A disease does not define me: opening doors to possibilities

A disease does not define me: opening doors to possibilities

My family is no stranger to Alzheimer’s disease. I cannot remember a time in my childhood when elders in my life were not living with dementia. We did not question these losses because this was our “normal.” We now know that evolving memory changes, with subsequent losses, are not a normal outcome of aging.

One difficulty with mom’s diagnosis of dementia was that each sibling saw her changes in a different way, and chose to either accept or refute the evidence. It is like this with many families: we see with our eyes but when left open to interpretation, the heart rules perception.

At times we felt deserted by our extended support circle, and could not fathom the sudden shift in loyalties. I questioned whether individuals backed away because of misconceptions and misinformation or that they were always meant to be “fair weather friends.”

I encourage families to understand and accept this reality, and concentrate on identifying the people who are “all in.” Time spent commiserating over those lost dampens the enthusiasm for acceptance, and appreciation, of the real supporters.

Here are some ideas to build a support system:
• Contact your Local Alzheimer Society for support, guidance, and education.
• Access to medical care is paramount: keep appointments with your care providers, and meet with your pharmacist to review medications, including over the counter choices.
• Look at ways to become socially and physically engaged with other individuals: explore community programs such as “Minds in Motion™” (an Alzheimer Society program), and community group activities that promote wellness.
• Foster social circles at organizations that are applicable/meaningful to you both, like seniors’ organizations, hobby/activity groups, churches etc.
• Consider joining a support group to explore feelings and experiences.
• Look at opportunities for respite help, such as home visitors or adult social day programs.

And last but not least, may we be reminded:

We are all unique individuals, many of us living with illnesses or conditions, but these do not define us, measure our value or tell our story.

May we unite and build unconditional bridges of acceptance, support, compassion, and respect because we are all living tapestries.

A disease does not define me: living tapestries

Look beyond the outer shell,
A mere vessel for my inhabitance.
Age is polishing my external appearance,
With a cloth dipped in life’s experiences.

Evade judgment, comparisons, even gratuitous thoughts.
What now exists is part of my internal mosaic,
With chosen and inherited pieces,
Mine alone, to carry forward.

So if my mind, or body defies my will,
To live without the encumbrance of illnesses.
I must simply acknowledge the reality,
We are all but living tapestries.

Refer to me gently, in loving tones.
Embrace my aging, as it has been gifted.
Time is bequeathed, as fate would have it,
Heartbeats track the dwindling moments.

Live in faith, with knowledge treasured,
That a disease will never speak my name.
Or define my works, or take my soul,
Or steal the dignity that defines me.

If you missed last week’s post from Ann, you can read it here.

If you’d like to hear more from the Alzheimer Society, sign up for our enewsletter here.

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Ann-ChartierAnn 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.
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