Monday, August 22, 2011

Things I've Learned To Do

I can do all things through Christ who strengthens me. Philippians 4:13
So many meanings to me...I can endure...I can handle....I can hold on....I can make decisions....I can do what needs to be done.

I must thank my parents, Roark and Alyce, for helping me become independent from early on. They taught me to think and question and not to accept everything just because someone said it. I remember asking questions about what I had heard from our preacher at a church service, and my dad told me that the preacher was a man like any other man, and I shouldn't believe things just because I heard them from a pulpit - I should study the Bible on my own and find the truth in scripture.

When I was fourteen and my brother was eleven, my sister was born. Mom stayed home with Leslie for a few years, and then she went back to work. I remember we had a family meeting, and my dad said that since Mom would be working later hours, we had to help out more around the house. My job was to plan and cook supper each night during the week, and my brother was to clean the kitchen. They trusted me to take care of dinner for our family of five, and I did it. About a year later, I started driving, and Dad taught me how to put gasoline in the car. When they bought my first car, a 1961 Chevy Impala, my dad showed me how to check the oil and how to change a flat tire. In case of emergency, he wanted me to know how to take care of myself.

I never thought of myself as a total feminist, but I do believe women can do a lot of what men can do. I love when I have my oil changed and a woman is the one who is changing it. I like seeing women police officers and fire fighters. Even though I believe independence is a choice, I didn't want to take on everything, and I liked that Billy took care of many things related to home and car maintenance. He did most of the yard work, but I didn't mind mowing when he wasn't around to do it. One summer he was in Washington, DC for five weeks, and I kept the yard mowed, trimmed, and managed to make small repairs.

As the Alzheimer's Disease progresses, Billy's ability to complete tasks is compromised. He wants to help, and I try to include him in certain chores, but it often becomes so frustrating to him and to me, that I just take over. With the incredible heat this summer, we are trying to keep one planter alive. It needs water daily, and Billy volunteers to water it. The water hose is stored on a reel on the side of the house. The faucet has a splitter on it, so you can hook up two hoses at once, but we have just one hose connected to it. One day when Billy was going to water the plants, I wondered what was taking him so long. When I went to check on him, he was hooking up the free end of the hose onto the other faucet and turning them on. Surprisingly, the hose didn't burst, but he needed help.

There was a time when I would wait for Billy to fix something. He could handle most anything, but in the last few years, he can do less and less. He's always changed the bulbs in the headlights or tail lights of the car because he had a strong aversion to spending money on something he could do. Now, I've learned to change the bulbs, and I carry extras in my car. He also took care of cleaning out the bath tub drains when they started slowing down. Now, I do that with my handy dandy Zip It tool. It's gross, but nobody else is going to take care of it.

I've cleaned off the cable connections of my car battery, pulled the battery out when it still didn't work, and nearly dropped it because I was not prepared for heavy it was. I took it to O'Reilly's where we've bought our last several batteries, and I was thrilled to get an adjustment on it. I get the oil changed regularly, and I get the tires rotated. One thing I have not mastered is changing a windshield wiper, but I can buy it and get help.

I've learned to do things, and I've learned to ask for help when I don't know how to do something. I depend a great deal on family, and I am so grateful for them. My sister and brother-in-law live about 5 minutes from us. Shawn is the family resource on anything to do with technology. Actually, Shawn can fix almost anything, and if he needs help, he calls my cousin, Travis. The two of them together have just about any tool known to man, and neither of them are afraid to tackle a household repair. My daughter and son-in-law live nearby also, and they are a wonderful help with Billy. My Uncle Bob is great about providing his pick-up truck if I make a purchase that doesn't fit in my car. My sister-in-law and nephews live very close by and are just a phone call away. We are blessed by family and friends.

Monday, August 15, 2011

Ready or not, the kids are coming

Teachers came back to school yesterday....a sure sign that we'll have students very soon. I love this time of beginnings, positive attitudes (for the most part), and it's great to see everyone after a few months away. I have about 2 weeks off in the summer, so I spend a good bit of time working alone during the summer. It's good to have everyone back on campus and hear the busy-ness in their voices.

As much as I love this time of year, I've allowed some things at work get to me lately, and that's not like me. I can usually go with the flow and let things go, but I've taken something personally that probably isn't. I've spent some time trying to figure out why I'm allowing myself to get so upset about this, and I think it's misplaced anger about this stupid disease. Alzheimer's robs you of your loved one little by little. I can't be angry at Billy because he's not at fault, but I'm angry that he has this disease that has taken my husband as I knew him. We no longer have conversations like married couples have. I'm not sure I can even categorize them as conversations. We talk, but it's usually me trying to figure out what in thunder he's talking about. I simplify what I say to Billy because I don't want to confuse him. I miss talking to Billy about work issues. This whole ordeal that has upset me at school, would have been something I could talk to him about. I enjoyed that we shared the same profession for several years because we could share stories without too much explanation. When something is bothering me, I don't share it with Billy because he isn't able to comprehend some of the issues. I try to keep it simple and direct. Billy's attention span is short - as in seconds long. Unless he's obsessing over something in which case he cannot let it go. Yesterday he was stuck on where his car was because according to him it is actually his mom's car. He asked several times if I thought he should call his mom. I never know how to handle this, and I handle it differently each time. I told him we couldn't call his mom, and he looked at me for a long time. I said, "Your mom is not here anymore." He looked down and said, "Yea, I've just been thinking about her a lot."

I have a rare opportunity to speak as an advocate in a few weeks. Our local chapter of Alzheimer's Association is hosting a Town Hall Meeting regarding the National Alzheimer's Project Act that President Obama signed into action last January. We have the opportunity to be heard by several people who will report back to the Secretary of Health and Human Services. Our caseworker asked me to have a 3-5 minute statement to read. I pray that God will give me the exact words I need to say all that needs to be said about Young Onset AD and the needs of it's victims. One of my goals is to become a true advocate for Young Onset victims. Please pray for me as I pursue this.

Billy seems to be holding steady these days, and that is a blessing. He's sleeping well, eating well, and he does not seem worse. I am makes our lives easier.

Wednesday, August 10, 2011

Prayers Answered

So many of you prayed for a better day for Billy today, and as always God answered immediately. I wrote a note for him to carry in his pocket this morning, and in addition to telling him what time I would pick him up, I told him to do whatever Terry told him to do. I never got a call today which was very unusual (and might be because the nurse who fills in doesn't let him talk her into it), and when I arrived, he was not at the door. He came very quickly when he heard the door open, but everyone was sitting in the front room. I asked Terry if he got a happy face or a sad face, and she said more happy than sad. The nurse confirmed that he was much better today.

It may have something to do with the note I wrote, or he may have been better just because. Alzheimer's Disease is so unpredictable from day to day. We currently have more "good" days than "bad," and I am thankful. Thank you for your prayers. Tomorrow may be more difficult because Shelley is taking him to meet Terry in the morning. I have to be at the hospital for a minor procedure at 6:00 a.m. Variances from routine can mess up his days sometimes.

Tuesday, August 9, 2011

It's Always Something

I noticed as I left a meeting this afternoon that I had two missed calls from the Cottage. Debra, the nurse who has been there for the last few months, typically lets Billy call me in the afternoon around 4:00. During the summer, I've nearly always been available, but today I was not. I called her back, but she was with another client, so we didn't talk, but she said in one of her messages that if this was a good time, she would let Billy talk to me each day at this time. When she's called before, she always asks if it's okay, and I really don't mind if it helps Billy settle down a bit.
I started my trek to the Cottage around 4:30, and I had to stop to fill up with gasoline. It was 5:25 when I arrived there, and as soon as I opened the door, he stepped into the entryway. The door to the daycare is kept closed, and Terri tells him NOT to go out that door. I could tell when I saw him and heard Terri scolding him that it had not been a great day. When I asked Terri how long he had been like this, she told me it started before lunch today. He wouldn't sit down to eat lunch, kept getting up to walk around or go to the restroom. After lunch he was to stay in the TV room at the back of the Cottage with one of the caretakers, while Terri and another employee took an online test. He would not stay in the room, and kept going into the nurse's office.

He was the last one to get picked up today, and I'm sure Terri wanted to wring his neck. She told me that for about 15 minutes before I arrived, he kept telling her he was leaving no matter what. She told him that if he did that, she would have to call the police. When he saw me he started apologizing to was like he got caught being naughty by his mom, and he was trying to make it okay. This has become a pattern with him, and I'm not sure how much he understands. He seems very adolescent - or younger.

I told Terri I planned to visit with the owner about possibly locking the door into the daycare, and she said it cannot be done because of regulations of some kind. I'll have to get more information on that, but I would feel better if it were locked. I would feel even better if Billy didn't get so ornery with Terri. I feel like I need to put him in timeout when he's like this, and when I talk to him, he responds in a reasonable way, but I don't really think he comprehends what he did. Being child-like is one thing, but if he were a child, I could reason with him better. He promises not to do whatever it was he did, and then he does it again. The apologies begin again.

Please pray for Billy to be more compliant at the Cottage. I think they are happy to have him there, but if it becomes unsafe, I'll have to consider other options. And we know how that goes. Our past prayers have been answered, and I don't doubt that this can be done also. He is resting at night now, sleeping soundly, and what a huge blessing that is.

Monday, August 1, 2011

"Listening" to my gut feeling....

If you read my last blog, you know I planned to take Billy to the "new" place on Thursday and Friday. We arrived there Thursday morning at 7:00, and when we buzzed in, one of the caretakers asked if she could help us. I asked her if Noel had told her we were coming early, and her answer told me what I already knew, "Of course not!" It think the folks who work with Alzheimer's patients are very special people, and these are no exception. But the management of the place leaves too much to be desired. On Friday I took Billy back to the Cottage.

As I was leaving, one of the RNs talked to me about taking Billy for a ride in the afternoons when he gets so anxious and agitated. Of course, it's great with me, and again the difference in the Cottage and the "new" place hit home again. They think outside the box at the Cottage; they look for solutions to the issues that Billy is experiencing.

Enough said. I'm going with it, and when I start complaining about the drive, I will go back and read through these posts. Billy is worth the drive.