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.

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 Terri...it 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.

"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.

Pity Party

I don't cry often. My face gets splotchy, my nose gets stuffy, and I am anything but pretty when I cry. I'm afraid if I start crying, I won't be able to stop, and for the last hour and a half, I've been right about that. I can't stop. So...I'm writing to get all these thoughts out of my head onto paper, and hopefully, my thoughts will settle down, and I can sleep.

I'm not certain what triggered my pity party tonight, but I it has become a full-blown wallowing session. I'm coming out of it, and now I'm just angry about so many things. As I write I realize that the trigger may have been that I called the "new" daycare today to make certain all things were set for Billy to go there on Thursday and Friday of this week. I've learned very quickly that the person in charge of this place (I'll call him Noel which is the backwards spelling of his name, but I want to protect the ignorant for now) is very scattered to say the least. Shelley and I toured this place months ago, and Noel spent almost two hours with us showing us around, explaining how everything works, asking about Billy. I told him that I need daycare because I work, and Billy cannot be alone. I told him that I had heard great things about this place, but I never checked into it because they advertise their hours as 9-4:30. I had also heard that they might be willing to work with me on that. He was so pleasant that day to say that not only would they take him early and keep him a bit late - they would not charge me extra for that. Fast forward a few weeks. I've now decided it's time to give it a try. I call Noel, and after a few reminders, he seems to remember me. He sets up an assessment time, so their nurse and director can come to the house and see that this is an appropriate place for him.

The assessment takes place the next week, and the director asks me when I think I might start taking him, and I tell her the next week sounds good. Nothing else is said about what I need to do. The next week, I call Noel to see if I can bring him that Thursday. Oh, now wait a minute, Billy has to have a TB test, and there is paperwork to fill out. I take Billy to the CVS clinic and have a TB test done, and I await the emailed papers. When I receive said papers, I find that in addition to the novel I will need to write before taking him, I also need copies of the powers of attorney, copies of his Medicare card (because all disabled folks have Medicare, don't they - don't get me started), and his driver's license and supplemental insurance card. I write the novel. I make copies of the POAs, and I call to tell Noel that since it's Thursday, we'll just wait until the next week. By the way, Noel tells me, we are full on Wednesdays, but I'll put you on the waiting list.

No need to fast forward....just move at a slow pace, and I will call several times with no return phone calls, but I did finally catch a moment when Noel could come to the phone. We set up a time for me to take Billy, and I need to be prepared to stay and visit with the nurse for a while. I told Noel that I would drop by the day before with all the paperwork, so maybe we can expedite things. That brings us to last Thursday afternoon when I took the papers by on my way to pick up Billy. I was buzzed in, and I asked to see Noel. He came up, and I extended my hand and said my name. He looked at me and said, "You look familiar....like we've met before." Well, yes, we have when I toured the place several weeks before. He took me into the library, looked over the papers, and he asked for Billy's Medicare card. HE DOESN'T HAVE ONE BECAUSE HE IS NOT ON MEDICARE! Noel looked puzzled, and I tell him the Clif Notes version of why Billy is not on Medicare. We decide the time I will bring him on the first day, and as I leave, Noel says, "It's so nice to meet you finally." I feel certain you are getting the picture by now. I take Billy the next day, all seems to go well, and as we are leaving I tell Noel that I plan to bring him on Thursdays and Fridays. According to Noel, that will be great. I tell him that I will call this week to talk about when I need to bring him because I work. Oh, well...now those decisions have to be made by the regional manager.

That brings me to today. After leaving 3 messages earlier this week with no response from Noel, I got lucky again and called when he was available today. I tell him I plan to bring Billy tomorrow, and I have to be at work by 7:00 a. m. He asks me to hold just a moment because he has to ask his executive director who apparently is in the office with him. He covers the phone, and then he comes back to me. "What time will you be able to pick him up?" Either Shelley or I can pick him up by 4:30. "My executive director says you can bring him this Thursday and Friday at 7:00, but after that it will have to be evaluated."

I guess I've done a slow boil since then. Noel doesn't have his act together, he can't remember meeting me and probably doesn't recall saying that early and late would not be an issue. I may have been wrong about this being the place for Billy. I am not unhappy with him at the Cottage. I am concerned that as he progresses, he will be more difficult for them to handle, and because he moves around so much, I am concerned about him walking out and wandering. He's been upset and told them he was just going to walk home. He's not acted on that, but every time I drive down the highway and see those signs that say Missing Elderly, I think about him. Those people may have been trying to get home also.

In the midst of my crying jag tonight, I think I've decided that I need to leave things alone for now. I'll take him tomorrow and Friday and assess it further, but I want him where he's wanted and not thought of as a bother. The "new" place advertises that they are "family owned," but they have many assisted living homes in the US, hence the Regional manager, the executive director, the director... The Rose Cottage is owned by Howard and Maureen, and they are often at the cottage when I go pick up Billy. It's sort of like he's visiting their beautiful home. I think Billy has a crush on Maureen because he sticks to her like glue.

Yes, the drive is long, and gasoline is hideously expensive right now. But we can eat out a few less times during the week, and that will help with gasoline. I can start getting books on CD and listen to those on my rides. I enjoy talking on the phone while driving to pick him up also. This will work out just fine. And at the Cottage, he is loved. I know he's a handful sometimes, but they love him. And it's hard to find a corporation that loves your loved one as much as you do.

The tears have dried up, and I can almost breathe out of my nose now. I'll grab some shut-eye before we start the day afresh in a few hours.

Transition Time

Taking Billy to a new daycare on Friday morning was tough. I didn't remind him until that morning that he was going, and he handled it better than I anticipated. He told me he would go "just this once," and he proceeded to ask me the following...

1) Are there a lot of old people there? Yes, but you're around older people every day. But is everyone elderly? No, there are some younger people there also.

2) What time will you come to get me? 4:30 What time do they close? They don't really close because some people live there, but I will pick you up by 4:30. (This question was asked approximately 47 times in a one hour period.)

When we arrived, the nurse spent some time with us asking some questions about routines and what Billy can and cannot do. At one point, she looked at Billy and said, "And you taught school?" to which he replied, "I still do." She asked where all he had taught school, and I was trying not to answer every question. He searched for the answer and finally came up with Burleson. That is where he went to high school and graduated, but he has never taught there. No big deal, though.

It took me 7 minutes to go from our driveway to the new daycare - Autumn Leaves. What a joy! My gas gauge did not move a quarter of a tank from the drive, either. When I arrived to pick him up, he was not in the common living area, and in a minute or two, he came into the room with the director and another employee. The director told me she had put him to work, and that he had been looking for me since 3:00. That is pretty much the norm for Billy.

On Friday evening, I received a phone call from the caretaker who meets me each morning and takes Billy on to the Cottage. She wanted to know how he had done at the new daycare, and I relayed that to her. She went on to tell me about an outburst Billy had on Wednesday. She had mentioned on Thursday morning that Wednesday had been a really rough day for him. He had called me twice from her phone, but he answered each time and asked when I was coming. No one else got on the phone to talk to me, and when I picked him up on Wednesday, nothing was said. It's difficult to discuss things with the caretakers when I pick him up because he's by my side from the moment I get there. I try to get him to go the restroom, but he never needs to.

Apparently on Wednesday, he became very angry about still being there, and he wanted to go home. He paced as usual, and when he got really angry, he pushed a chair and cursed. They know this is totally out of the norm for Billy. He never curses, and he rarely gets angry. That day, he told them he was just going to leave and walk home. Even though I don't believe he'll really do this, the Cottage is not secure, and he is able to walk out. The new daycare is a secure facility and specializes in memory care.

I'm sad that Billy had such an outburst. He is such a pleasant person, and even though he is different in so many ways and he gets agitated, he rarely gets angry. A new behavior to deal with, I guess. When his mom was in a nursing home, she had to be moved to an Alzheimer's facility because she was becoming so aggressive and punching people. This was so out of the norm for her. Chalk it up to one more stinking issue that arises with this disease. I hate Alzheimer's Disease.

I am very hopeful that the new place will work out eventually. I believe we are on the right track, and I appreciate your prayers about the appropriate place for Billy.

The picture above was taken on Saturday when Billy looked great and seemed to be very happy.

Beautiful Photography Project

A friend shared this link with me today, and it's worth sharing....

http://www.aarp.org/health/conditions-treatments/news-07-2011/targeting-alzheimers-disease.html#.Tidq5weY1WY.email

Click on the title "Remembered: Alzheimer's Photography Project" and enjoy. Thank you, Karen, for sharing this with me. I intend to send Billy's pictures in to share also.

Tomorrow will be Billy's first day at the new daycare. Pray all goes well.

A Calm Weekend

Those who know me well know that I value a calm atmosphere. I'm not into drama except in movies and TV shows. I've experienced a great deal of drama in the past few years, and because I supervise many people, I encounter drama in my job often. With Billy having Alzheimer's Disease, we don't always have a calm atmosphere, so when we these times occur, I savor it.

I notice that Billy does better in his own environment, so I had dinner at our house for my sister, brother-in-law, and Claire and Connor. Claire LOVES Aunt Kathy's meat loaf, so there is no question of what I make when they come for dinner. Billy really enjoyed the kids being here, and he always loves being around my brother-in-law, Shawn. We teased Billy about his voracious appetite. He was losing weight steadily for months, and with the change in medications, I can't fill him up at night. At bedtime last night, I told him he couldn't eat anything else as he went for his second or third helping of ice cream after having cobbler for dessert.

Things were different tonight, though, as he brought home half of his sandwich from Jason's Deli. As the disease progresses, I notice behaviors that we saw in his mother, and it's unnerving sometimes. One thing she did was wrap up her food in napkins at various meals. A few weeks ago, we were having supper at Whataburger before church, and as we sat down, Billy pulled a bunch of napkins out of his pocket. I asked what he had, and he said, he thought it was a cookie. As he unwrapped it, I could see that it was part of his lunch. He often feels pressed to be finished, and he feels he can't finish his meal. I eat very slowly, so I always tell him he might as well finish his meal because he has to wait on me anyway. He did this again tonight and started wrapping his sandwich in about 5 napkins. It's all I can do not to admonish him, and I appreciated that my sister-in-law went to get a takeout box for him.

Today was a very pleasant day, and I am so thankful for that. I feel certain that Billy gets bored on weekends when we don't have scheduled activities. I love those weekends, but he wants to know what time we're leaving, and I often have nothing planned. I've learned it's best to run a few errands or go get lunch, as long as he has a little outing. He asked to go out for lunch, and he even named the place he wanted to go, so off we went to Joe's Coffee Shop. He rarely has a specific request because he can't remember names of places, so I was happy to comply, even though it would not have been my choice.

It was suggested by my Alzheimer's counselor that I give Billy his Xanax regularly rather than waiting until it's "needed," and I believe that is helping with his calmer demeanor also. He never got into his usual Saturday anxiety of "when do we leave for church" like he usually does.

I know that all of this can change in the next hour, but I want to relate the good times as well as the distressing times, and I know from whom these blessings come. Praise God for still waters.