Photo below: My Great-Grandmother meets first great-great-grandchild (6 months before death with dementia)
Tru here. How much of the way I have handled my multiple diagnoses and dys-Abilities have been influenced by living in extended family, and watching how my family members handled their physical and cognitive challenges?
I think I was six years old when my 71-year-old great grandmother became unable to live independently, and began living with us for months at a time.
We didn’t know she had the early stages of dementia. We didn’t know why she acted the way she did. It created havoc in our house, however we kept trying.
Great-grandma showed us love and we showed her love … and we all kept trying year after year of her long visits.
It would have been so much better
if there was such a thing as a diagnosis of early-stage dementia at that time,
… if we could have learned what the symptoms were
and what reasonable expectations were,
in order to avoid unreasonable expectations.
Instead there were many many misunderstandings
and false accusations.
By seven years later we knew more what to expect, altho we still did not understand why.
I was about twelve years old when Great-grandma asked if I wanted to travel with her to Canada. She recognized her own cognitive problems, so she knew she would have difficulty traveling on her own. I was young enough that I don’t remember much of the trip, but I remember my surprise when she got lost in the bathroom at the airport.
Great-grandma out-lived two husbands and her three children. She died at 87 years old, when I was 21 years old.
But she taught me persistence;
If one way doesn’t work then you try another way …
and you KEEP on trying new ways
until you find one
that enables you to complete what is necessary.
Pick your priorities.
If it is important … then you never give up.
Remembering family dynamics of extended family setting demonstrates how very important it is for those around me to recognize and accept the diagnosis … instead of trying to fit me into the “normal” box … where I continually fail to meet expectations.
She taught me that just because you forget a name doesn’t mean you panic.
Relax; You have not forgotten the essence of the person,
and how important that person is to you.
She taught me how to keep on keeping on
despite dementia symptoms.
.Photo above: Mom had gone from part-time to full-time live-in care-partner, helping Grammy cope with dementia symptoms (altho Grammy had not yet received diagnosis). I had recently received Social Security Disability for both physical and cognitive dys-Ability, and was visiting several weeks. i introduced my first service dog, Hero (the first “Hero, Service Dog”). He pulled my wheelchair, but you can see i am steadying myself by holding my arm over his back.
… and then my GRANDMA Erma:
Grammy’s very first symptoms began close to the same year my great-grandmother died, but they were assigned to depression. Symptoms came and went thru the years, but it took many years before they were finally diagnosed as dementia.
Grammy’s challenges with dementia emphasized that the person’s essence remains.
She did not recognize her reflection in the mirror, but
her character of unselfishness,
… of time and energy investment in the lives of others,
was consistently reflected.
Her coping strategies changed
and her emotions sometimes became hard to manage,
but her essence remained.
Spending time with Grammy taught the importance of routine.
She taught me the impact of consistent FREQUENT physical contact with those we love.
And Grammy taught me that there is a LANGUAGE of touch.
Photo above was during Dad’s sick time to recover from cancer surgery.
We bought a travel trailer and took our first “vacation”.
I was definitely a “daddy’s girl”, and 13yo.
my FATHER RaMon:
I was thirteen years old when Dad got cancer and was given two percent chance of life.
He died of cancer fifteen years later, when I was 28 years old.
I gained tremendous perspective by watching the way he lived those 15 years.
His battle taught the importance of transparent communication with Creator, self, and those we love.
I learned physical impact of a positive attitude and faith,
… and i learned PERSPECTIVE;
the priority of keeping personal circumstances within a larger perspective of family and community.
It is not all about me, but despite my challenges and limitations I CAN make a difference in the world around me.
As persons with dementia dys-Abilities, I think it is important to put our symptoms and challenges into a larger perspective. How many children, grandchildren, or others watching us now, will be dealing with these same symptoms in future years?
What will my own children and grandchildren learn from the way I handle my symptoms and challenges?
What can I do now
to ensure they are positive productive lessons
… instead of bitterness and fear?
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A beautiful article about living gracefully with illness and how to live in community Thank you for sharing Tru
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Lori, Thank you for your encouragement. — Tru
Hi Tru not sure my first comment went through so I’ll try again. This is a great article showing the beauty of living in community and living gracefully together Thank you for sharing
I have been reading your posts for a while – I am 55 and have memory problems that are still undiagnosed but gradually worsening with time. I don’t feel that I have to have a diagnosis but if I did it would put me on a recognised path with the health professionals. I have ups and downs with how I feel about it, but it helps to read your posts to know that I am not alone.
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Sara, Thank you so much for sharing. Feeling alone can really intensify problems! There are some causes of memory problems that are quite reversible, such as nutritional deficiencies, and some other health conditions, etc. To me those are good reasons to discuss the problems with your doctor ASAP. Good luck! 😀 — Tru
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