There are many times in life that it’s important to stop, smell the roses and be thankful for the time we have together. Unfortunately, many of us probably don’t do that as often as we should. Dad’s 87th birthday recently passed. For many years, we have typically gone out for dinner. This year was no exception and he picked a local Irish pub for his celebratory meal. When I picked him up at the Home he was totally on his game. He was bright, cheerful and expecting my arrival (I had called him earlier in the day about our plans).
When we arrived at the restaurant he asked that I read the entire menu. After deliberating several choices, he selected the ¼ pound hamburger with French fries. Cooked to perfection, he devoured the burger, fries and a ginger ale. With some gentle persuading (it usually doesn’t take much), he raised his eyebrows and delightfully ordered the homemade bread pudding. If there is anything that LBD hasn’t affected, it’s his appetite for good food! The waitress kindly served the pudding with 2 forks. Having just eaten an entire plate of bangers and mash, I felt guilty about eating dessert. Then I thought to myself, “We may not have a birthday next year, this could be it.” With that thought it mind, both of us enjoyed splitting the yummy pudding.
We rolled out of the pub that evening like 2 pigs pleasantly stuffed and satisfied. In looking back on all the years we have spent time together celebrating birthdays or otherwise, I never thought about it being the last time we might do something together. The days are so hit or miss with LBD. You just never know how one day will be to the next. I guess that’s why we should make the extra effort with whatever time we do have left. It was a great birthday!
Shortly before the holidays I was directed to speak with the case manager at the Home where Dad has been living for the past 18-months. Apparently, the State had recently been in for a routine site survey and randomly selected several residents to audit – including Dad. Unfortunately as luck would have it, it was not one of Dad’s finer days. As a result of what they learned and observed on that day, the surveyor(s) deemed him “inappropriate” to continue living there. When I inquired about what they based their conclusion on, I was directed to some progress notes that had been written by one of the staff members on a recent early morning. I read, “5am – John continues to be agitated, walking around hallways very upset. Exhibited challenging behavior with staff at prior evening meal time, distressed and making (threatening) gestures with a table fork.” “5:30am – Finally settled down and back in bed.” The case manager went on to remind me that we had been struggling to manage his behavioral changes since last summer. Regardless of several medication therapy adjustments, it seemed we were at a dead end. I replied; “Ok, so where do we go from here? What is the next step? What are our options?” The best she could offer was; “We really don’t know. You could try calling other area facilities to see what types of programs and services they have.” Hmm I thought to myself; “Dad’s already in a facility specifically designed to support memory care residents. He doesn’t seem quite ready for nursing home care yet (still independently ambulates, feeds himself etc.)” So I wondered, “How would other similar facilities manage him differently?” This would require some research.
The following day I called the neurologist to get her perspective and advisement on the situation. After we talked about the advancement of LBD and where Dad is in his progression, she suggested I speak with her case manager for more information about placement recommendations. That discussion led to another long list of memory care and skilled nursing facilities that we were already aware of, including some out of State. As an only child, how could I possibly move him out of State while remaining close enough to easily visit and keep tabs on him? That to me was simply not an option, so I was back to square one.
Several days later I had a conversation with one of the Home nurses about Dad’s medications. She alerted me to the fact that Dad had been refusing his morning-time medications. Seems that his night-time episodes were leaving him so out of sorts, he wouldn’t take his medications at breakfast. However, he did take his evening medication doses with a high degree of regularity. That’s when the light bulb came on. Maybe the medication adjustments weren’t effective because he hadn’t been taking them? I also remembered the neurologist telling me that a stronger strength of the medication he currently takes to improve his mental function had recently become commercially available. I thought to myself; “What if we changed the administration time of his behavioral medications to evenings and increased the strength of the medication he takes for his memory? I immediately called the neurologist again.
Within a week of making the modifications to Dad’s medication regimen, we started to see a big improvement in his behavior and cognitive function. He is able to better initiate and hold improved conversations, seems to be less agitated and his nightly events that had become so frequent have nearly disappeared. Wow, what a big difference little changes can make! Now I’ve started to keep a log of Dad’s cognitive function through my own observations during our time together, as well as staff feedback from the Home. For the time being, I’d say we have successfully avoided (another) “D-Day”…