash day, so I can take out the items that shouldn't be there. We set out the cans on Sunday evening because pickup is Monday. He finally seems to have that down correctly. They have to be placed in a certain way and in a certain place because a mechanical arm picks up each can and dumps it into the trash truck. On Monday, three different trucks come by - trash truck, lawn clippings truck, and recycle truck.

Billy heard the trash truck before we ever got out of bed, so as soon as were up and dressed, he dashed outside to put the can back in the garage. He came back in to say, "They didn't dump the trash in the blue one." I explained again that the blue was recycle, and he should take it back out to the curb because that truck would come around soon. Oh. Back out he went and took the can back to the curb. Relaxing is not part of what Billy does, so he busied himself with sweeping the floor. He heard another truck coming, and he just couldn't wait to get out there and bring the can back into the garage. I was busy with something else, so I didn't follow him. In a few minutes he came back in to say that the trash guys had missed us again, and they didn't pick up the recycling. He had put that darn trash can back in the garage. I had seen the truck picking up across the street and knew they would swing back by our side, but Billy didn't understand that. I explained again that he needed to leave the blue can out by the curb until it got emptied, so back he went. He didn't come back for a few minutes, so I went out to check, and there he was down the street where he had stopped the truck (the grass clippings truck), and he was talking to the man in charge along with a neighbor, and they were trying to explain it all to him. I went on out, and the employee of the city came to me to explain. He was very kind, and I really appreciated his patience with Billy. The neighbor just stood there looking puzzled.

Our son in law arrived a bit later to mow our yard, and Billy is now following him around. I guess I should go rescue my son-in-law as I'm sure he's getting more help than he needs.

The good news is that we will go to my sister's for lunch with family today. He settles down pretty well over there, and he hangs out with my brother in law as much as possible. Billy is really looking forward to it.

So glad we have a holiday to rest and catch our breath! HA!

Thursday, May 26, 2011

A Moment of Clarity

I started this post several days ago, and I've added to it three times. The only time I have to write is after life settles down - usually after 9:00. I've fallen asleep each time I've tried to write this week. Now that Friday night has finally arrived, I have my second wind, and I'm determined to complete this post.

Last Sunday morning we were on our way to church when Billy made a statement out of the blue..."You know how we were talking about you putting me in a nursing home?" The impetus for this statement came from a conversation we had the Friday before. I actually had driven by an assisted living place that has a day stay program. I have no intention of putting Billy in a nursing home right now. It's not an appropriate place for him because he is not at that level of decline. But when I drove him by Autumn Leaves to see it, it had the LOOK of a nursing home, and he jumped on it. The Rose Cottage looks nothing like a nursing home, and that's a big plus for Billy's acceptance. As we talked more about Billy's statement, I was amazed at his clarity and ability to articulate his feelings. The light switch was on, and it's been dimming for quite some time.

I have to admit it freaked me out a little. It was much like talking to the "old" Billy. For several years, I've attempted to get Billy to talk about his disease. He would not. He would say things like, "There's not much to say." I wanted him to tell me how he felt, what he wanted me to do in the future when he couldn't make decisions, etc. No way. He clammed up every time. On Sunday, he couldn't say enough about it. He told me he doesn't want to go to a nursing home, and as much as I tried to reassure him, it didn't ease his mind. I also will not tell him that I will NEVER place him in a facility; I don't want to make promises I can't keep. and I don't know if I can take care of his every need every day. He said he thought he should see a doctor about his disease. I reminded him that he sees a doctor every three months or more. Could he go to a hospital and get better, he asked. Sadly, no. I told him that I've taken him to three doctors - a neurologist, a psychiatrist, and a geriatric specialist. They have all found the same thing....he has Early Onset Alzheimer's.

He's said more about Alzheimer's Disease in these last week than he's said at all in the last four years. He's asked repeatedly how long he has to live. We do not know, and I remind him often that his mom lived a really long time. Nothing I say seems to ease his mind, and he tells me he's scared....of dying, of not dying, of being helpless. Even though his cognitive ability has declined significantly, he does know that Alzheimer's Disease is fatal. Unless you die from a secondary disease or issue, Alzheimer's ultimately takes your life, and you dignity, and when you're young, it takes your livelihood, your ability to read, to converse, to walk, to eat. I hope he doesn't have the ability to remember all of what his mom went through.

During his moment of clarity, he remembered and he understood. As the week went on, he continued to worry and talk about his "diagnosis," but the clarity is gone. Each morning this week, he's asked where our mother is, or where my mom and his mom are. I tell him they are already gone, and that seems to satisfy him, as though they've gone to work.

He was very down and depressed on Wednesday at the Cottage. The nurse noticed, and she talked with him about it. He told her he had received a really bad diagnosis, and he didn't have long to live. He mentioned his mom to her , and she reminded him that his mom had passed away a few years ago. That made him very angry because his mom had taken him to the cottage that morning. Another nurse redirected him and got him and everyone else involved in playing ring toss, and he was much better.

I have determined that if and when he has another moment of clarity, I'll ask him as many questions as I can. His phantom girlfriend talk has taken a backseat to the other issues on his mind this week, and I don't mind that. But I do mind that he is sad. When his mom was alive, she reached a point where I felt that she was neither happy nor sad, and no emotion seemed better than anger and fear and unhappiness. If I look for the positive in this, and it takes some real searching, I can say that as his speech begins to fail, I listen to him more carefully. He seems compelled to tell his family how much he loves them, and there is nothing bad about that. He showers me with compliments, and I believe he truly feels that I am the most beautiful woman in the room. Shelley picked him up on Thursday, and he told her what a great daughter she is. She needed to hear that, and I'm thankful he found those words.

Sunday, May 15, 2011

I long for boredom...

The past week has been full of ups, downs, highs, lows, and leaves me wondering if life will ever be predictable again. Most likely the answer is NO.

Early last week, I received a phone call from the Rose Cottage telling me that someone very special had taken care of Billy's daycare bill for over a month. In the midst of the really awful things we've had to deal with the last several years, we have witnessed blessing after blessing come our way. I thank God and give Him the glory for all of this, and I hope when I tell these wonderful friends how much I appreciate it, they know I'm sincere. Words seem so inadequate to express my gratitude.

Later in the week, I received another phone call from the Rose Cottage from Terry, the main caretaker, around 8:00 a.m. It had been less than 2 hours since I had seen her when we met for Billy to ride with her to the Cottage. I get a bit worried when I get calls from the Cottage because they don't call very often. Terry called to tell me that Billy had asked to talk to her about something that morning. She said while he was talking to her, he was visibly sweating and trembling. He told Terry that I just wasn't the same woman I was when we maried, and that he just didn't know what to do. He told her we had talked for a long time the night before, and it looked like I was going to leave him. I was really stunned on the other end...Billy had fallen asleep around 8:30 the night before in his chair. We never had a talk like that, but in Billy's brain, it happened. Terry tried to assure him that I was probably just stressed from the end of the school year. I assured her I would never leave Billy...which she already knew. She told me she would work on calming him down about it.

The weekend was busy, and Billy did pretty well through most of it. We were arriving home on Saturday evening when we noticed several cars parking along the street near our home. Billy is Mr. Curious and always has been. When we were getting out of the car, he was craning his neck to see what was going on. The folks two doors down are from India, and their guests were all arriving in their native dress - men in white trousers and tunic tops, women in saris with their heads covered. We went on with our evening, and a few hours later, we heard car doors closing. Billy headed to the door to see what was going on, and I asked him not to open the front door and stare. Instead he stared out he small windows of the front door. He watched until the cars were loaded and drove away. He kept looking at his watch, and he asked me what day it was. He asks me this question several times a day. I told him it was Saturday, and he said, "No, I mean what day like of the month." I told him it was May 14th. He said, "That's funny. All of those people were in costumes, and it's not even...." I know he was looking for the word Halloween, but words just don't come to Billy as easily as they once did.

One word that does pass his lips frequently is girlfriend. I mentioned several posts ago that he told me he has a girlfriend. On the way home, he told me he had met a girl, and she was really nice. I asked where he met her, and he told me that he met her at school. As he talked more and more about her, I told him she sounded sort of like me. He laughed and said she is sort of like me. I asked him where they went, and he said they just went to the lodge. That's his other word for the Cottage. He can't remember her name, but she's really nice. I finally asked him what his wife thought of his girlfriend. He said, "Wife? Wife?" as though he certainly didn't have one. I told him that I'm his wife. A look crossed his face, and he said, "I'm such a doofus sometimes." While we were eating dinner tonight, Billy told me what a good mom I am. His relationships are really blurred at times. I remember his mom doing the same. She would introduce Billy as her brother.

It's amazing how you can be with a person every day for hours and still miss that person. I see glimpses of the Billy I've been married to for 30 years, but he changes daily lately. Last night, he asked if he could spend the night with me. I told him he could spend every night with me. He was so relieved. I said, "I'm your wife, honey, and you can always stay with me." He jumped up to come give me a kiss, and then he said he felt 100% better. I miss the man who could finish my sentences for me. We had little stupid things we would say that meant something to us, but they meant nothing to others. We don't do that any more.

I don't want this blog to become my pity party. I do, however, want it to show the pain involved with this disease. We will have been married 30 years on June 13th. I'm really angry that we won't celebrate our 50th anniversary on a cruise and probably not at all. I am not certain of what Billy's life expectancy is, but I am certain that his quality life expectancy is going quickly. As time passes, I know I have decisions to make in the fairly near future. Please pray that God will reveal the best answers to me and give me the wisdom and courage needed to follow through.

Wednesday, May 11, 2011

Gotta Laugh 2

Billy's sleep patterns are hit and miss. It seems that he sleeps all night for several days in a row, and then for some Alzheimer's reason, he wakes up in the middle of the night or very early morning. This morning, it was 3:15 when he woke up and told me it was time to get going. When he starts telling me it's time to get up, I know he's finished sleeping, and it doesn't matter what I say or do. He took his shower, and got dressed, and then he started insisting that I get up and get ready. I tried to ignore him, cajole him, plead with him to let me sleep....all to no avail. When I relented and opened my eyes, I noticed he had turned on many lights. I continued lying in bed, and he got frustrated with me.

At one point, he said, "If you don't get up, I'm calling Parkwood Hill." That is my school, and at 3:50 a.m., I really got tickled about his threat. I told him no one was there yet, and he said, "Kathy, you know what you need to do. Now, get out of bed, so you can get to school." For some reason this struck me as so funny, and I did get up at that point because I knew laughing would probably make him angry. I took my time getting ready, and he reminded me every 10 minutes or so of the time. That's his way of telling me to hurry up.

When I picked him up this afternoon, the ladies told me he had a good day. He was in good spirits when I got there, and he was looking forward to going home. I told him we were going to Shelley's because I had an awards dinner to attend, and he would stay at Shelley's until I returned. I left her house at 6:oo, and I didn't get back there until almost 9:00. Shelley said he sat down to eat, and he paced or stood the rest of the time. Bless Shelley and Andrew for dealing...She said he kept looking out the window and saying, "I didn't sign up for this." Those words have multiple meanings to me. He didn't sign up for this stupid disease. He doesn't deserve it, and unless God intervenes in some way, he will not be cured. He's right. He didn't sign up for this.

Tomorrow is his day to stay home with Catherine, and I pray it's a calm day for them. She's such a blessing. She can tease with him, and get him to do things I can't. He always gives her a hug and tells her thank you for putting up with him when she's getting ready to leave. Looking forward to Thursday and praying for a full night of sleep.

Tuesday, May 10, 2011


I attended the funeral of a 26 year old young man today who took his own life. His mom works in our school cafeteria, and my heart breaks for her. I wanted to attend the funeral to support his mom, and I had no qualms about it until I was driving there, and my heart started beating harder, and my breathing got faster. That's when I realized that I was afraid that attending this funeral would bring a flood of memories about my son's funeral almost four years ago. It was impossible to suppress those memories, but they were memories of Andrew's memorial service which was a celebration of his life...good memories, funny stories, and the reality that Andrew had addictions.

This blog is about Billy and Alzheimer's Disease, and you may wonder why I am writing about this. The trauma of Andrew's death took a toll on all of us who loved Andrew, and I believe the trauma that Billy suffered accelerated this disease. The pain of losing a child is like no other. I will always have a hole in my heart, and if I give myself permission, the pain I feel is physical, emotional, and spiritual. Billy felt all of those, and with dementia setting in, he had to deal with it differently. When I think of all he went through at that time, it's amazing Billy isn't worse. He was between jobs, he drove 3 hours roundtrip two to three times a week to feed his mom supper in a nursing home because she could not feed herself, my brother was very ill with cancer, and two weeks after Andrew died, Billy and his sisters put his mom on hospice care. His memory worsened, and his confusion became more prevalent. I remember one day when he called from the Stockyards, and he didn't know where he had parked his truck. He actually did remember, but he parked illegally, and his truck was towed. He couldn't catch a break. When he saw his neurologist, I shared the trauma he had experienced, and I remember the doctor saying that there was no scientific evidence that trauma accelerated this disease, but our experience certainly tells us differently.

Sometimes I worry that Billy has forgotten Andrew, and sometimes I worry that he has not forgotten his death. I don't know what is worse, but I do know that I have no control over it, and neither does Billy. Just another very frustrating truth about this disease.

Sunday, May 8, 2011

High Anxiety...

Mother's Day was a good day for me, but I think it was hard for Billy in some ways. He had such a good week last week. His anxiety was better than usual, and he slept all night each night. The earliest he woke up was 4:15 on two days, but he came back to bed each time. The other nights he slept until the alarm woke us the next morning. Yesterday, he woke up at 4:15 and took a shower. I remember thinking to myself that it was probably going to be a tough day. After his shower, he asked me if the others were still here. I told him we were the only ones here. He asked where they had gone? I was hoping he would not dwell on it, so I didn't ask who the others were, and I answered that I didn't know where they went. I got him to come back to bed finally, but he kept forgetting that we could sleep later, so he kept waking me up to ask what day it was and did we need to get up. We did stay in bed until 8:00, and I gave it up after that.

While he seemed to be in a good mood for the most part, Billy seemed to be confused for most of the day. When I look back on the day, I realize that I probably had too many different things going on for us. I wanted to go by and visit my sister and her family and then run some errands. I told him what I wanted to do before I ever got into the shower, so while I was in the shower, Billy felt a need to turn off the televisions in the living room and bedroom. He panicked about it and came to tell me he had messed up the TV. He tells me this pretty often because even though he doesn't know how to operate the remote control, he continues to try. I have no idea how he gets it to the channels he does, but I spend a lot of time undoing what he does. Nothing is ever fatal, of course, but he panics. Note to self: leave the channel tuned to ESPN, and he'll most likely leave it alone.

After we got ready to leave the house, we went by my sister's to visit for a bit, and since we recently lived there, Billy is pretty comfy and calm when we are there. We needed to do a little shopping, and I did narrow it down to Target and Home Depot, and I hoped that would help. I could easily spend a few hours in each store just toodling around, but Billy wants to know what we are buying in each store, and then he's ready to split. The irony of this is that Billy was always great about shopping around with me. He enjoyed going to the mall much more than I did. Where his mode was usually relaxed and easy-going, his mode is now to go as fast as possible at whatever he does. This includes his meals, sweeping the floor, anything he does. I think part of it may be that his sense of time is skewed. I was watering the yard the other night, and I had set the timer for 15 minutes, so I could change the sprinkler after that. That worked for my first rotation. Billy follows me wherever I go, and he was on my heels when I moved the sprinkler to another location. My idea was to retreat inside the house until the timer sounded again, and he did follow me in. He sat in his chair, and sort of like a wind up Jack in the Box toy, he jumped up after about 3 minutes to "check on something outside." I followed him after a minute or two, and there he was, taking apart the hose and sprinkler to put them away. I gave up at this point, and finally got him inside. He literally could not sit back in his chair because he was so anxious.

I kept asking him to sit down and relax, and he kept apologizing. He has some awareness of how anxious he is, and that bothers me. He doesn't want to be like this. I do believe his anxiety is better during the day because the folks who work with him at the Cottage see improvement. And as soon as I give him his anxiety meds and Seroquel in the evening, he settles down so much that he usually falls asleep in the chair. What gets to me are his constant apologies for being like this, for being a pain to live with he says. I try to assure him that he is not a pain and he owes me no apologies, but I must be giving him some signal of my frustration. Otherwise he wouldn't feel so apologetic.

I pray for calmer weekends, more patience on my part, and even better control of Billy's anxiety. One of my friends who is a caretaker for his wife of 53 years tells of similar experiences, and he often says, he just wants peace for his wife. I feel the same. I want peace for Billy.