Sunday, February 26, 2012

How's it Going?

This is the question I'm most asked. How's it going?  How's Billy doing in his new place? The day I took Billy to Lexington Place on January 24th, I never dreamed that he would be doing so well in less than a month. The day that Shelley and I took him there and tried to explain the decision to him was horribly painful.  The pain was not quite as intense but comparable to the loss of our son in 2007. The pain was physical, and my heart hurt. Shelley and I cried and cried.

 My friend, Karen, who had to place her husband in assisted living over a year ago, had warned me that it would be awful. She also assured me that it would get easier. I wanted to believe that, but it just kept hurting. I would start questioning my decision, and then I would remember the challenges of caring for Billy and the very real lack of funds to continue paying (and owing) for daycare. The first evening we were leaving Billy, the director of nursing spent a while talking with us. She told me this would be more painful for Shelley and me than it was for Billy because he would forget. She was right about that. 

For the first time in a few years, Billy is calm nearly all day. Alzheimer's causes great anxiety and agitation for its victims. They pace, wring their hands, perspire, and worry in general. Sometimes they snap at others just because.  The good thing about Billy being at the new place is that he is observed by medical staff all day. He sees the doctor's PA every Monday, and he sees the psychologist's PA every Tuesday. They can adjust his meds as they see the need where before he lived there, he saw the doctor every 2-3 months. I could call the doctor, and her nurse would relay messages, then we would play phone tag for a while until we touched base again. Now, the PA can see him on Tuesday and start his new dose or new meds by the next dose. 

He eats his meals at the same time every day. He has activities that he can do. He's become the "helper" because he's not as advanced in his disease as most of the residents in that area. He helps put away trays, moves chairs, and visits with the residents. During meal time the staff puts music on instead of the television. So many AD patients have issues with eating, and they don't need the distraction of the television. One evening they were playing old time country and western, and Billy shared with the staff that Ernest Tubb was his second cousin, or as Billy says, his first cousin once removed. Billy's dad, Tommy Knowles, was Ernest Tubb's first cousin, and back in the 50s and early 60s when Ernest would come to Fort Worth to perform, he and Tommy would go out honky tonking.  Needless to say, Billy's mom was less than fond of old Ernest, but that's another story altogether! The staff got a kick out of Billy talking about cousin Ernest. I love that so many of the residents who hardly remember their own names can sing along with these old songs. Walking Betty rarely talks, but she smiles and sways to the music. Smoking Betty sings along. 

I go visit Billy every evening with very few exceptions.  Sometimes I have other obligations like school board, PTA, etc. Once a month, I go to dinner with Karen, and when I don't make it to Lexington, Shelley goes to visit.  She goes most evenings, too, but sometimes it's too much with her schedule. If we get there by 5:00, we take Billy to the main dining room, and he seems to enjoy that. Many evenings he's the only male resident who eats in there, and the little ladies love him because he smiles and greets them as though he's known them forever. I'm stopped frequently by staff members who tell me what a sweetheart Billy is. They are right, you know. Billy is one of the best people I know. He has a big heart, and he loves openly. I know the time may come when he has a glazed look in his eyes as so many of the AD residents have.  They don't seem to recognize anyone and struggle to communicate. That is hard for their loved ones, but they just keep on talking and loving on them remembering how they were. 

I can truly say that it's getting easier...I don't know if I can say it's better, but it is easier. There are times when I have moments of envy. I wish I could travel with my husband...we had great times when we took trips. I wish we could have a date night where he surprises me with dinner and a movie. I still remember the last time he brought me flowers, and I loved it.  He really couldn't remember why he had bought them for me...but it didn't matter; it was a beautiful surprise. I get over those moments pretty quickly when I think about the blessings we've had and still have. Billy still recognizes me, and he is always quick to tell me how much he loves me. He can still hold my hand and give me a hug and a kiss. The rate of his decline is less than some. Some with Early Onset decline so rapidly that they pass away in five years. Billy is pretty healthy other than this insidious disease. I've mentioned Karen several times in my posts, and her husband was put on Hospice about a month ago, and he's not expected to live for more than about six months. I'm thankful I'm not facing that at this time. 

I am blessed. 

Peace and love to all. 

I took Billy to Sonic for a hot fudge sundae this afternoon! We enjoyed a lovely Sunday afternoon. 

Monday, February 13, 2012

Who were they before...

Today is the 21st day that Billy has lived at Lexington Place. I'm sure the time has gone much more quickly for me than it has for him, but it's hard to tell.  The sense of time becomes warped for those with dementia. Many times Billy thinks ten minutes is an hour, or he talks about something he says happened a few years ago that was actually fifteen years ago. I'm not certain how long he thinks he's been at the new place, but he seems to be settling in somewhat. He's never really ready for me to leave, but he doesn't fuss too much. He often thinks he's leaving with me, and I still have a jab in my heart each time I tell him he's staying there for the night. But he's calmer. 

The first few weeks were difficult for Billy and those who cared for him. The nurses asked me several times what Billy enjoys doing in hopes that they could redirect him during his times of high anxiety. Sadly, I couldn't think of anything. He loved reading until it became so difficult for him. He worked crossword puzzles up until about eighteen months ago. I called one of the caretakers at the Cottage, and she said they struggled to find something for him to do. He did word searches for about a year, and then he got to where he would just underline the words to be found. I went to pick him up Sunday afternoon, and when I entered I found him sitting at a table with three little ladies, coloring a Christmas tree. I was happy to see him sitting calmly, but it's hard to describe the feelings I have when I think of how much he's changed. Billy read voraciously, wrote beautifully, and was full of knowledge in most areas of American and Texas history. Our kids went to him when they needed to write a paper, even though I was a writing teacher for years. And now, he's doing coloring pages. I hate Alzheimer's Disease.  

It didn't take long to develop a routine for the evenings. Sometimes, though, I have a crisis at school and, those are the times I get there later than I like.  I try to be there by 4:45, so I can take him to the main dining room which is a much more "normal" atmosphere than the one in the "unit." We sit at the same table with a man named Bobby who sits by himself when we are not there, and I believe it's by choice that he sits alone. Bobby greets us and smiles each evening, and then he says nothing else throughout the meal. He eats the same meal each and every night - two bologna sandwiches on dry white bread and two cartons of 2% white milk. Actually, he doesn't always eat, but he is served the same meal each night. The servers tell me that is all he will eat. Billy's appetite varies. Some nights he eats every bite and would eat more if offered. Then he has nights when he eats very little. I like when he eats all of his food because it's a signal to me that he feels well. 

After Billy finishes his dinner, we go back to the "unit" and  watch television in the sitting room. Shelley and Andrew have often joined us by that time. As the other residents finish up their dinner, various ladies come to join us in the sitting room. They enjoy visitors, and we enjoy them. Two of the ladies are like school girl friends. One often leads the other by the hand, and they sit together on the couch. We don't understand anything that either of them say, but they are pleasant and like to join us. We often have the two Bettys come by. The only thing similar about the two is the name they share. We identify them by their favorite activities - Betty the smoker and Betty the walker. Smoking Betty lives for her next cigarette, and she's still quite articulate. She often mentions how much Billy reminds her of her only son who comes to have coffee with her each morning. She tells me she owned her own beauty shop for years, and I've never seen her without her coat, gloves, hat, and scarf. I asked her if she's cold all the time, and she says it's cold when she goes out for a smoke, and she wants to be ready. Betty the walker rarely speaks or smiles, but I've caught her doing both at least once. She has beautiful porcelain skin, thick silver hair, and the body of a long legged model. She walks when she's not lying in bed. Apparently she was a volunteer at Lexington Place many years ago long before she had Alzheimer's, and she said if she ever had to be in a facility, she wanted to be there. 

One of the more colorful characters in the area is Ginger. Ginger is a tiny little lady who scoots around in her wheel chair and hates getting showers. She communicates her feelings loudly, and she really likes to visit with Andrew and Billy. She often has her baby doll with her, and she shows us how cute her baby is. Sometimes she shouts at the other ladies to get out of the room...just because. There are two nonverbal patients who scream, and Ginger tells them to shut up or stop that! One evening when I was running late, Andrew and Shelley were with Billy in the dining room of the "unit," and one of the tougher residents grabbed Ginger's baby doll. Ginger yelled at her and called her a bitch. The doll snatcher turned and lunged at Ginger calling her everything but Ginger. The nurse separated them and sent Ginger in to sit with Shelley and Andrew while the doll snatcher yelled, "You better watch your back!" Shelley assured me that Ginger had the last word and got her baby back. 

So many personalities and so many different stories. I look forward to getting to know all of them more. They are each more than this disease that robs them of their memories, their histories, and their voices. I want to know each person's story of who they were before this disease struck. I hope I get that opportunity. 

Peace and love to you all. 

Saturday, February 4, 2012

The Big Move, Part II

I've started this post three times, and I intend to finish this one. I'm starting earlier in the day, so I shouldn't fall asleep while writing this time. I don't know that I'm any more clear-headed than usual, but I am awake.  The last two weeks have been busy, hectic, emotional, and difficult, but God holds us up and gives us what we need to get through it all.

The questions I'm asked most lately are, "How's Billy doing? How is he adjusting?" Those are hard to answer. Every day is different - just like the days when he was living at home.  He has days that go more smoothly than others, and I hope he has some good days, but I struggle saying that he's okay. He's not okay - he is confused - most days he tells people I'm his wife, sometimes he tells them I'm his mother, and sometimes I'm his sister.  The good thing is that he knows I'm someone who loves him very much. He's agitated at times - his brow is furrowed, and he looks at me intently when he tells me he doesn't want to be there. He wants to go home.  Sometimes he tells us he's had a good day.  Yesterday Shelley asked him what he had been doing all day, and he pointed at the books that are painted on a wall mural and said he had to straighten all those books and put them on the shelves. The same mural has a cute little dog in a doggie bed lying in front of the fireplace.  Some evenings he tries to get the dog to come see him. Sometimes I smile at him and tell him that I think the pup likes her bed. Sometimes I fight the tears and curse the disease. 

One piece of good news is that he's allowing the aides to help him shower.  The first few times, I had to be in the shower room with them to assure him it was okay for them to help him. He's eating better - nothing like the Billy Jack we all knew who could eat massive quantities of beef, but he's finishing most of his meals.  He does have random times when he just won't eat. I try not to let it worry me, but not eating usually indicates a difficult time is ahead. One night when he wouldn't eat, he spent the next forty-five minutes telling me he wanted to go home and stay with me.  He was intense in his pleading, and I felt so cold-hearted telling him I couldn't take him home. I did finally break away and felt horrible all the way home.  The next night, he was okay for a while, but he started in on the same scenario as the day before. 

One of the nurses spent some time with us the first day we were here, and she described Billy well when she said that he has one foot in reality and the rest of him is in dementia-land. He understands enough that he knows this is not where he wants to be or "should" be, but he does not have the reasoning skills to understand why it needs to happen. Last night I sat with him while he ate his dinner followed by some time watching television with Shelley and Andrew.  As usual, he didn't want me to leave, but he wasn't as intense as the two nights before. 

Last Saturday I picked him up and took him home for a shower and shave.  I took him to church and then we went to dinner with some friends.  He was really great the whole time. It seems that the medication adjustments are helping him to be calmer. Instead of extreme anxiety during the church service, he dozed off.  I'll take dozing over the other. Taking him back to the place was not too bad on Saturday night....he made it clear he didn't want to go, but he agreed to do it.  I picked him up on Sunday as well, and we had a good day, but I think we kept him out too long and he was tired. He was very confused when we took him back to the place, but his new mantra seems to be, "I don't like it, but I'll do it." 

Through it all, Billy is pretty compliant.  The first few nights were difficult, but I check with the night nurse periodically, and he's getting better about going to bed.  Right now I can't imagine going a day without seeing him, but my counselor assures me there will be a time when I may skip a day here and there. I also know that I need to get away once in a while, and I'm hoping I can do that during Spring Break. 

So many people are praying for Billy and for our family. We are grateful to you all for that.  The prayers are felt, and they are answered. God is faithful and wonderful. We've also been blessed with some monetary gifts from folks who love Billy, and I am not only humbled but deeply grateful.  We are trying to get all of his dental work done, and your gifts are so helpful in that area as well as medications and other costs of caregiving. You have blessed us. 

Love and peace to all.