Holidays
like most things are biased toward able bodied able minded celebrations. When
that is not your life we adapt.
First
and foremost heat and humidity is synonymous with the 4th of July
and also public enemy #1 for Multiple Sclerosis, something has to give here. We
adapt making the 4th of July more MS friendly by turning it into a
morning holiday.
Parked in
the shade of a weeping willow tree Patti was close enough to see and interact
with crafts and contestants in Anything Floats race in Boiling Springs, PA … while
the temperature was still only 78˚F (25.5 ˚C). Later as the temp neared 100˚F (37.7˚C) Patti
was already enjoying her air conditioned siesta!
Anything Floats July 4 Boiling Springs 38sec
Anything Floats July 4 Boiling Springs 38sec
In this
care facility era we are blessed with teamwork getting ready. Having help with
Patti who is not only non-ambulatory but unable to assist with any of her
activities of daily living is a godsend. Arriving to find Patti up, changed,
dressed, and transferred from her bed to her wheelchair is immeasurable in the effort
and stress it saves me and empowers our outing.
Progression
of MS symptoms has unquestionably affected outings over the years.
Duration
for example is affected by bowel and bladder incontinence. With progression, it’s
not about finding an accessible commode but about leaving to find a bed to
transfer Patti to and change her Depends and clothing.
Even
sitting upright in her wheelchair for long periods of time is ‘complicated’.
Dysphagia
puts her at increased risk of choking. Holidays and the hospitality of food
seem to go hand and hand. Large loud gatherings with food are not fun as my
vigilance must be undivided.
Blend in
heat and each and every symptom above only worsens.
Sooooo
why even get out of bed? Simple to go where no one has gone before. Some follow traditions, we create new ones.
Caregivingly Yours, Patrick Leer
videos: www.youtube.com/daddyleer
That says something about you, Patrick, your flexibility and willingness to look for a new tradition to make, that you might even have to make next year, but still something to enjoy the day together exploring what is out there available to you guys. That race sounded like a cool thing to see in the cool of the day!
ReplyDeleteWe had to make our own new traditions, choosing to stay at home to comfort a silly corgi pup that hates loud noises like fireworks instead of going to see them in person. So I get to catch up on blog reading and we tried a new recipe or two for dinner and it all seemed to work for an enjoyable evening :)
betty
Interesting you mention staying at home for example I never even knew fireworks displays were televised. Caught a little of Macy's fireworks from NYC harbor featuring Katie Perry entertaining the fleet and Kenny Chesney singing from a roof top bar in Manhattan - something for everybody ... front row view and no traffic for me :)
DeleteWe're having to adapt too for different reasons than yours. Without Nicole, it's different.
ReplyDeleteAnd this year no fireworks in our State allowed so it felt like another day at home. =(