Distractions from a scary world. . .

Today's visit to Bill was better in that I knew what to expect and I'm learning how use distractions to deal with it.

Bill's in a new phase of this disease where he can express himself for a short bit; then he starts cycling through with the same phrase, over and over again. "Help me, help me, oh please help me."

After making sure he was OK, I decided to try distracting him. I asked him if he would like to go on a vacation. He smiled his big "cheesy" smile and his eyes lit up like a child's at Christmas. So, we began to talk about our vacation. We're going to go to the Redwoods in California and take many magnificent photos. "No, I won't forget to pack up your cameras for the trip," I assure him when he asks. 

We'll walk arm-in-arm straight through the middle of one of those gigantic Redwood trees just like we've seen in pictures! 

Then, we start talking about flying to Hawaii to take that honeymoon we never took. We talk about the mountains we'll have to cross to get there, the plane ride over the ocean, and the fact that his mother graduated college in Hawaii. 

Our little "fairy tale" vacation kept him occupied for quite a while; then it was back to "help me, help me, please help me." But I was happy. Bill had a few moments of pleasure, even if it wasn't real. But then, what is real to Bill right now?

After our visit, I had a meeting with his medical team. It was a productive meeting. They answered all my questions; we discussed hospice, palliative care, and a new plan for his pain treatment. They are now adding regular pain meds throughout the day and before he goes to bed. At this time, he does not need hospice or palliative care. He is still eating, hasn't lost any weight, and has no major health issues. The VA does everything that hospice or palliative care would do at this stage of Bill's illness. My main goal was to make Bill more comfortable, so I feel that we accomplished that.

The hardest part about the meeting was when I asked them about the repetitive "help me help me." They assured me that this behavior is one of those things that happens to some Alzheimer's patients as they get closer to the end. Some scream, some whistle, some repeat phrases. And, as one of the nurses reminded me, "It's only going to get worse." My mind heard that, but pushed it aside.

I came home and crashed on my bed thinking about how Bill's face lit up when talking about the vacation he will never get. Then, I remembered what the nurse said - that it was only going to get worse. "How will I get through this?"

I reached out to my two friends, Bev and Carol. They let me cry til I had no more tears to cry. Then, they distracted me with a crazy personality test where I "discovered" I was bossy, judgmental, and an extrovert. It made me laugh and my eyes lit up, just like Bill's.

Just as my friends distracted me from the scary thought of watching Bill as he deteriorates, I must distract Bill from the very scary world he's living in. 

On my next visit, perhaps we'll go on a cruise to Alaska or take a road trip to Montana. We've never been there. . .