They Don't Remember

Heartwarming stories of friendship from my vantage point as a professional Care Provider.

[theydontremember]

Noreen

I met Noreen in January of 2002. I had just begun my role as an activity assistant in a skilled nursing home in Wisconsin.

A mere four months earlier I was in my New York apartment on the morning of September 11th, 2001. The world changed forever that day.  My professional career path changed forever that day as well.

By then, I’d been in New York just over five years and had been working as a radio sports reporter and producer. My lifestyle was fast and filled with amazing moments of pro-athlete interviews, fine dining and New-York City stories.

However, by January 2002 my days were filled with calling Bingo, pushing wheelchairs and learning about Alzheimer’s disease.

I was walking down the long hallway that led to the small office area I shared with the other activity assistant. Noreen stood in the doorway of her room. Her smile was large, her posture slightly hunched, her winter white cardigan sweater hung loosely on her small frame. “Good morning dear,” she chirped.

“Hey there Noreen” I replied. “How’d you sleep?”

“Oh, just fine honey.”

It didn’t take me long to learn that Noreen was ‘everyone’s favorite’. And, it was easy to see why. She knew a little information about everyone at the nursing home. Both staff and residents alike, made it into Noreen’s mental rolodex. She was quick witted and sassy. A tough lady, with rugged skin and a head of thick white hair, always impeccably in place.

She shared a room with another woman. Their worldly possessions separated by a thin white curtain. Noreen’s mementos told her nursing home life story. She had a bowl filled with candy she’d won playing bingo on the dresser and a handmade cross from art-class on the nightstand next to some costume jewelry. She had a blanket on her single bed that looked 100 years old. Photo albums with cracked pages and a few stuffed animals, littered the small space.

Noreen was a social butterfly and a fixture in many activities I led. She was good at trivia and loved current events. By the time I met her, she’d been living in the nursing home for several years.  

Although I was new to the industry, I quickly bonded with Noreen.  My reporting skills came in handy as I asked her questions about her life and she shared vivid details. I was fascinated by her stories.

Often, I would visit Noreen’s room and chat with her like giddy girlfriends. She offered me candy from her bingo-bowl and I’d brush her hair as she would tell me tales from the travels she took with her husband.

In those early days, I wasn’t always welcomed by other professionals in the healthcare industry. I was shunned and dismissed by those who weren’t impressed with my radio industry credentials. I didn’t have any advanced degrees in geriatrics or fancy initials behind my name. And, therefore many times industry insiders showed little respect for my contributions.

Amazingly, none of that seemed to matter to Noreen. She had no remaining family and I enjoyed spending time with her. Luckily for me, Noreen and the other residents I served weren’t concerned with the credentials behind my name. Instead, we bonded over stories, sharing life experiences and friendship.

I asked Noreen questions about her life and she willingly shared the details as we both travelled back in time together. Noreen was more than a woman in a nursing home to me, she became a trusted confidant. In fact, my friendship with Noreen was the first of many many more to come over the next decade of my professional journey.

Each month at the nursing home, I hosted a ‘breakfast bunch’ in the activity room for a group of residents. On this day, Noreen was on the guest list however, the bacon and eggs were being served to the others and she still hadn’t arrived. It wasn’t like Noreen to miss one of my activities and just as I prepared to go check on her, she appeared in the doorway of the activity room.

Her smile was broad and slightly forced that day. She wore a navy blue cardigan sweater. She apologized for being late. I touched her shoulder, “Are you alright Noreen?”

“Well, I’m not feeling that great today honey, but I knew I had to be here this morning for you,” she smiled as her blue eyes sparkled.

My heart swelled as I pulled out a chair for Noreen to sit and join the others. She was a special friend, regardless of the multiple decades of difference in our age. I watched Noreen that morning and later would remember that she appeared to be a bit ‘off-her-game.’ Her sassy wit was a bit slow that day and her movements appeared labored.

Just over a week later, Noreen was called to eternal life. The ‘breakfast bunch’ was the last activity she participated in. Back in 2002, Noreen was the first friend I lost. Unfortunately, she hasn’t been the last.

I have spent the last years wisely, getting more credentials and advanced education in Alzheimer’s, dementia and activity programming. However, the most important lesson I’ve learned didn’t come in the classroom. The first and most valuable lesson I learned came directly from Noreen so many years ago.

Friendship, communication and understanding are amazingly healing in a non-medicinal way. Noreen accepted me. And I accepted her. We had a mutual respect for one another that transcended age and living arrangement.

Unwittingly, Noreen taught me many things that have helped to shape my professional career. Those lessons are truly an Advanced Degree.

[theydontremember]

The Walking Club

“You may want to wear a jacket, it’s pretty chilly outside Dorothy,” I coaxed as I stood in the doorway of her apartment.

She reached for the furry pink one. “How about this?” she asked.

“I love that coat,” I cooed.

Dorothy buttoned up her furry pink coat, locked the door to her apartment and we walked towards the elevator. It was nearly 1:30pm on Friday December 8th. The Walking Club had been meeting every Monday, Wednesday and Friday at 1:30 for over a year. The others were waiting for us by the front door and greeted us as we approached.

“Okay ladies, here we go!” I cheered.

The sky was Carolina Blue that day and the sun shone brightly yet there was a crisp briskness to the air.

Millie, Ila, Dorothy, Helen, Joyce and I were the core walkers in the Walking Club. Occasionally others would join us but I could always count on my steady group of five. I looked forward to our walks. And, on this day – I was nearly bursting to tell them my secret. We were barely 50 yards into our walk that day when I blurted it out; “My boyfriend Dan asked me to marry him last night! We are engaged!”

The ladies squealed simultaneously.

Ila was the first to recover; “well let’s see the ring,” she said.

Millie, Ila, Dorothy, Helen and Joyce were all resident’s in the secured memory care building where I was the Director of Life Enrichment. However, if I learned anything while holding that position, it was that the resident’s I served enriched my life far more than I did theirs.

Our weekly walks served so many purposes. It was a fantastic boost of fresh air that we all enjoyed. Sure, the exercise was the main objective but the conversations were nearly as fascinating. Each of the ladies was so unique and although each of them were in varying stages of their cognitive decline, the Walking Club was a wonderful outlet.

Ila, a silver-haired beauty was always impeccably dressed as she frequently shared her recollections of flying airplanes. She captivated me with her stories of adventure of being the youngest gal in her small-town of Ohio to fly solo at the tender age of 16.

Millie was quick witted with a charming personality. She too, shared frequent musings of her days as an executive assistant at a research laboratory.

Helen was the quiet one. Always listening and briskly following a step or two behind the group. She carried a notebook and consistently jotted down ‘notes’ as we walked. None of the other ladies seemed to notice her unusual quirk or if they did, they never commented. I never asked her what she wrote I only knew it was very important for her peace of mind to document her detailed observations.

Dorothy was thin and wiry and would often cajole the group to walk faster.

Joyce was the youngest of the bunch. She was quick to laugh and had the loveliest southern drawl.

Some days we walked around the small lake that was nestled amongst the trees on the 36 acres of land the memory care building rested on. We would stand on the foot bridge and admire the myriad of fish and turtles swimming in the water below. Other days we would walk to the outdoor pool area at the main building on campus and take a break on the patio furniture and sip lemonade.

On chilly days, we’d head directly to the main building and I’d serve the others coffee while Ila would take her seat at the baby-grand piano in the lobby and play beautiful music, from memory. She needed no sheet music and often took requests and would blush with pride as passers-by would stop, listen and applaud her talent.

Indeed, our Walking Club excursions were typically the highpoint of my work week. I frequently shared stories of my life, giving them updates about my family, friends and details from the ‘outside’ world. Joyce especially loved to ask me questions about what was happening in the news. I spared them the sordid details from the news-of-the-day but, would certainly share information that they would understand and appreciate. This often led to deeper conversations about morality and how “life was in their day.” I found their insights and comments to be remarkably charming.

That’s why, when Dan proposed to me, unexpectedly on that Thursday evening, I was completely thrilled that I’d be able to share my  news with my special circle of gal pals the next day during our Friday stroll.

We stopped in our tracks as the ladies surrounded me and I extended my left hand for them to see the ring. It was a genuine piece of custom-made craftsmanship and each of them gushed over me, like any true gal-pal would.

Joyce was the first to comment on my “glowing smile” as she proceeded to hug me tightly. Helen’s pen was moving feverishly over her paper while Dorothy asked me to tell them more about Dan.

We began walking again and I shared my story with them. How I’d met this southern gentleman and how he’d courted me. Ila and Joyce each shared their own stories of meeting their husbands and we all giggled like school girls as we discussed wedding details.

From that day forward, even though all five ladies had a true diagnosis of cognitive impairment, it was remarkable how many times they would ask me about Dan or ask for more details about the approaching wedding day. It was almost as if my news and happiness had triggered something inside their slowly fading memory banks because somehow they found a way to retain my engagement news. Their blissfulness lasted the whole five months until my actual wedding day.

The Walking Club had begun as an exercise activity however somewhere along our journey turned into a circle of friendship I’ll cherish forever.

[theydontremember]

Keep em' Busy

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.

[theydontremember]

Marie

Using a large blue erasable marker I wrote A-P-P-L-E on the giant white board. I smiled down at Marie. “Marie, can you see that?” “Yea” she responded. “Read it”  Marie looked at the board looked up at the ceiling lights then back at the board. “Apple” she chirped.  “Yes! That’s fantastic” I squealed. “You are amazing” I said while I wiped away the word and replaced it with; B-E-R-R-Y.  “Marie, can you see that.” “Yes” “Read it” “Berry” she said as she began nibbling on her left hand thumbnail.  I wrote C-A-B-I-N. “Marie can you see that?” “Yes” she said  “What does it say?” I asked. Marie hesitated and gave me a quizzical look. Our rhythm was disrupted. Our gazes locked ever so briefly until I realized my mistake. I began again.  I pointed at the word C-A-B-I-N on the white board.  “Marie can you see that?”  “Yes”  “Read it” I instructed. “Cabin” she said. I smiled at her as we got back into our rhythm. I conducted these mini verbal-boot camps with Marie two to three times per week. I met Marie while working as a Life Enrichment Director in a secured memory care unit. She was in the later stages of Alzheimer’s disease.  During my first weeks of employment, I began learning about the 33 resident’s I’d be responsible for keeping ‘active’. Marie was one of those residents.  She was born and raised in the foothills of North Carolina. She later married and gave birth to two lovely daughters. Marie was the primary wage earner in an era when women were typically homemakers. At her professional peak she was a Vice President of a bank in that same Carolina region where she’d lived her entire life.  When I met Marie she was in her late 80’s with a fabulous head of white hair. Her blue eyes twinkled when she smiled. She didn’t weigh more than 90 pounds and sat in a wheelchair, unable to walk anymore. She had a curve in her spine thanks to years of osteoporosis. As I learned more about Marie’s past, I found out that she had been an avid reader. One caregiver told me that when Marie had first moved in, she would sit in the nurses’ station and read aloud from magazines they provided.  Unfortunately for me, I never had the opportunity to see that side of Marie. However, armed with the knowledge of her love of reading, I immediately started strategizing about how I could tap into that part of Marie’s past. What could I do to nurture her love of reading, at this advanced stage of her disease journey? Standard magazines weren’t an option – too many words too much clutter, they didn’t keep her attention. Books, were no good either.  Frequently, while I did paperwork, Marie would sit in my office and keep me company. I would tell her stories about my new boyfriend (who would later become my husband). I chatted with her openly and although Marie couldn’t fully answer, her eyes, her expressions and her body language spoke to me in volumes. I cherished our time together.  One day, while in my office Marie blurted out a random word that caught me by surprise. I saw her glance at the white board in the corner that hadn’t been wiped clean from a word-game played earlier in the day and I quickly realized the word she uttered was on the board. That was my ‘Ah-Ha’ moment. Our word-game routine began instantly. Initially I tried full sentences. Then shorter, but that didn’t work with Marie. Through trial and error, I discovered that Marie was most successful when there was simply one word on the board written in large bold letters. I had to use simple prodding language to get her to look at the board and then more prodding to get her to read the word aloud. Which is how we finally landed on our reading-rhythm.  I wrote the word. I got her attention by calling her name and asking her if she could see the word. Then, gave the simple command of “Read it.” On the occasions I would accidently prompt her with, “what does it say?” she would stare at me in silence. My suspicion was that Marie couldn’t respond because Alzheimer’s disease could affect one’s ability to understand language nuance. Folks with Alzheimer’s disease understand and process messages LITERALLY.  Therefore when I asked her “what does it say?” it was confusing because a word on a white board doesn’t ‘SAY’ anything. When I replaced that term by saying “Read it” instead, she responded every time.  Approximately 14 months after meeting Marie she began losing the battle with her unforgiving disease. Within a short time she was bed ridden and receiving comfort care measures only. The frontline staff and I were encouraged to say our ‘good byes’. I sat at Marie’s bedside. Her room, filled with an abundance of pictures and precious mementos, was dimly lit. Gentle music played on a boom box in the corner. Our eyes locked, as they had so many times before. I began praying aloud while holding her gaze until a lump got stuck in my throat and I stopped speaking.  Selfishly, I wasn’t ready to say goodbye to my friend and tears began rolling down my face. I closed my eyes and willed myself to stop crying for fear of upsetting Marie. As I opened my eyes, Maries’ frail hand was reaching out until it touched my cheek. She extended a fragile index finger and brushed away one of my tears. Again, our eyes locked and a warm feeling washed through my body. Here, in her waning moments Marie needed no white board, she could read my face without effort. In her time of need, she was comforting me. Within 36 hours Marie was called to eternal life. My special friend was finally at P-E-A-C-E. 

[theydontremember]

Jim

“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. 

[theydontremember]

Joe & Helen

I was in New Jersey visiting one of the communities that I supported as a Divisional Director of Memory Care. This particular space had a calm, soothing and welcoming vibe filled with residents from very diverse backgrounds. There were several veterans, former school teachers and a former New Jersey Highway Patrolman. The Patrolman had survived an entire career keeping the roads of New Jersey safe. Yet, here he was, still regal and stoic and now living with Alzheimer's disease. The cruelty of the disease, often takes my breath away - and I've been doing this work for over ten years. Unfortunately, it never gets easier.  However, I decided early in my career to focus on all the amazing things I can still learn from the folks with the disease. And, trust me....the lessons are endless.  On this Jersey visit while I stood in the main living room chatting with Rachel the Director, we were approached by a gentleman. His smile was quick and his handshake was strong.  Rachel introduced me to JOE and quickly mentioned that the flame red Jaguar in the parking lot belonged to him. I had but a mere second to come up with a snappy comeback. You see, in the 'World of Alzheimer's',  it's a thin line between the real truth and the 'fuzzy-jumbled-vague memories. So, as a trained professional- I've become a PRO at just - 'being in the moment' with anyone I meet within the secured walls of a Dementia unit. Some days a wrinkled- faced -senior will ask for their mother or confuse me with being a relative.  And, that's okay.  I simply 'roll-with-it'. I do my best to 'be-in-the-moment' with them. The theory is, to minimize the anxiety and fear that goes along with losing your memory, it's best to let the person with the impairment be whothey THINK they are and let them be where they THINK they are. So, here I stood shaking hands with JOE and being told that his red Jaguar was in the parking lot. I smiled and said, "Gosh, don't we ALL wish we had a red Jaguar." Rachel piped up quickly, "No seriously, Joe has a red Jaguar, he goes out every morning for the paper and coffee." Wow, either this was the most LIBERAL secured Dementia Unit on the East Coast or....there was another explanation. Rachel explained.  JOE'S wife HELEN had Alzheimer's and instead of leaving her alone in this Dementia unit , JOE had decided to move in withHELEN. "We've been married over 55 years," JOE remarked. "I'm not about to let her go now." The lump in my throat was overpowering. It was then, that I met HELEN. A pint-sized, lovely lady with an impish grin and amazingly bright blue eyes. Her well maintained hair was thick and white. She was a bundle of energy and a bundle of words. She was drawn to me immediately. And I realized in a split second why it would be hard to be apart from her. First, she complimented me on my blouse. "I just love what you are wearing," she cooed. "It's a lovely color on you." I loved HELEN instantly! She and JOE stood close to each other and spoke over one another as they both brought me 'up-to-date' on their marriage and life journey. I learned that they'd never had children, that JOE worked for the Post Master General and that their wedding ceremony was at a Roman Catholic Church near the Jersey Shore. It was time for lunch. JOE took HELEN by the hand and guided her to their appointed table. He helped her order her meal and kept the table laughing with various quips and witty comments. I was in awe of his commitment to stand by his wife through this un-holy part of their life journey. After lunch, for some reason, still unknown to me - HELEN was drawn right back to me. She complimented me on my blouse again. And stood close as she shared with me, in great detail, a story about the children that her nephew and his wife had adopted. She was animated as she explained about the children and the various countries that they were from. I was mesmerized by her. JOE stood nearby, with a loving smile on his face, he nodded his head and was equally as absorbed in the story HELEN was telling. She continued givings exquisite details about the various countries and the adopted children. "That's amazing," I said. "What countries are they from?" HELEN came up for air for a brief second as she pondered the answer. I turned to JOE - He shook his head and muttered gently, for only MY ears to hear..."I have no idea what she's talking about." I turned back to HELEN, who was unfazed and non-pulsed. She was back into story-telling mode....and didn't skip a beat. Again, I had to swallow hard as I tried to compose myself. JOE was so loving and so supportive - he was the MODEL spouse. Selfishly, I wanted to take him on the road with me - so that HE could help me train all the paid professionals who didn't always seem to 'GET IT' the way JOE clearly did. He was living his life in all of HELEN'S 'moments'. My bond with JOE and HELEN only deepened as they invited me into the room that they shared. I glanced around the tidy space. One twin bed on the left side while the other twin bed was up against the window. There were cherished possessions and pictures properly placed about, playing witness to a life that was fully lived. JOE and I sat on the bed, under the window while HELEN stood close by. She continued to speak quickly sharing super-clear details about their wedding day. JOE handed me the amazingly well-kept wedding album. We flipped through the pages and I gazed at the black and white photos of the happy, smiling and much younger version of the two seniors that were with me now. They looked like movie stars! And, I told them so. "Oh, you can't imagine how good our photographer was," HELEN said. "JOE, what was his name again?" I held their photo album in my hand and turned the pages gingerly as both JOE and HELEN shared stories and details about every picture. I was completely captivated. 20 minutes later, I stood to leave. HELEN thanked me for stopping by, "I know you have such a busy schedule," she commented. I looked at her...clearly she didn't know my schedule, she didn't even know what I did for a living - but, she continued to amaze me with her steady stream of clear, concise language that was surprisingly coherent sounding for someone with Alzheimer's disease. I thanked them for the visit from the bottom of my heart. JOE turned his back for a moment and opened up a dresser drawer. "Here," he said, "please take this - you've been so kind to us, I want you to have it," Yes, please, you must take it" HELEN chirped. JOE handed over a blue fleece scarf, neatly folded, that still had the sales tag attached. "JOE, really....you don't have to give me anything," I said. "Please, I insist. I know you are busy and you've been so kind" "Would you like something to drink?" HELEN offered. I reached for the scarf and clutched it to my chest. At that moment in time - it was the GREATEST GIFT anyone had ever bestowed upon me. I was near my breaking point. I'd swallowed lumps and tears all day - in an attempt to be the consummate professional. But, my eyes glazed over as I stood in their one room space filled with 55 years of treasures. I hugged them both and promised to visit again, someday soon. I handed the lovely blue fleece scarf to Rachel as I prepared to leave. She tucked it into her desk drawer with the promise she'd put it back, where it belonged in JOE'S drawer.  As I boarded the plane to fly back to my home I silently reflected on the power of JOE'S devotion to HELEN.  JOE'S ability to live-in-the-moment with HELEN and make her remaining days on earth as lovely as possible was inspiring. I hugged my husband extra tight that evening.

[theydontremember]

Mabel

It began with Mabel.  I’m not exactly sure what day of the week it was when I first met her but, I’m certain the month was January. Time, wasn’t really important to her and when I was with her, it wasn’t important to me either.  She didn’t depend on a calendar and she rarely, if ever, looked at the clock.  

Mabel wore glasses and had a complexion that was smooth and virtually un-wrinkled. She had dark brown hair with patches of gray that had tight curls after her weekly visits to the beauty shop. She wore no makeup, which made her appear younger than her chronological age. I don’t know how old Mable was when we met. She never told me. 

She rarely spoke to me at all.  In fact, she hadn’t spoken to anyone, in quite some time; which is why I was taken aback the first time I heard her voice.

We were in the sitting room. The afternoon sun was warming the space and I was standing in the middle of the circle, my back to Mabel.  There were others in the room and they were all looking at me, waiting for the action to begin.  From the corner, came a staccato voice in a loud nearly shrill tone, “One, Two, Three…” I spun around to see who the owner of this outburst was….but, the voice had vanished. I glanced in Mabel’s direction. Mabel stared straight ahead, her eyes wide, her expression blank.

I began passing out the simple instruments to those in the circle. Jingle bells for some, maracas’ for others. Our music circle would begin shortly. Once again, the voice broke through the stillness, strong and emphatic….”One, Two, Three….”  This time, when I spun around I was quite certain the words were coming from the seemingly quiet and detached Mabel. I walked over to her, “Mabel? Are you alright,” I asked as I gently touched her shoulder.  She gave no response…just a mere pursing of her lips.

As I stepped away, the voice broke the silence again. It was indeed, Ms. Mabel. I smiled. It was great to hear her voice.

When I met Mabel, she was in the later stages of Alzheimer’s disease. She was a resident at the skilled nursing facility where I worked as an Activity assistant. When she wasn’t lying in bed, Mabel was lifted by no-less than two people into her wheelchair.  Mabel had been in an advanced stage of Alzheimer’s disease  for quite some time by the time I came to know her. Her hands were in a permanent clenched position that usually rested uncomfortably on her upper chest, just under her chin. Mabel couldn’t eat, drink, dress or bathe without assistance. She was what’s known to professional caregivers as ‘Total Care’.  I found her fascinating.

Her big brown eyes, although fixed into a constant glare-like trance, still glistened and danced when enticed to do so. Mabel barely spoke, but those eyes had much to say.  The private room that was her home was filled with family pictures and mementos from years gone by. Mabel had family and Mabel was loved.

Mable’s inability to speak in full sentences never stopped me from talking with her. Yes, I did all the talking, but I was convinced that Mabel knew exactly what I was saying.  I held her hand and told her about the weather. I would give Mabel a daily weather report and share details about my life.  Some days I got choked up when I sat close to her bed and held one of her family photos up for her to see. I never actually met one of her family members in person, but their presence was everywhere.

On that sunny day, in the sitting room as the other residents anxiously awaited our music circle activity to begin, I pressed ‘play’ on the boombox and the recognizable rhythm of a familiar tune burst through the speakers. I stood in the center of the circle coaxing, enticing and encouraging the residents to shake their hand held instruments and move to the music. Before long we were singing, humming, laughing and enjoying.

Mabel was in the music circle but unable to hold an instrument. Her gaze remained fixed and her lips remained pursed tightly shut. Undeterred, I approached her while I shook the maraca’ and sang the familiar tune. My smile was large and my heart filled with love for my friend Mabel. And, out of the corner of my eye I saw the movement. I quickly looked down, just in time to see Mable’s slipper-covered foot, tapping in time with the music, as it rested on the foot pedal of her wheelchair.

Yes, Mable was moving to the music in the only way she was able. My heart skipped a beat while it swelled with pride. In an instant, Mabel taught me a valuable lesson. Regardless of what Alzheimer’s disease had done to her body. Regardless of what abilities had been robbed from her. On that day, in that moment, with familiar music playing while an activity assistant sang off key – Mabel tapped her foot and kept time with the beat. And that was music to my ears!