#dementia programming

In my current professional role, my business travel has taken me through 11 states. From Texas to Florida, thru South Carolina, Kentucky and Pennsylvania with a stop in Maryland and several other states in between. I’ve logged thousands of miles as I cross the country providing support to the assisted living communities in my division.  My primary responsibility is to train staff and give them the reinforcement and tools necessary to care for our residents with memory impairment. Training staff is imperative and I relish that role. However, above and beyond everything else, the absolute highlight of my current professional role is the time I spend with the residents. I have the great pleasure and honor of advocating for over 400 seniors with a diagnosis of Alzheimer’s or other dementias.  The territory is vast and I spend more time in some regions than others but, I’m proud to announce to the staff I train, that I know the names and back-stories of handfuls of residents in each of the 24 buildings I support. And, if I can learn about those folks I may not see for several months I encourage staff to know 100 things about every single resident that they serve. Someone once said; if you meet one person with Alzheimer’s disease you’ve met…..one person with Alzheimer’s disease.  Although the disease affects millions and the benchmarks can be similar in many or most; the way those benchmarks appear and manifest vary greatly in each individual.  Because I meet so many, I have a bigger picture reality. However, one of the things I find consistent is that the more we specialize the programs, engagements and activity to meet the specific needs of each individual – the more successful we are and the more successful the memory impaired person is too.  One tried and true method I have is to “keep em’ busy.”  This is especially useful for residents who are still quite mobile and exit-seeking. Asking a person to “help” or asking for their “opinion” is a non-medicinal elixir. Regardless of whether their ‘help’ is exactly perfect or whether their ‘opinion’ makes exact sense, isn’t the issue. The ‘normalcy’ of asking them for their help or opinion, regardless of the outcome is a powerful affirmation to someone whose world is devolving into lost memories and confusion. Many months ago, while in Kentucky, Bob was having a rough day. He’d had a restless night and slept through breakfast. When he emerged from his room past 10am, the staff provided him with his standard request of a bowl of cereal and a glass of juice. One of the caregivers was cleaning up the kitchen space from the breakfast service and Bob ate in silence at his place at the table.  I’ve known Bob for nearly three years and have formed a bond with him that I treasure. I’ve met his daughter, know that he served in the Air Force and was an avid boater and photographer. Bob was very active. On this day, after he was done eating he rose from the table and made the proclamation that it was time for him to “go home.” And, his slight agitation made it quite clear he didn’t mean he was heading back to his room. Without hesitation I responded, “Well, thanks for stopping by” I said as I reached out to shake his hand.  Bob gave a tiny smile and responded while extending his hand, “You’re welcome.”  The caregiver stopped briefly as she took in our exchange. Yep, I was living in the moment with my friend Bob. “Hey,” I continued “before you go, do you have time to help me with something?”  “I don’t know,” Bob responded with a hint of skepticism. “Well, I’ve got to fill the salt and pepper shakers and I could really use your help, if you’ve got some time.”  “Oh, okay” Bob smiled.  We walked back into the kitchen together and Bob took his seat at the head of the table. I gathered up all the half filled salt and pepper shakers and placed them in front of Bob. “Bob, we’re going to fill these shakers with salt and pepper.” “Okay” he responded.  “If you could take the tops off the shakers, I’ll go get the salt and pepper.”  Bob glanced down at the shakers in front of him then back up at me. I quickly pivoted and broke down my instructions once again. I sat down next to Bob and I took the top off one of the salt shakers. “See? These silver caps screw off. Can you unscrew the rest of the caps?”  “Sure,” my friend responded. I turned my back and hustled to the cabinet to retrieve the large canisters of salt and pepper that we would use to re-fill. And, in that moment Bob had just enough time to unload all the salt from a couple of the shakers onto the dining table.  I sat back down next to Bob at the table. At this point, the first caregiver stopped cleaning and paid close attention to my response as another caregiver entered the kitchen area too.  “Hey good job Bob, thanks for emptying out the salt.”  “You’re welcome”  A dual snicker arose from the caregivers in the corner. Sure, Bob created a little mess. But, I’d asked for his help. He was now focused on this task. He wasn’t agitated or seeking a way out the door. So, it mattered not, how he completed the task. The bigger picture is that he was helping me and that was super.  We sat together and funneled the salt and pepper into the appropriate shakers. He helped me screw the caps back on and I placed the shakers back in their center-table positions. Bob even corrected me when I accidentally put two salts together.  Asking for their help is purposeful and valuable to someone with memory impairment. Allowing that ‘help’ to unfold without concern for ‘exactness’ is a huge part of the successful equation. Creating ‘chores’ for folks who need something to do is a trick I use frequently. And, it hasn’t failed me yet. In Virginia, Thelma vacuums while Bill helps empty the garbage. Betty and Kitty love arranging flowers and folding towels. In Texas, Jim helps water and tends to the community garden while several ladies fold the cloth napkins used at meal time. In Kentucky, Richard also empties the garbage and Ginny clears dishes from the tables after each meal. In Tennessee, Mike pushes the wheelchairs of the ladies who need assistance. And Claire is responsible for the clean up after each art project, in Georgia.  Purposeful chores are a valuable engagement for someone with memory impairment. Allowing the ‘help’ to unfold in whatever manner it comes, is a valuable lesson of acceptance to the care provider.

“Hey there Jim, my friend” I smiled as I extended my hand. Jim’s large Texas-sized hand grasped mine as his face lit up in a toothy grin. “Well howdy!” he replied.  Each time Jim greeted me the next phrase was the same. “Woo Wee, you’re a tall one. Nearly as tall as me.” He smiled as he raised his hand in a mock-measure of my height.  This greeting was familiar to me. It was word-for-word the same greeting I’ve shared with Jim for the nearly three years I’ve known him. Although I remember and cherish this greeting – It’s always new to Jim.  Jim has Alzheimer’s disease.  I met both Jim and his wife Annie nearly three years ago. They were living in the Houston area, in a Memory Care unit that is part of my territory as a Divisional Director of Memory Care.  Jim stands nearly 6 foot 3 inches tall and Annie was barely 5 foot. They’d raised two boys, who were now adult men with lives of their own. The very first day I met big Jim, he wasn’t having a good day. He was agitated that his son had left him in this “strange place” and taken his car keys.  Like many others before him, in my world – he wanted to “get outta here.” And, I didn’t blame him. Jim had been in the military, traveled the world, married his teenage sweetheart and been a successful farmer until both he and his wife’s dementia had progressed to the point where a secure environment was necessary. And, that’s when they came into my world.  On that first day we met the staff was a bit stressed out because Jim had been searching for a way out for a couple of days. And, much to their surprise when Jim announced to me that he wanted to “get outta here” I replied, “Well, then let’s get going. I’ll help you get outta here.” There was an audible gasp as I took Jim by the hand and escorted him towards the door.  I looked back over my shoulder at the two frontline staff members staring wide eyed. “Jim and I are getting outta here” I announced with a wink and an encouraging smile. Its okay” I whispered for their ears only. And, with that – Jim and I went out the door into the Texas sun.  Jim was used to being outdoors for much of his day, working the family farm. Jim was a strong free spirit. I related to him instantly. As we walked, he shared his anger about how his son had “dumped” him here and taken his car keys. He was convinced that same son was stealing from him and spending all his money. I nodded my head and showed empathy as I asked him to “tell me more.”  He shared and I listened. It was only when I commented on a colorful Texas plant that his anger subsided and he began telling me about the plant and how it grows. He pulled a seed from one of the bulbs and handed it to me. He told me to take it home and plant it, and explained how to care for it as it grew.  A few minutes later, Jim and I walked back into the Memory Care unit and the staff was amazed at his new outlook. I reminded them (once again) that it’s advisable to give the resident a change of scenery – when they are exhibiting exit-seeking behavior. Just getting them out of doors or into the lobby while changing the subject typically has an immediate impact on their fixation-to-flee. And, be prepared to have to do this same routine a few times a day.  Too often, I overhear staff coaxing the resident away from the door or instructing them to sit down. Or, frequently staff tries to change the subject when the resident is insistent on leaving. I consistently coach and teach staff to stop their task-oriented ways (just for a minute) and give the resident a change of scenery. Give the resident their time and attention. Listen intently. Let the resident share what’s on their mind. Don’t judge. Be a friend.  About a year after I met Jim and his wife Annie, she was admitted to a nearby nursing home. In the first few weeks, Jim was anxious and exit-seeking again. Without Annie his fragile world was even more confusing. The nursing home was only a couple of blocks away and the Dementia unit Director would walk with Jim, so he could visit his dear Annie. The outdoor walk was good for him. Seeing his beloved was even better.  After a couple of months, Annie lost her battle and passed away. Jim and the Director had made a visit, just the day before. One afternoon, I get a phone call from the Director. Jim and Annie’s sons were “at odds” about whether Jim should make the road trip to the funeral in a town over five hours away. The one son insisted that taking Jim by car on the five hour journey followed by three days of funeral logistics was something “Dad should do.”  My heart ached instantly. Jim was my friend and as his advocate I felt it un-wise that he make that trip which had a higher potential of being frightening, confusing and exhausting for him. Neither myself nor the Director had ever met the long-distance son who was unrelenting on these funeral arrangements.  The other son, who lived locally and frequently visited, was the one who didn’t think it wise that Dad make the trip. I advised my Director to explain to the sons what the potential risks and downfalls a trip like this could have on Jim. The long drive could be challenging followed by three days of sleeping in a hotel, a non-secured environment. The sons were told that this could be problematic to them. Unfortunately, after a long wait, my Director called me back and shared with me that the battle was over – Jim would make the trip.  Those were three very long days. I even sent out an e-mail to all my friends, asking for their prayers-of-support for my friend Jim.  Several months later, I returned to that Houston community and was grateful of the greeting I received. “Well howdy! Woo Wee, you’re a tall one. Nearly as tall as me.” Jim grinned, as he reached out that familiar Texas sized hand. We took a walk outside and he showed me the amazing garden he and the Director had planted. My heart swelled as he pointed out the okra, green beans, tomatoes and cucumbers. He pulled a few tomatoes off the vine and suggested we bring them indoors so they could “ripen up on the window sill.” I smiled, it was good to see my friend Jim.