Thursday, April 19, 2012

More Good Days than Bad

Every day is the same, and every day is different. Billy thrives on his routine, and the nursing home keeps a specific schedule for all of the residents particularly those in the Memory Unit. But Billy has a disease of the brain, and it changes daily. You never know what might happen in a day with any of the residents, and that triggers reactions from others. Billy has adjusted well, and he only takes Ativan when needed.  That has been the goal since her entered the nursing home....he has other meds that regulate his behavior (if it can be regulated), and when his anxiety gets beyond comfortable for him or his caretakers, he is given Ativan. He usually takes it on the weekend because he is not fond of the weekend nurse. I'm not certain why he feels that way, but I can't change his mind. Another factor that is unpredictable is the time that Shelley, Andrew, or I will arrive to see him. At least one of us and many times all three of us sit with him during dinner in the evening. He begins looking for us around 3:30, and we never arrive before 4:45, and it's usually past 5:00. 

I am pleased that the caretakers have changed his bathing schedule to weekday mornings. He is calmer in the morning, and he likes the staff during the week. He is resistant to shaving and help cleaning on the weekends. I have no problem with him not begin shaved, but when he needs to be cleaned and his underwear changed, I can't always be there. It's definitely easier on the weekends for me to get there, but even then it takes me 30 minutes to arrive. I'm praying he will grow accustomed to the weekend group, but I'm not certain how I can expedite that. I take him with me on Saturday afternoons and evenings, and I take him back around 8:00pm. By that time, he's calm and ready to prepare for bed.

In late March, Shelley and I attended the annual Alzheimer's Symposium for North Texas. It's held each March in Fort Worth, and it is excellent. The keynote speakers are always well versed in Alzheimer's Disease, and this year was no exception. We heard Heather McKay who is dementia care specialist and occupational therapist by trade. She teaches courses at the University of North Carolina, and she has her own company that assists caregivers tremendously. Most doctors speak of Alzheimer's Disease in three major stages with the first being Mild, then Moderate, and finally Severe. Within those three, they may break them down also, and 
we are told that Billy is in the late Moderate stage. 

Heather McKay shared with us the Levels of Cognitive Decline used by occupational therapists, and it's much more specific.  It has five levels with Level 5 equating to Mild. When Shelley and I read through the levels, we could 
immediately see that Billy falls into Level 3. 

Level 3 – Middle Loss - See It – Touch It – Take It – Taste It – Hunting & Gathering
Touches and handles almost anything that is visible.
Does not recognize other’s ownership – takes things, invades space, gets ‘too close’
Can still walk around and go places – ‘gets into things’.
Language is poor and comprehension very limited - does take turns.
Responds to tone of voice, body language and facial expression.
Loses the ability to use tools and utensils during this level.
Does things because they feel good, look good, taste good – refuses if they don’t.
Stops doing when it isn’t interesting anymore.
Can often imitate you some – But not always aware of you as a person

We also began identifying where most of the other residents were. In the unit, they go down to Level 2, but as they become bed bound, they are moved. Billy touches everything, and most of the residents will move from room to room in the unit and pick up things from others' rooms. We label everything! He is beginning to have issues with his utensils, and he loses interest quickly. He does know his family, and he may not call us by the correct relation (sometimes he says I'm his mom), but he knows I'm family. 

I'm posting a video of Billy, and I will post more as we go along. I focused on his behaviors while he waits for his dinner in the dining room. The staff starts taking the residents to the main dining room around 4:30, which creates a really long wait for most of them because dinner is served around 5:30. Billy doesn't go until one of us arrives, so if we are later than 5:15, he eats in the unit. When we get into the dining room, Billy begins his ritual at the table. I call it the Dance of the Silverware.

I had this post written early in the week, then I had to learn how to edit my video which took me hours (literally).  I posted it on my blog earlier tonight,and somehow I erased my entire post.  Very irritating!  Even though I edited a lot of the video out, it may still be too long. I'll get the hang of it soon. I've only been a Mac user since August, and I have MUCH to learn. Now, I'm learning how to use iMovie, and it's awesome! 

I look forward to posting more video of Billy and hopefully capturing some of his funnies. He is pretty funny at times. Pardon my Texas twang in the beginning and notice how Billy stirs his Dr. Pepper - his drink of choice. He often adds sugar or sweetener to his DP unless we stop him. At the end 
of the video you will see an interesting use of his utensils!

As always, thank you for reading, for caring, and for praying. Peace and love to all.  


  1. Dear Kathy, I have heard about your husband's early onset Alzheimer's for some time but today Vivian R. gave me the link to your blog. I am so impressed that you are doing this. I have been a primary caregiver for my 89 year old mother for the past three years. She is very late stage Alzheimer's right now and could die at any time. She is a very strong woman and so her body and mind are in conflict about letting go. Anyway, I want to say that you are doing a wonderful thing with this blog. Take care and you are in my prayers. Sincerely, Patricia Stevens (former MISD Principal, West Early Childhood Center)

    1. Patricia, it is great to hear from you. Thank you for reading my blog and commenting. Writing has been helpful in spreading the word about early onset AD, and it has allowed me to express my feelings in a healthy way. All that in addition to keeping friends and family updated. The power of writing!

      I'm sorry to hear that your mom is suffering from this dreadful disease. Billy lost his mom, grandmother, aunt, and uncle to AD, but they were not early onset. We are thankful that his sisters and cousins have not shown signs of the disease at this point. Strangely Billy is the youngest sibling. His mom was so healthy physically, that she lived to 81 with the disease and was in late stage for several years. I pray that does not happen to Billy, but I know that I don't get to choose. Say hello to the old crew in MISD! Keep praying for our loved ones and for a cure! Kathy

  2. Thanks for posting the video Kathy! I love your Texas drawl! :) Hubs often plays with his silverware, but has not acquired the dance yet. :) I always get so much from reading your blog....Oh this dreaded disease is tough!
    Thanks friend!

    1. Sandy, you are so right....every step of this disease is tough. Billy is becoming more distant as the disease progresses. He has always been a talker, and even though he can talk, he struggles to express himself and often has that far away look. He sees but he doesn't. It's amazing how much you can miss someone who is sitting right there beside you.