There are many ways to get involved and show your support of Alzheimer’s disease and dementia this month. One small act can make a remarkable difference to the men and women who are impacted by dementia.
Top 5 ways you can make a difference this month:
Learn more about Alzheimer’s disease. Understanding Alzheimer’s disease and dementia is the best way to help those that are impacted. Do you know the risks, prevention, and how to best support those with the disease?
Spread the word. Talk to family and friends about dementia and build awareness in your community. You can also get involved in our advocacy efforts by becoming a Champion for Dementia. By becoming a Champion, you can help to bring positive change to the lives of Ontarians who have been impacted by dementia.
Host or Attend a Coffee Break. Coffee Break® is our major nationwide annual fundraiser where friends, co-workers and customers gather in communities across Canada to raise funds for their local Alzheimer Society. Host your own event or visit a Coffee Break near you to make a donation in exchange for a cup of coffee.
Make a donation. Your donation will support vital programs that men and women with dementia depend on.
Leave a gift in your will. Consider making a lasting impact through our Legacy Giving program. A bequest is one of the easiest ways to make a legacy gift. Your current income won’t be affected, and you can receive significant tax benefits. Take the first step, request our free estate planner and guide today.
One might think that having a disease with no cure wouldn’t leave a person with much hope to draw on. The truth is, if you’d asked me how I felt about the future after I was first diagnosed with Alzheimer’s disease, my answer would have been far from ‘hopeful.’ Then, one day, that changed.
With Mother’s Day just around the corner, the crunch is on to find that perfect gift to show your mom just how much she means to you. But what if your mom has dementia? Here are a few simple, engaging ways to show your mom how much you care—on Mother’s Day or any other day of the year.
You survived the holidays and you’re now getting back into your regular routine. For many people, the holidays are a time to get together with friends and relatives that you haven’t seen in a while. As joyful as these gatherings can be, they can also bring new worries. You may have noticed that your father seems more forgetful. Perhaps your aunt’s dementia seems to be getting worse. Or, a dear friend may have seemed frailer than you remembered.
We try to care for relatives and friends in our own homes for as long as possible. But when a person has dementia, this can be especially challenging. Even families who are well resourced and living close to each other often struggle to support someone who needs a lot of care at home until the end of life.
As difficult as it is, moving to a long-term care home is more the norm than the exception for families of someone with dementia. Research shows that 57% of seniors living in a residential care home have Alzheimer’s disease and/or another form of dementia. And, 70% of people with dementia will eventually die in a nursing home.
At the Alzheimer Society, people who have dementia often tell us they worry about someday moving into long-term care. Their families tell us that it can be the hardest decision they’ll ever make: “How will I know it is time?” “What about the promises we made to care for each other until the end?” “How do I choose a home?” “How much will it cost?” “Will my partner get the care she needs?”
That’s why the Alzheimer Society has created a new series of checklists to help families know what to ask and look for when choosing a long-term care home, and how to adjust to the transition. These come in four easy-to-use brochures with lots of practical tips:
The Holidays are the perfect time of year to bring friends and family together to connect, catch up, and celebrate the coming New Year! For those with dementia it is just as important to be able to spend time with their loved ones.
But managing the extra stimulation a gathering can bring and making sure they enjoy themselves can sometimes be difficult. Family and friends may also be uncertain about how to act and what to say.
To help with these difficult situations and to make your Holidays stress-free the Alzheimer Society of Ontario has created 10 Holiday tips:
Ask for their help with simple but important tasks like helping prep the meal, decorating the room, or cleaning up together
Keeping rooms well lit can help with reduced vision and sun downing
Have a quiet space available for the person with dementia if the gather becomes over stimulating
Remove major distractions such as loud music or televisions.
Keep the number of guests to a moderate size to make sure the gathering isn’t overwhelming
A nap can help one feel more rested for the evening’s entertainment
Having everyone sit and eat together will help make sure everyone is included in the festivities
Serve your meal at your usual time to make sure not to upset their normal routine
Share tips with family and friends to create better communication and minimize any concerns they have
Have activities ready that are suited for someone with dementia, such as revisiting old family photos or telling stories
As a child, I recall the holidays were about family traditions; the plump orange and the red delicious apple in the Christmas stocking, and if luck would have it a chocolate treat. This delicacy was sparingly consumed, to preserve the experience for as long as possible. There was always a small toy to open, and something wearable, and practical.
I recall spending hours, staring at the tree with the tangled jumble of coloured lights, and painted bulbs decorated with idyllic holiday scenes. Mom always cooked the perfect turkey with all the trimmings, and lovingly baked a fruitcake with pudding, as that was a British tradition.
At the age of fourteen, my father passed, and this recreated our holiday experience. On the first year, we attended the home of extended family members, and were embraced with attentiveness and love. Mom was a guest, and her apron for the first time, was neatly tucked in the broom closet. That year, there was no homemade cake loaded with candied fruit in the pantry.
The years progressed, and eventually I became the hostess and purveyor of the feast, although admittedly, I lacked my mother’s finesse for making it all look so easy. Slowly a new pathway was woven, and my childhood experiences were changing, as well as my responsibilities.
When mom began to exhibit signs of dementia, we realized traditions would not leave us, but rather they would need to evolve with her. As a family we would have to find a common ground, and learn to embrace the “new normal.”
As her disease progressed mom struggled with Christmas shopping, and was soon content to place the conquest for a perfect gift behind her. The last present she purchased for me was a pair of pink pajamas. I recall quite vividly how proud she was that “the prize” was so embraced. I do believe at times we forget that validation of one’s efforts is even greater than the gift itself. I recall keeping those pajamas for years; long after mom passed, as they were an amazing key to a wonderful moment in time. The fact they were tattered and faded did not diminish their value to me, and I must confess I anguished when it was time to let them go.
When mom required more care than we could manage, she entered a LTC home. Just before Christmas we would celebrate as a family, and bring her to the nearest sibling’s residence. It was there she watched with wonder, the ruckus of her children, grandchildren, and great grandchildren. Less verbal now, and sleepy at times, she observed with a twitch of amusement, before sleep would win and capture her attentiveness.
Eventually, as mobility became more difficult, our gatherings moved to the LTC home, because we relied more heavily on the professional care team to insure mom’s physical needs were met.
There were times, I mourned for the return of innocence, the tall fresh tree (most often tilting to one side), the vision of mom in her apron, stuffing a fat turkey with bread, celery, and spices, and the wonderment of believing in a saintly sprite with rosy cheeks.
It then occurred to me, that although my traditions were changing to accommodate various factors beyond my control, I was not losing my past, but rather creating my future. In spite of mom’s memory changes, her family remained the gatekeeper of her life’s stories. These tales were nurtured and shared with our loved ones, and through story telling, the next generation was being primed to take possession of this legacy.
As this holiday season approaches, may we be reminded to embrace the moments, rethink traditions, and go with the flow. As care advocates, we are more adaptable than our loved ones living with dementia.
Here are some tips to alleviate holiday stressors:
Balance Rest and Activity: The stimulation of noise, a potentially new environment, and the change in routine may contribute to added stress for a loved one with dementia.
Think about Meaningful Activities: Is there a familiar task that could be delegated to a loved one so as to promote inclusion in activities? Mom was always the queen of potato peeling, and felt her contribution in the kitchen was important and valued.
Remember physical needs: In a different environment, gentle cueing to the bathroom location may be needed.
Be flexible: Would a luncheon be less tiring than a sit down supper? Is the option of potluck available?
Embrace what is: I think one of the most important lessons I have learned through this journey is that mom’s capabilities changed as dementia progressed, but she was still mom. Dementia could not take that away. Our story is never truly lost. It is like an inspiring novel, filled with adventures, laughter, sorrow, pain, and at times embellishments, depending on the weaver of the tale.
And so, in tribute to those who love someone living with dementia, I honour you as the gatekeeper of their memories. This poem is for you…
Guardian of Memories
I am the guardian of memories.
Lovingly the precious keys are fortified,
And I will carefully secure their rightful destiny.
Erosion, cast not shadows on my doorstep.
I am the guardian of stories.
Those vivid tales of rich adventures past,
Golden threads and woven reminiscence,
Valued above all monetary reckoning.
I am the guardian of heritage.
Traditions honoured, past and present merging,
Successors nurtured, ever-watchful vigilance,
We will find our rightful place in history.
I am the guardian of the future.
And in years to come when I am softly beckoned,
To find my rightful place beyond the stars,
My essence lives and legacy continues.
For we will not relinquish all our memories,
Circumstance or chance will not prevail.
A disease will hold no credence here, no merit,
Our stories will continue on their journey.
Ann Chartier has been a practicing Registered Nurse, for almost 4 decades. As the founder of Elderpilot.com she advocates for people living with dementia and assists Seniors navigating LTC and Retirement Homes.
Ann was a Family Support Counselor and Education Lead/Writer with the Alzheimer Society Niagara Region. (2012-2015) She continues to be a guest speaker, Alzheimer Society Volunteer and shares her stories from the eyes of a care advocate for her mom.