As one
family living with MS for 23 years, “we don’t need no stinkin' studies.”
When I
‘just happened’ to return home shortly after leaving to find flames coming from
the kitchen stove about 15 years ago while Patti sat oblivious at the kitchen
table eating lunch – I needed no tests, scans, or neurologists … MS cognitive
symptoms no matter how mild they are labeled by a neurologist are dangerous to
a family’s health.
After 23
years, I better than anyone understand the fine line between hope and denial
that is the life thread of living with Multiple Sclerosis as a family. Who wouldn’t clutch at ‘MS brain fog’ instead
of ‘MS dementia’? Except that one can kill you and those around you.
Reading
a news story two mornings after Christmas about a local man who was found dead
less than a football field from his home I could not help but remember the
pivotal moment when home care ended for us.
In the
tragic news the man was in the early stages of Alzheimer's disease and "unfortunately
the weather conditions — the rain, the snow and the wind — were just factors
that were against him."
In our
story, eight winters ago … an artic chill throughout the house awoke me.
Sitting in our wide open front door were our three cats staring at Patti
outside in sub 0˚F (sub -17˚C)
weather in her wheelchair dressed in just a nightgown. Her wheelchair had
crashed to a halt in a bank of shoveled snow where our sidewalk turns. I have
no idea how long she had been out there and when asked she responded something
to the effect she needed to walk the cats. ???
Just
suppose I had not returned home when I did, suppose the wind had blown the door
shut?
Dementia is a scary word and we seem to go out of our way to invent diagnostic euphemisms.
I pray
families can find the balance between hope and the safety of those they care
about.
.jpg "wheelchair accessible nativity")
Patrick Leer
.jpg "wheelchair accessible nativity")
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/
My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/
care facility
multiple sclerosis
caregiving
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