Saturday, August 25, 2012

August Brings Aggression

It's hard to believe that we are so far into August! Teachers returned to school this past Monday, we had our Meet the Teacher Event last night with what seemed like record crowds, and our students show up on Monday. Seems like yesterday that we were closing out last year. It's also hard to believe the difference in Billy from last August to now. I know that last August it was getting more difficult to care for Billy. Our mornings began at 4:30, so we could leave the house at 6:00a.m. to meet Terry, the caregiver who met us half way to the Rose Cottage each morning. When I think through all of the blessings we've had throughout Billy's disease, Terry is a big one. She would meet us at a QuickTrip parking lot, take Billy for the day, and she stayed with him until I picked him up around 6:00p.m. That was a long day for both of them, I'm sure, and I am thankful for the lovely people who cared for Billy every day during the time he stayed at Rose Cottage. 

It has been nearly seven months since Billy came to live at Lexington Place. The first few weeks were so difficult, and I'm sure I cried every day when I left. As AD takes over Billy's brain, he understands less, and for several months, he was okay with us visiting and then leaving. Recently, he's gone back to wanting to leave with Shelley or me when we leave. It still breaks my heart when I tell him he has to stay, and he looks so disappointed. Last Saturday evening, he didn't do that, and it was easier, but I have to say it's still painful.  I rock along pretty well feeling in control of my emotions, and then I get on overload and I lose that control. I'm sure that stress plays a role in my emotions, too, but lately I really miss having Billy to talk to about all the things going on. He's been my husband for 31 years, and he was my best friend for five years before that. I've shared everything with him for 36 years, and I miss having my husband with me. 

If we could still share our thoughts and feelings, we would share in our complete happiness that Shelley has her first teaching job after working so hard to finish her degree.  He would enjoy watching sports with our son-in-law and our brother-in-law. He loved to joke around with Shawn, and he still wants to do that...he just doesn't know what to say. I would also talk to him about my parents, and their health issues. It's funny that Billy asks my how my dad is about once a week. I don't know if he senses something, or if it's completely random.  My dad is having health issues, and ironically, he has some of the same issues Billy has had with Alzheimer's.  Dad's neurologist feels that he has Lewy Body Disease which is like having Alzheimer's mixed with Parkinson's. I haven't written about Dad in many months because he got upset with me for writing about his Thanksgiving episode, but I have to share that because it's a huge part of our lives right now. My mom's cancer has become active again, and this past week she started chemo - again. This time, the doctors plan to shrink the tumor significantly and then remove it surgically. Mom's health is our first priority right now, and Dad's health is up there also. I find myself wanting to "fix" things, and then I'm quickly reminded that I can't. I can't make all their decisions and shouldn't. Your prayers are needed and appreciated. 

I got a call from Lexington Place this afternoon, and my heart always sinks a bit when I see that name on my ringing phone. They don't call to tell me how great he's been. I've mentioned before that the weekends are a challenge for Billy. He doesn't care for the weekend nurse, but he's been aggressive with the weekday nurses also lately. For several weeks now, the medical staff has been working on getting his meds to help him calm down, and at times he seems better, but he's had some violent episodes lately. That is not Billy's nature, but when the brain deteriorates, and he's faced with strong emotions, he goes into fight or flight mode - lately it's been fight. From what I could understand today, Billy got very upset when the nurse and two aides tried to change him. He doesn't do well with that many people doing that. I'm sure he feels like he's being ambushed.  I plan to talk with the nurse tomorrow in person and try to understand exactly what happened, but Billy ended up with a busted nose and a swollen cheek. He looks like he was in a bar fight. When I got there to pick him up for our usual Saturday evening outing, he had not been shaved and he had blood on his shirt, but he was calm. [His pants have been falling off of him (literally), so I took some smaller clothes for him. When Billy entered LP in January, he could wear waist sizes 38 and 40.  He now wears waist size 36, and I really don't remember him wearing that size since we married.  I'm not sure how much weight he's lost total, and he's certainly not underweight, but I hope he stabilizes soon.]  One of the aides and I got him shaved and cleaned up, and he did very well while we were out and about.  After we shaved him this evening, he looked in the mirror, saw his face, and said, "What happened here?!" He had no clue.   

I don't know the answer to making it better. I hate the thought of making him zombie-like to calm him down, and I hate that he's getting physically aggressive and coming out the loser.  He apologizes after he calms down, so it seems that he knows he did something wrong, but he also has Alzheimer's! 

I'm posting a series of pictures here that my sister took at Rosa's this evening.  I want to hang on to any part of Billy that I have, and when I look at these pictures, his eyes make me sad. He does still laugh and smile some, but we rarely capture it in a picture. 
I love that Billy still kisses me as often as he can! 
He thinks he's smiling in this picture. You can see how swollen his face is.
I have no idea what's going on with my toothy smile! It looks fake. 

We couldn't get him to look up because he was eating Connor's frosty!

Finally! A smile!

And by picture number 5, he was getting tired of it all. 

My heart has been heavy lately. My brain has known all along that Billy would get worse, and I tried to prepare myself, but actually living it is hard. I had a happy moment tonight when he sang at church.  I've not heard him sing in a long time, and for those who haven't known Billy for as long as others, Billy has a beautiful tenor voice. He sang with the praise team for years in our church in Midland, he sang in many weddings, and for many funerals. We sang Blessed Assurance at church this evening, and that is a hymn he has stored in that remaining long term memory. We typically sing contemporary songs which I love, but Billy has always liked the old hymns, and he can harmonize well.  I can hardly stand to think of him not being with me, but it will be a joyous time when Billy sings praises in Heaven. 

Wednesday, August 1, 2012

Sometimes I wait too long to write, and I end up with more to say than should be written in one post. I also struggle with brevity - I like words, and I love to use them. My apologies ahead of time for what should probably be two posts. The summer has afforded me some time to see friends that I don't see often, and I am so thankful for that. We lived in west Texas for twenty years before coming back to what we consider home - Fort Worth, Texas. Leaving the dry flat landscape of west Texas was not too difficult; leaving the friends we love like family was painful. I'm thankful for all our ways of communicating - cell phones, texts, Facebook, etc, but nothing replaces seeing, talking, and hugging those dear friends. Because it's a six hour trip one way, we don't have that luxury very often. 

Billy in the main dining room.
Our dear friends, Billy and Kathy Futrell...yes, we share names.
We could just say Billy and Kathy squared!

Billy Wayne, Billy Jack, and Kathy!
I can't forget Boo, their cute little Maltipoo! 
The last time our Midland friends saw Billy was March 2011, and I know how difficult it is to visit Billy now, and see him as the disease takes its toll. For a long time, Billy looked perfectly normal physically, and he followed most social norms, so unless  you spent much time with him, you had no idea of his Alzheimer's. The physical aspects of the disease are appearing with Billy - his eyes have lost their luster, he moves very slowly, and he struggles to communicate. He does talk, but he doesn't follow the same topic, and we usually have no idea what he has said. He's also started the quick repetition of a syllable or word like so many of the AD patients do. I remember his mom making alliterations with most of her sentences. She used to tell her kids they looked "clickety clack." From a scientific standpoint, I would like to know why those with this disease have some similar patterns of speech. I learned that when patients with dementia begin cursing after never doing that, it usually means the front right temporal lobe is damaged; that is where our forbidden words are stored. The brain is a fascinating organ created by God, and Alzheimer's is an evil force. 

The unit has a new resident who has changed the dynamics of the group, and I'm not sure if it's this man's influence or just that Billy is changing, but Billy has gone through some noticeable changes the last few weeks. He's combative when the staff tries to change him, and he's strong. I've helped with the process before, and I know he's confused about what is going on. He doesn't want people "messing" with him, and pushes them away. They've learned it's best to wait for him to calm down - then try again. Sometimes it takes half an hour for him to calm down, and I hate that he is wet or soiled during that time, but I also know it's best to wait for him to calm down. The last few weeks, he's been upset when we start to leave. He wants to go with us, and when we say no, he wants to know when we are returning. I nearly always say I'm coming back the next day, and he nearly always says, "That's a long time." He follows me to the door, and several times, he's tried to leave, and I have to hold the door so he won't get out. The last few evenings, though, he's been better about not getting upset. I am thankful for small things like that. 

I'm also thankful for my daughter and her strength through these rough patches. Our hearts are broken over Billy's disease, but we rely on God's bolstering, each other, family and friends, and so many who offer up prayers on our behalf. I'm amazed at Shelley's kindness and strength when she visits and cares for her dad. She's had to do some really tough things lately - like help change her dad's adult diaper. I know that all of us would do whatever we need to do for our parents who certainly did for us, but when your dad is so young, it really stinks. Shelley takes it in stride, tries to make him as comfortable as she can, and never looks back. Billy doesn't want his daughter to see him like that, so she takes his hands and holds them tight, looking him in the eye and telling him to look at her. That way the staff can do what they need to, and Shelley keeps him from fighting them and maintains his dignity. I've helped with the process also, and it is not an easy task. I'm thankful and proud of her ability to do that. She often feeds him his meals, and that's another labor of love. 

I mentioned the new person in the unit...he's a handful - constantly pacing and wanting OUT of the unit. He asks everyone nearby to help him get out. He's getting slightly better because I saw him sitting during a meal tonight. Last week, he ate chicken salad with his hands while standing over me - that was fun. I dodged the plops of chicken salad, and only ended up with some fruit cocktail on me. I'm amazed that his wife was able to keep him home for as long as she did. She said she would block the door with her body, so he couldn't get out of the house, but he got away one day. The police found him in a neighbor's house, and that helped her realize she had to get some help. She certainly has more tenacity than I do. 

Something really sweet has happened with the presence of the new man. I've mentioned walking Betty before - she's a tall thin woman probably in her 60s with beautiful thick silver hair. She walks up and down the hall, shows little emotion - happy or otherwise, and she rarely utters a sound. That has changed with the arrival of the new man. They are smitten with each other. He is gentle and tender with her, holds her hand, asks her how she is feeling, and she smiles. For months, I didn't know she was missing her front two teeth because she rarely opened her mouth. Shelley said they were walking down the hall holding hands yesterday, and Betty was glowing. I notice that when the new man's family visits, Betty sits in the TV room with them. It's wonderful to see her so happy. I know her son visits sporadically, but I don't know if she has any other family. 

It's very sweet to see, and I am happy they have some smiles during the day. Should Billy decide to love on another lady in the unit, someone will need to remind me that I thought it was sweet for Betty and the new man. I may not be as keen on Billy making another lady smile! Actually, Billy is sweet to all of the residents most of the time. The little ladies who can talk tell me what a sweet man he is. One of the ladies tonight brought him a half roll of toilet paper. He took it graciously, unrolled a few feet, and handed it to me. I have no idea why she brought it to him, why he took it, nor why he handed it to me; but the whole thing seemed normal to them. I'm also amazed at how the residents have conversations with each other. One will say something that really makes no sense, and another will respond with a comment that has nothing to do with what was said. They have the cadence of conversation among themselves with no real meaning, but it satisfies a need they have to interact. Very interesting to watch. 

Enough of my rambling and observations for now. I have much on my mind, and I appreciate an opportunity to share. My next post will come soon - ideas are percolating! Peace and love to all. Our God is an awesome God.