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. 


  1. Reading your blog makes me grateful for the time that I had with my husband before his Alzheimer's began. I am of the past generation and you are the age of my children. I have been caring for my husband for almost 9 years. I helped care for his parents and my own mother with the disease for several years before then, so I have been family caregiving for almost 30 years, on and off. Believe I understand your pain and loss. None of this that goes through this cannot.
    I too write to share my experience and as therapy. If you are interested in my story my blog is at
    I hope as you probably do too, that some how they will find a cure before the disease affects our children.
    I appreciate your positive attitude and give you my best.
    Mable Ann Romick

    1. Mabel Ann,
      Thank you so much for writing. Somehow knowing that others survive the journey helps, but no one goes through it unscathed. You have been a caregiver for qute some time....God has a put a lot of trust in you. I look forward to reading your blog. Thanks again.

  2. Kathy thanks for sharing your blog. I am still struggling with everything, and mom just seems to get more confused. the doctor says she has a urinary tract infection that could be the cause for the sudden change in her behavior. They are treating her and say her confusion could clear up with the infection. I know it is probably just false hope but, it is some hope that she might get better for a little while. I guess that is the part I struggle with the most.. the inevietable. Right now I am increibly sad and angry that mom has to go through this. I don't see the blessing in it? I know there are people and relationships with care givers that I am grateful for, but it doesn't change what mom is going to have to suffer through for who knows how long. It hurts so much and I dont want my mom to have to go through that. I do look to God for strength but am struggling with Him as well. I admire your strength and the fact that you have you parents to help also.
    I guess teaching helps me keep my sanity, but sometimes that can be a source of stress too. Well thanks for letting me rant for a while. I will pray for you as you go through it all. I know it is the only way. Lynn

    1. It amazes me that UTIs can have such a negative impact on patients with dementia. The weekend nurse told me they are checking for a UTI with Billy, but every time they check, he doesn't have one. I often hope he does because that is treatable. When the disease gets worse, it's a long road on adjusting meds. I hate Alzheimer's! I hated seeing what it did to my mother in law, her sister, and now to Billy. His grandmother and uncle had it also. I can relate to the anger and sadness. I fight the sadness, and today was better. I notice when I'm too tired, and I go see him, I'm too sad. I've said for as long as Billy has struggled with this that I hope he has a fatal heart attack before he gets worse, but I guess we don't get to choose.

      My faith keeps me from being so angry, I guess. I don't blame God, but I do wonder why we are not blessed with a cure yet. I appreciate your prayers, and I pray for you and your mom also. I've wondered how your meeting went with the staff at the facility. Let me know when you have the time. Hope your first week goes well, Lynn. Take care.

    2. Thanks for the reply, it does help to know that someone can empathize with you. I had those same feelings, wishing mom could just die quickly, but I felt so guilty about having such thoughts. It doesn't seem like mom enjoys much of anything anymore, and she use to be so strong and full of energy. Seems so unfair for a woman who sacraficed her whole life for others.If she can't enjoy her remaining life on earth,she shouldn't have to suffer. I know I haven't had to deal with as much as some, I can't imagine being responsible for the care of more than one person with Alzheimers.
      I don't know how to prepare or protect myself for what lies ahead. I don't know how to balance my life between my immediate family, work, and mom. I worry about my own health, and how all this will affect me and my family.Hopefully it will all work itself out. Thanks again for listening, Lynn

  3. Oh Kathy........ my heart cries with and for you. Reading your blog is like remembering David and my story with this dreadful disease.
    All I can say is, "one day at a time".......
    My thoughts and prayers are with you all!!!

    1. So true, Delores. One day at a time. Today didn't see quite as bad to me. I like to think he's better, but when I said something to the evening nurse about it, he said he does not see improvement. He's still struggling quite a bit and acting out frequently. Thank you for praying me us, Delores. I think and pray for you and David.

  4. Kathy - I can appreciate everything you wrote about, especially getting THAT call. When I look at Billy, I see the "Azlhemer's face" - the person we love is there, but they are so very far away. I continue to pray for you and wish you strength as you continue on this journey.

  5. Hello, I came over from Doloras's heart goes out to you..You have so much on your plate right now..I really can't imagine. Wishing you hope and peace...