What can a family do?
Two years have passed since my dear, gentle mum left this world at the age of 85, taken by the relentless grip of Alzheimer’s disease. Her absence has left an indelible void in my life, one filled with bittersweet memories and profound lessons learned through caring for her.
Her body remained surprisingly agile even in her final months; she could still touch her toes and perform high kicks from her chair. Her hearing, though selectively sharp, sometimes seemed to defy age, and her hand-eye coordination was remarkably intact. Yet, amidst these fragments of physical vitality, she had lost the precious ability to communicate verbally. Words, once woven into lively conversations and expressions of love, faded into silence as she struggled to form them into meaningful sentences.
Reflecting on this journey, I share my story not only to honor my beloved mum and celebrate the bond we shared, but also to extend a hand to others navigating the heartbreaking realities of dementia.
She didn’t know who I was, though I do think she knew that I was someone familiar, with whom she felt safe.
And, she still cherished her love for flowers. My dad, who often brought her fresh blooms, shared with her a deep bond over gardening. Even as dementia advanced, stealing from her the familiar names of plants and flowers, her attraction to the vibrant beauty of nature never waned.
I noticed her newfound preference for the brightest and most colorful blooms: the striking elegance of bold lilies, the vivid display of multi-colored tulips, and even the charm of artificially-colored carnations. Each time, she would inhale their fragrance deeply, whispering the word, “Beautiful.” Her appreciation for their beauty was a reflection of her own beautiful soul, which shone brightly despite the encroaching shadows of her illness.
Seeing the signs of dementia in Mum
We first noticed subtle changes in Mum’s behavior and personality a few years after my dad, her soulmate, passed away. These signs were barely perceptible to anyone outside our close family circle.
Mum had always been a compassionate person, eager to lend a helping hand, particularly to elderly or lonely neighbors. However, what once fulfilled her gradually became a burden, a source of irritation.
She had always possessed impressive numeracy skills, adeptly managing her personal finances with an excellent memory. But as time went on, small inconsistencies began to surface—she started buying duplicate groceries, inexplicably paid for newspaper deliveries weeks in advance, and would often offer visitors a cup of tea, only to forget to make it. These signs, though initially subtle, signaled the quiet onset of the unwelcome changes that Alzheimer’s would bring.
Slowly she became less confident outside the home and using public transport.
Once a skilled cook and baker, Mum began to struggle with even the simplest tasks; she started overcooking meals and, on one occasion, set fire to the toast, having forgotten it under the grill. Upon realizing her mistake, she insisted on eating the charred remnants, humorously declaring it was “so I don’t do it again!” After that, she never used the cooker unsupervised.
Slowly, her cognitive abilities slipped away, one by one. A passionate reader in her time, she found herself unable to follow the threads of a novel, though, somewhat ironically, she continued purchasing books, which sadly lay unopened. Her love for general knowledge crosswords faded, replaced by the simpler pleasure of rapid-fire word searches. Though she still read newspapers, the stories often left her emotionally shaken. Television, once a familiar comfort, transformed into a source of dread and suspicion, as she grew convinced that those she watched could see her too.
Pride, coupled with a deep sense of embarrassment, marked her recognition of these unsettling changes. Having cared for her own mother, who endured Alzheimer’s for 20 years, she was no stranger to the disease. Yet, pride held her back from seeking help, and persuasion to visit her GP fell on deaf ears.
Encouraged to see the GP
Then came a turning point one year during a family holiday, when Mum disappeared from their hotel. The incident rattled us all to the core. Early that morning, a compassionate stranger discovered her alone on a railway station platform and took her to the local police station. It was this event that finally prompted her to see her GP upon her return home, albeit reluctantly. She noted in her diary, with a touch of defiance and vulnerability, “They think I’m daft.”
Her diagnosis of Alzheimer’s disease marked the beginning of our family’s profound journey of discovery and enlightenment. We found ourselves thrust into the unknown, each of us grappling with the need to navigate the changes, frustrations, anxieties, and inevitable losses that accompany this relentless disease. Together and individually, we sought to find strength, understanding, and a path forward amidst the challenges that lay ahead.
At times it was like trudging through deep, ever-shifting sands with no prospect of ever reaching the oasis that would restore us!
We had, in some unspoken way, already begun mourning. It wasn’t outward or overt, but it simmered quietly in our hearts—a mourning for the loss of the future we had envisioned with Mum, or Grandma, each of us perhaps unconsciously harboring dreams of shared moments and milestones that now seemed to fade into impossibility. We mourned, graduall and silently, as each of her faculties and skills slipped away, as she herself seemed to recede further from the vibrant person we once knew.
Coming to terms with this new form of relationship, accepting that it would be different yet still profoundly meaningful, was a pivotal step for me. It became a ‘together journey’, a shared path where love, patience, and understanding had to replace the certainty and continuity we once took for granted.
Recognising the positives
Life shifted focus, centering on how we could help Mum live the best quality of life possible. It was a journey marked by myriad emotions—challenging, frustrating, and sad, yet also joyful, hilarious, warm, loving, and immeasurably rewarding. In many unexpected ways, Alzheimer’s allowed me the privilege of getting to know Mum on a deeper level. It presented opportunities to discover new facets of her personality, share unique experiences, and cultivate a deeper love.
The narrative surrounding dementia is often dominated by negativity, and understandably so. It is a cruel disease that slowly dismantles the brain, erasing memories, knowledge, understanding, emotions, communication, and physical abilities. Described as the slowest of deaths, it often represents an extended period of bereavement for families.
Yet now, having recently marked the second anniversary of my mum’s passing, I feel compelled to share the joys and triumphs, the positive moments, and the laughter and learning that Mum’s journey with dementia brought into my life. Despite the challenges, there were beautiful moments, times of humor and connection, and newfound insights that I cherish deeply.
1. Outings should be planned
Newfound wisdom in our journey taught us: Embrace new experiences, but approach them with less ambition and thoughtful planning. Always have a backup plan and, importantly, maintain a sense of humor.
In the early stages of Mum’s dementia, I occasionally took her on day trips. Utilizing local transport was a deliberate choice to keep her connected with familiar patterns from the past. However, challenges arose when impatient bus drivers reacted to her inability to present her card correctly, heightening her anxieties. Yet these moments sometimes transformed into amusing anecdotes—like when a driver demanded to see my own OAP pass, much to Mum’s delight, and we laughed together because I was only 50. Her previous upset forgotten, she cheerily engaged in conversation with a toddler all the way to town.
One memorable trip to Skipton was progressing smoothly—until our stroll through the market, an activity she and Dad had always cherished, met resistance. Each time I meandered toward a stall, she’d huff and shoot me a ‘black look’. Yet all annoyance vanished at the mention of coffee and cake at a cozy tea shop!
Coffee outings became a source of immense joy for Mum. Even the simplicity of an ASDA cafe she deemed ‘beautiful.’ My favorite memory, however, is our visit to Betty’s Tea Rooms in Harrogate. The elegance of a silver service lunch, attentive staff, and delectable cakes served from a classic trolley left a lasting impression on Mum.
The only challenge during these outings was managing ‘visits to the ladies.’ Ensuring Mum didn’t wander while I was occupied required help, and I remain deeply grateful to the countless kind-hearted strangers who watched over her, allowing us to share these precious day trips with minimal anxiety.
2: Singing is great for people with dementia
New wisdom we embraced was that singing releases endorphins and brings immense joy. It’s essential to cast aside any concern for others’ perceptions and always keep a sense of humor.
Whether it was hymns, old songs, musicals, or nursery rhymes—anything with a rhythm became nourishment for the soul. Singing offers profound benefits for the brain, acting as a bridge reconnecting us with emotions and memories.
We were wonderfully surprised to discover that even as Mum’s short-term memory faltered, and even when she no longer recognized me or lost her ability to articulate, she could still sing along to songs with just a small nudge. Her ability to stay in tune remained untouched.
One initiative, “Singing for the Brain,” offers a space where people affected by dementia come together to sing songs they cherish, in an atmosphere that is both enjoyable and welcoming. Through vocal exercises, it fosters brain activity and enhances overall wellbeing.
One of our cherished last outings was to the Grand Theatre in Leeds to see “South Pacific.” Though initially, as we settled into our seats, Mum expressed a desire to leave, her anxiety palpable as the row filled and lights dimmed, I found myself beginning to panic too. However, my worry was unfounded.
Once the familiar melodies of the musical filled the air, Mum’s apprehension ebbed away. The power of music worked its magic, transporting her to a place of comfort and familiarity.
As soon as the orchestra played their first few bars, her face lit up. She sang every song… out loud.
I was ready with a stock reply in case anyone nearby took issue, but to my relief, no one did. Not that it would have deterred me; for those two transformative hours, Mum was happy, somehow connected, and serenely calm. Her joy was palpable, singing along with the melodies that resonated with her heart.
As we later descended the plush staircase and emerged into the daylight, she clung tightly to my arm. “What are we doing here?” she asked with a hint of anxiety, followed by, “Are we going home now?” Just like that, the enchanting moment slipped away.
On the bus ride home, we perused the program together, the images within unfamiliar and unrecognized by her. Yet, for me, the memory of that day at the Grand—of Mum singing, enveloped in the magic of music—remains indelible, a cherished treasure to hold onto forever.
3: Reading and reciting can help with memory
New wisdom that emerged from our journey was recognizing that even when someone appears to have lost their memory or the ability to recall words, they still possess the capacity to surprise and amaze you with what they remember. It’s vital to maintain a sense of awe and wonderment.
Mum never lost her passion for reading, particularly her love for illustrated children’s books. She devoured stories by Julia Donaldson and Raymond Briggs, discovering joy within their pages.
Titles like “The Gruffalo,” “Room on the Broom,” “The Giant Jam Sandwich,” and all the tales of Beatrix Potter filled our time together, as she read out loud to us and with us, much like she did with her children years ago. Her chuckles at the illustrations, descriptions of scenes, praises for colors, and tracing of lines with her slender fingers brought the stories to life.
On one occasion, after enjoying a favored story for the umpteenth time, I offhandedly recited the first line of a newspaper article I was reading, “I wandered lonely as a cloud…” To my astonishment, Mum continued, “That floats on high o’er vales and hills,” and then recited the entire Wordsworth poem with exquisite intonation and emphasis.
Enticed by her unexpected recall, I tried another: “Earth has not anything to show more fair…” With a softer voice and gaining momentum, she continued, “Dull would he be of soul who could pass by,” reciting the entire sonnet by Wordsworth with an expression and reverence that suggested she had learned it nearly 70 years ago. Wordsworth himself would have been proud.
The memory of that day remains etched in my mind—a reminder of the incredible and unpredictable nature of memory and the enduring impact of the past.
4: Life skills don’t just go away
New wisdom came with the realization that just because someone can no longer perform household tasks independently doesn’t mean they are incapable of doing them.
Mum had always taken pride in her home, with chores like vacuuming, polishing, dusting, and ironing structuring her day. As Alzheimer’s progressed, there were moments where she’d either sit vacantly or follow us around anxiously. One day, I handed her a duster, and she happily began dusting the bookshelf. Though not as meticulously as before, it occupied her until she cheekily asked, “What else are you going to MAKE me do?” That’s when my virtuous bubble was playfully burst!
On another occasion, while baking—a tradition she passed on to each of her three children and which we’re now teaching our grandchildren—she joined in. She carefully measured ingredients and mimicked my actions to combine and knead the dough. Though puzzled at first by the rolling pin and biscuit cutters, the moment they were in her hands, she adeptly rolled the dough and enjoyed cutting out shapes. Later, as we dunked biscuits into hot tea, she was pleasantly surprised to learn she had made them!
When I asked if she wanted to help, Mum looked blank, staring at the scales and the flour and clearly not understanding.
Ironing, a task not loved by many, was something I inherited from Mum, who was meticulous in her approach. Every collar edge was neatly pressed, every seam flattened. However, with time, it became too dangerous for her to continue unsupervised due to risks of scorching fabrics or burning herself. Instead, we’d sit together and chat while she worked through a pile of blouses or tea towels. It allowed her to focus, concentrate, and achieve something tangible, despite her condition.
When I was crafting bunting for my daughter’s wedding, I brought materials and templates to Mum’s; we spent a delightful afternoon cutting, ironing, and matching colors—enabling her presence at the wedding even if she couldn’t be there physically.
Later, as Mum resided in a care home, she contributed by folding laundry or napkins. These simple acts highlight how care home staff might often overlook opportunities to engage residents, helping them reconnect with daily living activities. Simple endeavors like folding towels, setting a table, or napkin folding can be relearned. These tasks serve as both activity and distraction, offering focus and drawing individuals out of apparent unresponsiveness.
5: Exercise and play are key
New wisdom emerged in recognizing that someone with dementia, who may appear ‘frozen,’ uncommunicative, or detached, can indeed engage in exercise and play. Never underestimate the transformative power of fun!
As Mum’s dementia progressed, I delved into understanding the condition, earning a diploma in Dementia Care. Teepa Snow’s positivity and ‘hand under hand technique’ became invaluable, as did “Move it or lose it” founder Julie Robinson’s inspiring seated exercise program.
I was beginning to understand the condition more, but that did nothing to alleviate the sense of helplessness, frustration and sorrow that this progressive disease causes carers to feel.
One afternoon, while helping out in my sister’s absence, I discovered Mum’s impeccable hand-eye coordination. After a long day stalled indoors due to rain, and having read the same Julia Donaldson story repeatedly, Mum grew agitated. During a brief telephone call, she started banging on a table. Sitting too far away to intervene directly, I tossed a small soft teddy her way. With remarkable reflexes, she caught it and immediately threw it back, a cheeky glint in her eye, anticipating my next throw. Her mood changed entirely.
Seated throw-and-catch quickly became a favorite activity, using soft toys, balls, and bean bags. Her speed and accuracy were astounding, and I was fascinated by how the game lifted her mood and demeanor. Even in later years, when she seemed vacant, playing catch would help her ‘surface,’ lighting up parts of her brain as she animatedly engaged.
Mum particularly enjoyed the game in a group, picking who to throw to and deciding on the style—underarm or overarm. Sometimes, she’d intentionally throw out of reach, celebrating with a fist pump—an uncharacteristic yet gleeful gesture!
Sometimes we would recite nursery rhymes, or the alphabet while playing. Sometimes we’d sing a song she knew. It didn’t just make Mum smile; it made us smile too!
Creating cheerleader pom-poms from pipe-lagging and shredded carrier bags, we experimented with balloons, bubbles, and indoor frisbees (with varying success). It was a safe way to exercise, and her enjoyment was so profound that she’d need reminders to rest, which always amused her as we demonstrated.
People may hesitate to engage older adults in activities associated with childhood, fearing it might seem insulting. Yet, there is a child within all of us. As dementia progresses, recent adult memories often fade first, while childhood memories become more salient. Connecting with those childhood joys can be profoundly enriching and healing.
Embracing these moments with Mum reinforced the wisdom that fun and play transcend age, connecting us to a timeless part of our identity.
6: Love unconditionally
New wisdom emerged with the understanding that even as dementia takes away abilities and capabilities, it cannot steal away LOVE.
As Mum’s mental capacity diminished, she became increasingly ‘locked-in,’ no longer recognizing who we were. Yet, it was evident that she sensed we were the people who loved her and whom she could trust implicitly.
At times, Mum became agitated—often when fearful or when she couldn’t grasp what was happening or what we asked of her. A collection of soft toys soon became her companions, providing comfort as she cuddled and stroked them.
We discovered that a baby doll held a special calming power. Mum would tenderly cradle it, softly rocking it to sleep. Her innate nurturing instincts remained untouched. As she frequently enjoyed walking, introducing a pushchair for her doll imbued her with purpose and direction. She never lost her gentle, caring touch.
This journey with Mum reaffirmed that the essence of love and care endures, undiminished by cognitive decline. Her interactions with the doll underscored that love, expressed through nurturing actions, remains a lasting presence, offering a beacon of light even in moments of darkness.
7: Make more new memories
New wisdom teaches us to use the time wisely to create new memories, explore new experiences, and develop a transformed relationship with your loved one.
As Mum’s memory began to fade, we created memory books filled with pictures and our recollections of her past endeavors. These books served as conversation starters for us and for her carers. Though we encouraged care home staff to read the biographies we compiled, it seemed only a few actually did. Mum would later peruse them with little recognition that they pertained to her. Eventually, she stopped reading, but the photos continued to pique her interest.
They helped carers to get to know Mum before Alzheimer’s disease.
While photo albums that once engaged her during the early stages of dementia became less meaningful in later years, they remain invaluable treasures for us. For me, capturing those moments of connection and joy during Mum’s long journey with Alzheimer’s was worth every 200-mile round trip to see her.
I hold onto photos and videos that remind me of those precious times. Though I wish Mum hadn’t endured this journey, I feel truly blessed for the unique opportunities it provided to connect with her in ways that might never have been possible otherwise.
Dementia provided a lens through which our relationship with Mum was reframed, offering us the chance to appreciate moments, however fleeting, and to cherish a journey of love, patience, and shared discovery.