Navigating the Journey: Care Priorities at Different Stages of Alzheimer’s

In the heart of suburban Ontario, where autumn leaves paint the landscape in vibrant hues, Sarah Matthews stands at her kitchen window, lost in thought. The gentle rustling outside provides a stark contrast to the emotional whirlwind she experiences daily as a caregiver for her mother, Margaret, who was diagnosed with Alzheimer’s disease two years ago. Like thousands of other Canadians facing similar challenges, Sarah’s story reflects both the profound difficulties and unexpected moments of grace that come with caring for a loved one with dementia. Her journey, marked by evolving care priorities at different stages of Alzheimer’s, offers invaluable insights for those embarking on this path of compassion and resilience.

The Early Stage: When Memories Begin to Fade

Margaret was once the heartbeat of their family gatherings, known for her legendary butter tarts and ability to recall every grandchild’s favorite story. The changes began subtly – a forgotten appointment here, a misplaced purse there. “I initially dismissed these moments as normal aging,” Sarah recalls, her voice softening. “But when Mom started getting lost on her way home from the local grocery store she’d visited for thirty years, I knew something was different.”

The diagnosis of Alzheimer’s disease arrived like an uninvited guest, transforming their lives overnight. Sarah found herself transitioning from daughter to caregiver, a role she never anticipated would come so soon. The journey that followed would test her resilience, reshape her understanding of love, and ultimately teach her valuable lessons about the strength of the human spirit.

Care Priorities in the Early Stage

1. Building a Foundation of Support: One of Sarah’s first realizations was that successful caregiving requires more than just dedication – it demands a well-orchestrated support system. Working with her family doctor in Toronto, she connected with the local Alzheimer Society chapter, which became an invaluable resource. “They helped me understand that I wasn’t alone in this journey,” Sarah explains. “There were others in our community facing similar challenges, and together we could find strength.” Through support group meetings at her local community center, Sarah met Janet, another daughter caring for a parent with Alzheimer’s. Their friendship blossomed over shared experiences and mutual understanding. “Sometimes, just having someone who truly gets it makes all the difference,” Sarah reflects. “Janet taught me that it’s okay to have difficult days, to feel overwhelmed, and most importantly, to ask for help.”
2. Creating a Comprehensive Care Strategy: The complexity of Alzheimer’s care requires a multifaceted approach that evolves with the disease’s progression. Sarah worked with a geriatric care coordinator to develop a flexible care plan that addressed both immediate needs and future considerations. This included establishing daily routines that provided structure while maintaining Margaret’s dignity and independence. Sarah discovered that mornings were best for important tasks when her mother’s cognitive function was typically sharper. They established a ritual of sorting through old photographs after breakfast, an activity that not only stimulated Margaret’s memory but also created precious moments of connection. “These morning sessions became our time to reminisce and share stories,” Sarah shares. “Even as Mom’s memories began to fade, the emotions tied to those photos remained strong.”
3. Safety Modifications: As Margaret’s spatial awareness declined, safety modifications throughout the home became essential. “We installed motion-sensor lights in the hallways and bathroom, which helped prevent falls during nighttime wandering,” Sarah explains. “But more importantly, we learned to adapt our environment without making Mom feel like she was losing her independence.” They replaced traditional appliances with safer alternatives, such as an electric kettle with automatic shut-off, and organized the kitchen to make frequently used items easily accessible. These changes allowed Margaret to maintain a sense of autonomy while ensuring her safety.
4. Establishing Clear Communication Channels: Sarah maintained a detailed journal of her mother’s symptoms, medications, and daily activities, which proved invaluable during medical appointments. “Documentation became my anchor,” she says. “It helped me advocate effectively for Mom’s needs and track changes in her condition over time.” This meticulous record-keeping also facilitated better communication with other family members and healthcare providers, ensuring everyone involved in Margaret’s care was on the same page.

The Middle Stage: Navigating Increasing Challenges

As Margaret’s condition progressed, Sarah found herself facing new challenges that required adjusting their care strategy. The middle stage of Alzheimer’s often brings more pronounced cognitive decline and behavioral changes, necessitating a shift in care priorities.

Care Priorities in the Middle Stage

1. Adapting Communication Techniques: Sarah noticed that her mother’s ability to express herself verbally was diminishing, leading to frustration for both of them. She learned to rely more on non-verbal cues and simplified language to maintain their connection. “I discovered that sometimes, just sitting quietly together and holding hands could convey more than words ever could,” Sarah reflects. She also began using visual aids, such as a large calendar with important events marked clearly, to help Margaret orient herself and reduce anxiety about forgotten appointments or visits.
2. Managing Behavioral Changes: As the disease progressed, Margaret began experiencing mood swings and occasional agitation. Sarah worked closely with her mother’s neurologist to develop strategies for managing these behavioral changes. They explored non-pharmacological approaches first, such as creating a calm environment and identifying triggers for agitation. Sarah recalls a particularly challenging period when Margaret became convinced that someone was stealing her belongings. “Instead of arguing, I learned to validate her feelings while gently redirecting her attention,” Sarah explains. “We started a new routine of ‘treasure hunts’ where we’d look for her ‘missing’ items together, turning a potential source of conflict into a bonding activity.”
3. Enhancing Daily Living Activities: Maintaining Margaret’s involvement in daily activities became increasingly important as her abilities changed. Sarah modified tasks to match her mother’s current capabilities, ensuring she felt useful and engaged. “We started baking together again, but instead of complex recipes, we focused on simple tasks like mixing ingredients or decorating cookies,” Sarah shares. “Seeing Mom’s face light up when she accomplished these tasks was incredibly rewarding for both of us.”
4. Exploring Respite Care Options: Recognizing the importance of self-care, Sarah began to explore respite care options. She enrolled Margaret in an adult day program twice a week, which provided stimulating activities for her mother and much-needed breaks for Sarah. “At first, I felt guilty about taking time for myself,” Sarah admits. “But I quickly realized that taking care of my own well-being was essential for providing the best care for Mom. Those respite days allowed me to recharge and return to caregiving with renewed energy and patience.”

The Late Stage: Embracing Comfort and Connection

As Alzheimer’s progresses to its final stage, care priorities shift once again, focusing primarily on comfort, dignity, and quality of life. For Sarah, this stage brought new challenges but also profound moments of connection and love.

Care Priorities in the Late Stage

1. Prioritizing Physical Comfort: With Margaret’s mobility severely limited, preventing bedsores and maintaining hygiene became top priorities. Sarah worked with a home health nurse to learn proper techniques for turning and positioning her mother, as well as skincare routines to prevent complications. “It was physically demanding work,” Sarah acknowledges, “but knowing I was keeping Mom comfortable gave me a sense of purpose during this difficult time.”
2. Nurturing Sensory Connections: Even as verbal communication became nearly impossible, Sarah found new ways to connect with her mother through sensory experiences. She played Margaret’s favorite music, gently massaged her hands with scented lotion, and read aloud from beloved books. “There were moments when Mom would squeeze my hand or her eyes would flutter in response to a familiar song,” Sarah recalls. “Those small reactions became incredibly precious, reminding me that our connection endured even in silence.”
3. Managing End-of-Life Care: As Margaret’s condition declined, Sarah faced difficult decisions regarding end-of-life care. She worked closely with a palliative care team to ensure her mother’s comfort and dignity were maintained. “Having those conversations early, while Mom could still express her wishes, was invaluable,” Sarah reflects. “It gave me the confidence to make decisions aligned with her values when she could no longer communicate them herself.”

Lessons Learned: Wisdom for the Journey

Throughout her caregiving journey, Sarah gained invaluable insights that she now shares with others facing similar challenges:

1. Build Your Support Network Early: “Don’t wait until you’re overwhelmed to seek help,” Sarah advises. “Connect with support groups, reach out to friends and family, and explore community resources as soon as possible. Having a strong support system in place makes all the difference.”
2. Educate Yourself, But Trust Your Instincts: While Sarah found immense value in learning about Alzheimer’s and caregiving techniques, she also learned to trust her intuition when it came to her mother’s needs. “No one knows your loved one like you do,” she says. “Use that knowledge to advocate for them and make decisions that honor their wishes and values.”
3. Find Joy in Small Moments: Amidst the challenges, Sarah discovered unexpected moments of joy and connection. “This journey taught me that love doesn’t require perfect memories,” she reflects. “It lives in the gentle moments of care, in the squeeze of a hand, in the shared laughter over a cup of tea. While Alzheimer’s changed our relationship, it didn’t diminish our connection – it just taught us new ways to express it.”
4. Practice Self-Compassion: Sarah emphasizes the importance of being gentle with oneself throughout the caregiving journey. “There will be difficult days, moments of frustration, and times when you feel like you’re not doing enough,” she acknowledges. “Remember that you’re doing the best you can in a challenging situation. Allow yourself grace and celebrate the small victories.”
5. Plan for the Future While Living in the Present: As Margaret’s condition progressed, Sarah continued to adapt their care strategy. She began exploring memory care facilities in their area, understanding that there may come a time when professional care becomes necessary. “It’s a difficult conversation to have,” she acknowledges, “but planning ahead helps me feel more prepared for whatever challenges lie ahead.” This forward-thinking approach extended to legal and financial planning. With the help of an elder law attorney, Sarah ensured that Margaret’s wishes were documented through powers of attorney for both property and personal care. These preparations provided peace of mind while allowing them to focus on making the most of their time together.

A Journey of Love and Growth

As Sarah reflects on her caregiving journey, she recognizes the profound impact it has had on her life. “Caring for Mom through Alzheimer’s has been the most challenging and most rewarding experience of my life,” she says. “It’s taught me the true meaning of unconditional love, patience, and resilience.”

For those beginning their own caregiving journey, Sarah offers this final piece of advice: “Remember that this path isn’t easy, but you don’t have to walk it alone. Reach out for support, celebrate the good moments, and know that in caring for your loved one, you’re doing something truly meaningful and beautiful.”

Resources and support services are available through the Alzheimer Society of Canada, local health networks, and community organizations across Ontario. These organizations provide education, counseling, respite care, and connection to others sharing similar experiences. By tapping into these resources and embracing the lessons learned by caregivers like Sarah, families can navigate the challenging journey of Alzheimer’s care with greater confidence, compassion, and hope.