Sharing the trial and error learned lessons of a MS spouse caregiver / carer about family, home care, and transition to the care facility era from 23 years of living with Multiple Sclerosis as a family ... a ‘warts and all’ picture of living with MS.
push and roll outings are both freedom for Patti after the hell’s kitchen of summer
unfriendly Multiple Sclerosis temperatures and great caregiver exercise for me.
temperature and distance are always constants but when you can add time travel
to the push and roll – well, it’s just a jump to the left and then a step to
the right. Put your hands on your hips and … I’m digressing ... back to
mile trail is always interesting because of tanks, forts and such to see. It’s
also our favorite place to train for the MS Walk, "Army Strong" signs everywhere and such. However when they add
the reenactors for living history weekends - it’s the best!
Hanging out with the Americans
Hanging out with the Americans we got to listen to “In the Mood” literally ‘cranking out’
on an old record player you had to crank up (note the handle) before putting on
that Glen Miller 78 rpm record. Notice the Lucky Strike ‘red’ cigarettes on the
cot. We learned that staging-area camps during WWII were named after various
brands of American cigarettes, e.g. Camp Lucky Strike. All the hustle and bustle
is a reenactment of induction & basic training camp.
German Afrika Korps
German Afrika Korps tent was more about weapons and motors, including an awesome
BMW motorcycle from North Africa campaign. All the weapons you see in the picture fit
into and on that motorcycle and side car gunner. The WWII Red Cross was
represented by Deutsches Rotes Kreuz (German Red Cross). We also learned that
unlike the Allies, the German Army allowed women in non-combat positions such
as signal corps, transportation, etc.
Russians … well Patti’s smile says it all. History is a party with the comrades
in the Russian tent.
History is a party with the comrades in the Russian tent.
has always been greeted like an old friend in our story. Living with Multiple Sclerosis is
challenging enough without nature rudely complicating each day with summer heat
and humidity. Autumn has always meant the return to enjoying outdoors with MS
friendly temperatures of Fall and Winter.
year the Fall Equinox was somewhat special for me. I first learned of a “9 mm vague
nodular density in left upper lobe” on the past Winter Equinox. It has been 9
months since my lung cancer timeline began.
Sooo we created our own 'autumn equinox 5K push and roll' to celebrate the first day of Fall. With MS
perfect 72˚F (22˚C) temperatures and accompanied by breezes off
the River, I pushed and Patti rolled around City Island, across the Susquehanna
River, up and down River Front Park, and back across the river to our
wheelchair accessible van on the Island.
was the workout, maybe it was just the day … but we both agreed the fresh
squeezed lemonade from a vendor on City Island was the best we ever had.
it’s worth this was the exact same route I walked for a Lung Cancer 5 K a month
ago and it only took me 50% longer to complete pushing Patti.
I have watched the grieving for the death of another long term caregiver as told through posts
and comments on the Well Spouse Association Facebook Page.
pain, the worry, the frustration, the fear and the anger of fellow long term
caregivers shout out of my PC screen. Disagreements over why? What’s right?
What’s wrong? Yet in the end … all march forward.
For thousands of years, Ecclesiastes has reminded us there is a time for everything and this is a time to remember that “30% of caregivers die before those they are caring for. Some studies show deaths
higher”. Yes, years and decades of intense stress diminishes the immune system
and multiplies chances of chronic illness, for example my own recent diagnosis of lung cancer after 22 years of long term spousal caregiving.
have to ignore their own health or put symptoms on hold to accommodate the
person they care for. Often we simply have no time left for our own health
needs after hours ‘on hold’ or spent in waiting rooms as a caregiver/advocate.
is reportedly abundant. If someone cannot see or imagine positive outcomes or
solutions well they are less apt to care about their personal well being.
I am preaching to the choir in this blog … improving our own health habits will
not make us immortal or even invincible.
At best we
can extend the battle into overtime, fighting a fight that cannot be won. The
person we care for will not “get better soon” nor will they “die soon”, we care
in the real world not the Hallmark version.
My Dad was
my Mom’s long term caregiver for over a decade. When he found himself ‘dying soon’
of pancreatic cancer he confessed to me he prayed to God to take her before him
so she would not be left unattended.
... How did
that work out? He lived 4 months longer than her.
term caregiving is not for everyone. It’s driven, measured and rewarded
internally not externally.
We are unique soooo ... “Hey,
let's be careful out there!”
Dusting my dresser I lifted my ‘action figure’ and found myself reminiscing briefly over
the past quarter century of Multiple Sclerosis spouse caregiving.
ago my co-workers gave me this action figure when I finally had to abandon
juggling working full-time, spouse caregiving, and basically single parenting.
before it was even an overused word meant leaving work early, racing home to
pick up Patti from the bathroom floor, shower and dress her, clean up the
smeared excrement and urine from the bathroom, spray the house, and open
windows before the elementary school bus arrived with our daughter and her
friends. … I had to simply ‘find a way’ to juggle all the lives I was responsible
for -- that’s what MS home caregiving
the care facility era began I felt ‘defeated’ at first before finding renewal
in the teamwork era. I committed myself to 3.5 outings per week on average,
followed by preparing and transferring Patti from her wheelchair to bed by
myself using the bear hug one person unassisted transfer. We never used a lift
in homecare and in my mind remaining part of her bedtime routine half the
nights of every week keeps the care facility an ‘era’ rather than an ‘end’.
I guestimated I have pushed Patti’s wheelchair over 5,000 miles (8,000
kilometers) over the years. If I had to do the same with “lifting” I would
guestimate a total of 25 tons (22,700 kg) of one person unassisted transfers over
just one year in the care facility era. Each home care year was ‘exponentially’
more. When caring for a non-ambulatory person, caring is about lifting hundreds
of tons over the decades. Whatever ... it's a lot more than a warranty on any
year my lung cancer diagnosis and surgery has been my own personal kryptonite
and it’s annoying me. My transferring Patti to bed myself has dropped 10% and I
‘feel’ those manual transfers in my muscles affected by lung cancer surgery …
life be like a comic book where caregivers’ red capes never fade and instead it’s
the disease that weakens?
months ago I began my experiments with finger food to hopefully prolong Patti’s
ability to self-feed.
months ago I accompanied the earliest experiments in self feeding with verbal
cueing … now here I was preparing to experiment with introducing TV to eating.
… with nothing more than monitoring, Patti safely and enjoyably self-fed
herself the evening’s finger food bowl of fresh fruit, boneless buffalo wings,
and cheddar cheese … while watching the Simpsons followed by the evening news.
attribute much success to cutting everything into varying shapes and sizes
along with the differences in touch to the textures of fruit, poultry, and
cheese. Let’s face it licking one’s fingers after buffalo wings is something that
gets your attention.
while eating for Patti with her Multiple Sclerosis related dysphagia can be dangerous to fatal.
However what I have always found is that it is the kind of distraction. Large gatherings
involving meals are audio and cognitive over- stimulation. For people with
cognitive or dysphagia symptoms frankly it is more about trying to survive than
ever enjoying a noisy busy dinner.
I am not
saying TV is a substitute for anything.
What I am saying is that I was able to introduce a variable, a single ‘distraction’,
into my experiments with finger food for self-feeding without a problem for
Patti. … In fact she surprised me when she discussed some news stories during commercials.
Perhaps engaged might be a better word than distraction?
care facility era I look for symptoms I especially can have a unique ‘hands on’
impact with. I can no longer do it all but I can do some of it now even better.
we just arrive, lower the ramp, roll out Patti in her wheelchair and off we go. However Labor Day
morning while waiting for showers to break we observed what I can only describe
as the accessible parking lot paralympics.
Patti with her visual impairment noticed and would ask what was that? Or there
goes another one?
thirty minutes, a handful or so of cars pulled in and parked with accessible
parking placards. Out of each car popped at least one person who sprinted
through the rain directly past our van and into an unnamed minor league
certainly were not blind, nor were they unable to walk 200 ft, nor did they
display any portable oxygen, nor require the use of a wheelchair or assistive
device … or the more visible reasons for a PennDot accessible parking placard.
one of two conclusions …
skeptics - able bodied people would misuse someone's accessible
parking placard for a parking pass on a rainy day.
optimists - a minor league ball park employs many people wearing sprinting prosthetics
to work under their clothing. by Patrick Leer
can amplify dependency especially if someone is like Patti, non-ambulatory and
not only wheelchair dependent but dependent on others to push her and get her
in an out of foul weather.
weather forecasts have a completely different impact on people like us ‘living
accessibly’ than on our umbrella toting totally able bodied fellow citizens.
down pouring waters from the remnants of Hurricane Issac met the Festival of Sparklingly
Waters (Kipona) on City Island in the Susquehanna River it was a good time for
ducks not so great for people.
early Labor Day morning we sat through several down pours waiting for the
weather to beak listening to an audio book (weather forecast remained “cloudy”
in spite of downpours).
notice the teepee through the windshield of the photo, Patti already in her
water proof wheelchair lap blanket, a reflection of me taking the picture in
the rear view mirror and the sheer boredom captured on Patti’s face.
was more than up for some Gene Kelly style dancing in the rain, I let Patti
make the call. While we have the clothing to get waterproof the bigger question
is will the outing be fun for her.
opted to head for a nice dry noon matinee of the stop-motion animated comedy
horror “ParaNorman”. Let’s face it,
pilgrim zombies have mobility challenges and face stigmas that made our morning
seem easy. IMHO freakishly fun even for big kids like us.
weather and all that can be a pain in the butt for anybody’s plans but when a
woman with severe multiple sclerosis is being pushed around in her wheelchair
by a lung cancer survivor let’s face it, if the outing ends with laughter –
it’s a good outing.