Wednesday, July 27, 2011

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 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, 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.

Sunday, July 24, 2011

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.

Thursday, July 21, 2011

Beautiful Photography Project

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

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.

Saturday, July 16, 2011

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.

Monday, July 11, 2011

Happy Birthday, Billy!

We celebrated Billy's 55th birthday on Friday evening, and he loved it. He smiled all evening as we had lots of friends and family (about 40) in our home for cake and ice cream! Thank you to everyone for coming to wish him a great birthday. In light of the daily behaviors we see with Billy, I'm amazed at how well he does when we have a large group of family and friends surrounding us. He really enjoys the company of so many that he knows. He doesn't always know names and relationships, but he knows faces and realizes that these are special people to him. Many of Shelley's friends came to wish Billy a Happy Birthday, and after most everyone else left, they stayed a while. We had Billy sit down to open all of his cards, and he entertained the group with his funny comments. He was in such a great mood, and even though we often didn't know what joke he was making, Billy kept us laughing. That is the Billy I've known for 35 years - the one who can make the crowd crack up with his wit. The wit is not as sharp, and I become a bit apprehensive when he starts to speak, but the laughter follows, and that is delightful.

I am working on getting Billy into an adult daycare program closer to home. I have several reasons for trying to make the change. First of all, the location is bout 5 miles from our house as opposed to the 25 miles between the Cottage and our house. The program is in an assisted living facility that is specifically designed for Memory and Alzheimer's Care, and it is secure. The staff is trained to deal with the quirks of the disease. Finally, the program is less expensive than the Cottage. In addition to a less expensive daily rate, every Wednesday is free at this one. The glitch is that Wednesdays are currently full, and they don't have room for him that day, so he's on a waiting list. All of these are good reasons to change, but if Billy doesn't do well there, I'm not in favor of it. Change is really difficult for him, and I don't know how he will react. If his days are uneasy, that carries over to home, and the struggle gets worse. Please pray for a peaceful transition if that is best for Billy.

I must go now and see if I can get Billy to bed. He fell asleep on the couch for about an hour, and now, he thinks it's morning. :)

Saturday, July 9, 2011

New Design

I've been playing with the design of this blog and made some changes. Although I really loved the theme of the last background, I found it made it difficult the read the text, so I've made some changes in the background. Alzheimer's Disease is represented by the color purple just as breast cancer is represented by pink, so the background is purple.

Thank you for reading this blog and supporting us. Your constant prayers and support keep me encouraged and upright as we care for Billy. Please continue to read, and I will keep on writing.

Sunday, July 3, 2011

Great Weekend and Happy Independence Day!

Billy and I both come from loving families, but they are different. My family gets together as often as we can - birthdays, holidays, and just because days. Billy's family gets together once a year - Christmas Eve. They are close knit within their immediate families, but the extended group - not so much. Billy's 55th birthday is July 12th, and because his decline has been so rapid lately, Shelley and I really want this to be a special birthday for him. We are having a party for him this Friday night, and I called his older sister to let her know. Unfortunately she will be out of town, but she invited us to her daughter's house this past Saturday for a pool party where her three children and all of her grandchildren would be together. So, off we went to buy Billy a swimsuit and sunscreen for Saturday. It was great to see him enjoy his family so much. I doubted he would swim because I chose not to, but I sat outside with him, and he actually got into the pool. He was not anxious to leave, and in fact, I was the one to say we needed to go in time to get to church on time.

After church on Saturday evening, we had dinner with family and friends, and Billy was relaxed and talkative. He did get very nervous when I told him we were meeting my sister and her family and some friends at my school to watch fireworks from the roof of the building. We've done this for the last 5 years, and he's always enjoyed it, but this year, the anxiety got to him. He did calm down some after we all got up to the roof, but he was really relieved when it was all over.

On Sunday, we enjoyed a relaxed morning, went grocery shopping, and had lunch with Shelley and Andrew at our house. Afterward, Andrew agreed to hang out with Billy while Shelley and I ran some errands for a few hours. Billy really enjoys Andrew and feels comfortable with him, and Andrew is an awesome young man who is very patient with him. According to Andrew he didn't seem real anxious but he did talk a lot about us playing soft ball on Sunday night. Who knows where that came from...I can guarantee I had NO plans to pay softball that night or any other nights in the future. But by the time I got home, and we talked a little, he made no mention of it. We ate and went to my sister's house to visit, and he really enjoyed himself. Another really great day for Billy!

Today we celebrated July 4th with my parents who live about 75 miles away. We had hotdogs and Mom's homemade peach cobbler. Billy couldn't compliment the cook enough! He kept us all wondering what he might say next, and I'm sure I was the most nervous. I would describe his actions as silly when he's in a good mood. At one point, my dad and I were talking about a cruise he and Mom had taken, when Billy interrupted, and looked at my dad to say, "Let me ask you something." I held my breath for a moment because he's said that to me a few times lately, and then he says something like....Can I sleep with you tonight? I couldn't imagine what he was about to ask my dad. Then he said, "If we were to invite you, would you come spend the weekend with us?" I was really relieved and amused at the same time. My dad knew we had given Shelley and Andrew our guest room bed, and he told Billy, we didn't have a place for them to sleep. Without a moment's hesitation, Billy said, "I'll be sleeping on the floor." His intent was really sweet. He loves my parents, and he wants them to visit, and that was on his mind. He'll be thrilled when they come for his birthday party on Friday evening and actually spend the night because I got a bed for them. :)

Billy seems to be at a stage in the disease where his emotional maturity is much like an adolescent boy. He gets very silly and says things that he thinks are humorous and laughs easily. Many of the things he says do not make sense. The words are real words, but I don't know what he's talking about. As Shelley says, his filter is either turned off or missing. It's hard to be around him and not laugh with him. It's infectious, but we aren't sure what we're laughing about. He's also very quick to express his feelings, and as we left my parents' house today, he gave my dad a hug and said, "I love you." Even though I have a close knit, loving family, my parents have not always said those words readily. I've never questioned that I was loved, but we didn't make a practice of saying it out loud. Billy's family has always been very open about saying they love each other, and Billy has always said that to his family members, but recently he says it to his caretakers, and today to my dad. My dad's response to him was, "The feeling is mutual." And I believe it is...