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.
it’s the combination of reading other Multiple Sclerosis related blogs and the dawn
of the 23rd year of our own story of living with MS but my heart
Guns N’ Roses was right, “... Nothin' lasts forever … and it's hard to hold a
candle in the cold November rain …”
all seem like such youngens either chronologically or in terms of MS progression.
I pray they all can stay forever young, stay forever mild. It sure doesn’t get
as long as I can still push a wheelchair and the first snow falls it was time
to get Patti out for a push and roll through the park adjacent to her care
dementia symptoms are such cunning thieves. Patti enjoys the ‘now’ of the push
and roll but she quickly forgets as she remembers her longer ago pre-MS times
was home for dinner and back to my ongoing project to extend Patti’s self-feeding
for as long as possible. Thanksgiving and Thanksgiving left overs are not exactly
dysphagia friendly food and require me or someone to feed Patti along with
other with the flick of a switch our gas fireplace leaps to life as I hand Patti
a bowl she can self-feed with cut up MorningStar Farms vegetarian buffalo wings,
cut up mango spears, and grapes to enjoy in front of a fire after a push and
roll through the season’s first snow. One way or another we all live 'in the now', some of us just remember it.
Trekkies out there? Any ‘normals’ remember the Prime Directive, Starfleet’s
General Order #1? (Trivia answer at the end)
point here is that as spousal and/or family caregivers we each have our own
Prime Directive ... and as National Caregivers Month 2012 comes to a close, why not share?
always been, is and I suspect always will be Patti’s ‘safety’.
story began so dramatically with Patti awakening on Thanksgiving morning 1989 suddenly
unable to walk and barely about to see and talk with her first major Multiple
Sclerosis exacerbation that I was baptized by fire into the world of caregiving
and medical advocacy … while somehow juggling our 18 month old daughter in my
Thanksgiving Day is a “tradition” for others but for me it’s become more like a
minefield of challenges to my prime directive of Patti’s safety.
related dysphagia smothered in abundant food demands 200% of my attention, feeding
Patti, monitoring, and verbal cueing to prevent choking while the discordant
symphony of a large family dinner plays on.
and travel is always like spitting into the wind, do it on Thanksgiving Day and
well you just up the ante. Should something go wrong able bodied people can just
walk away, this is not an option for a non-ambulatory woman in a wheelchair
inside a wheelchair accessible van requiring a ramp to exit and enter.
guests use a restroom for us it’s more like a mutated Turkey Day “beat the
clock” game. From the time I pick her up until we return it’s a gamble on incontinence.
Patti’s only option would be me physically transferring her to and from a bed
and changing her.
line – did Patti enjoy the time? ‘In the now’, yes!
related dementia erases each holiday moment as it happens, more like an
etch-a-sketch Thanksgiving. Driving away when Patti cannot tell me what we just
did, it does make me wonder about the equation of risk vs reward.
the first time in 23 years facing my own health issues, a lung cancer diagnosis,
I realize I may not be able to be the linchpin in future caregiving equations and wondering
what is more important traditions or prime directives?
promised for trivia buffs - the Prime
Directive dictates that there can be no interference with the internal
development of alien civilizations. … Ooops, those original Pilgrims must have
missed the memo from Starfleet.
sent me an old picture over the weekend which considering the whole
significance of this Thanksgiving week … well, it’s kind of hard to look away …
a whole lot of irony, what ifs and more.
traveling to the early mid 1980’s; pictured here we were participating in a
“Kiss Off M.S.” promotion, a bar room version of the kissing booth. $5 donation
to Multiple Sclerosis got you a kiss.
quite sure I had no clue as to what M.S. was about. However standing behind a
bar while women paid $5 to kiss me … come on now what’s not to like about a
night like that.
we were dating, Patti and I would not be married for a couple years and
likewise I doubt if Patti had ever heard of MS.
myself pausing to reflect on my coworkers flanking me for they would go on
to live ‘normal’ lives. Yet today they both ‘rest in peace’ while I may be the
only one left standing to hit this send button ... so I better not dawdle.
I ever try to explain this concept to Patti I find myself slipping into some
mutation of “I is the IS and you is the WS as you are me and we are all
together … I am the walrus, goo goo g'joob.” We just end up laughing and by then
her Multiple Sclerosis dementia related symptoms have erased the conversation
and we can simply start over again … or not.
the technologically too cool of modern social media, IS = ill spouse and WS =
well spouse. Obviously we are out of sync perhaps that is because our story
began in the last Century.
Thanksgiving morning will mark the beginning of my 23rd year
as my wife’s spouse caregiver.
was consequential when it began for me.
Former First Lady Rosalynn Carter was about the only person making
noise. And frankly some stigmas were making my life harder. Multiple Sclerosis
was, and is, portrayed as mild. Anyone successfully juggling both caregiving for
a spouse and basically single parenting had to be a woman.
and this thing you are using to read this was not around. We went to our neighborhood
library for information.
still remember the first time years later that I discovered someone like me out
there in this mysterious place called the Internet.
when I cruise by ‘on line’ support groups or pages they seem so adversarial to
me, more about WS vs IS.
to not like caregiving moments, Lord knows I get that. Maybe it’s about too much access too soon. I
know for me if I pause to take a deep breath then what I have to say comes out
line it’s always been about choice. Patti did not choose to be severely
disabled with MS. I chose to give care.
advice from an old dude is even germane anymore … as insane as caregiving
moments have driven me over the decades, I have always tried to remember it is
the MS I hate not the IS.
the latest issue of NMSS Momentum I was intrigued by their cover article “Not Your Friend’s MS”.
myself reflecting on how many Multiple Sclerosis spouse caregivers, family and or friends who
actually provide care or one day may need to provide care are not affected
similarly by the phenomena of “Not Your Friend’s MS Caregiving”?
led to reminiscing …
ago my Dad gave me a copy of “Helping Yourself Help Others” by former First
Lady, Rosalynn Carter who first became a caregiver as a teenager helping her Mom
as her Dad died of leukemia. I will always remember reading for the first time,
"There are only four kinds of people in this world: those who have been
caregivers, those who currently are caregivers, those who will be caregivers,
and those who will need caregivers". … Decades later Rosalynn Carter
remains involved as President of Board of Directors of the Rosalynn Carter Institute for Caregivingof Georgia Southwestern State University.
Mitchell Kowalski and Zane Kotker
the same time, misfiled on a library shelf I found a copy of “Mainstay: for the
Well Spouse of the Chronically Ill” written in hindsight by a MS spouse
caregiver, Zane Kotker under the nom de plume, Maggie Strong. Most importantly
to me at the time, she wrote about caregiving for severe and progressing MS until
her husband’s death … ‘not your friend’s (mild) MS’ as portrayed everywhere else in MS
publications of the time. Today Zane Kotker continues her writing career but as
a fiction author under her own name living in the Pioneer Valley of
Massachusetts. That original 80’s book “Mainstay” spawned what today is known
as the Well Spouse Association.
two long ago, pre Internet advocates for caregivers back when I was starting are
good examples of the range of philosophy of “not your friend’s caregiver”.
right or wrong! Yet in the beginning, who among us does not search for or want to
be inspired by the ‘right plan’ for the future. That is until unpredictable
twists and turns of fate leave us all … living the ‘best of possible’ lives.
Awareness sometimes is just reality biting you in the ass.
My Dad became my Mom’s caregiver spouse in 1987 when she suffered a massive stroke in ICU following carotid artery surgery. … I became Patti’s spouse caregiver when she awoke Thanksgiving morning 1989 unable to walk and barely able to see or talk and by afternoon was hospitalized with her first major Multiple Sclerosis exacerbation.
Thanksgiving was about ‘caregiver awareness’ for us before it was ever designated. In 1994, the National Family Caregivers Association began promoting the week of Thanksgiving to acknowledge family caregivers. Eventually the entire month of November would become National Family Caregiver’s Month.
November is also designated Pancreatic Cancer Awareness Month. My Dad died of Pancreatic Cancer 15 years ago. I spent the longest night of my life holding him, talking with him and sharing “the time of angels” ... I have been there for the closing chapter of cancer. That’s the kind of awareness that just does not pigeonhole into a month.
It’s difficult not to notice the common denominators of long term spouse caregiving and cancer. Cause and effect? I seriously doubt it but then I’m left to pause and wonder if ‘the deadliest cancers я us’ isn’t becoming some macabre family tradition. More likely, spouse caregiving equals long term stress which does take a huge toll on the immune system.
To paraphrase Shakespeare from the Twelfth Night, ‘Be not afraid of awareness, some are born aware, some achieve awareness, and some have awareness thrust upon them.’
with us is not unlike the delicatessen scene from the movie “When Harry Met
Sally” after Meg Ryan demonstrates a fake orgasm and the older woman customer
remarks to the waiter “I’ll have what she’s having.”
voters look up from their computerized voting screen toward ours wondering why
theirs is not so entertaining.
because they are not assisting a voter with severe Multiple Sclerosis with symptoms
including legally blind and severe short term memory loss at the top of her
myriad of cognitive challenges.
just finished reviewing Presidential choices including third party candidates,
I turn to Patti and quietly ask her who she would like to vote for. … In a
booming voice one might normally reserve for yelling from the top of a football
stadium (because MS frequently lacks volume control) Patti declares “I think
they are all assholes!” … and dissolves into self-bemused laughter.
next to us laughingly remarks to a poll worker “How come my machine doesn’t
have that choice?”
and while having more fun than two people should in a polling station we do
or I should say I could cop out for us, and do a mail in ballot or any of the
other accessibility options but Patti prefers to participate in voting at local
polling places. Accessibility to us has always meant inclusion not exclusion. …
and if it can be enjoyable along the way than all the better.