A Disease does not Define me: Opening Doors to Possibilities
The difficulty with mom’s diagnosis of dementia was that each sibling saw her condition in a different way, and chose to accept, or refute the evidence before us. And that is how it is 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 family, and could not fathom the sudden shift in perceived loyalties. I questioned whether individuals backed away because they were under the guise of misperceptions, misinformation, or simply the fact that they were always meant to be "fair weather friends.”
I strongly encourage families to understand and accept this reality, and concentrate on identifying the people who are “all in". Time spent commiserating over perceived losses or slights, dampens the enthusiasm for acceptance and appreciation, of the real supporters.
Finding help 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" (Alzheimer Society) and community group activities that promote wellness
- Foster social circles at organizations that are applicable/meaningful to you both: senior's organizations, hobby/activity groups, churches etc.
- Consider joining a support group to explore feelings and experiences
- Look at opportunities for respite help: home visitors and/or adult social day programs
And last but not least, may we be reminded;
We are all unique individuals, many 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.