Skiing with Multiple Sclerosis Dementia

Caregiving for a spouse with Multiple Sclerosis dementia can take improvisation on my part.

Yeah I’m sure someone somewhere has written a ‘caregiving for dementia for dummies’ guide but I tend to go about caregiving intuitively. That’s how it started a quarter century ago,  why change?

Plus MS unlike other diseases associated with dementia can have such individualized physical progression; it defies a cookie cutter approach.

Picking Patti up today following yesterday’s snowfall she began talking about skiing. She has done this before following snow storms. ANYTIME Patti initiates a conversation I believe it is to be encouraged as she rarely initiates an extended conversation.

Of course here enters the dilemma – I was not part of Patti’s life when she skied. I have gotten better at faking it because I remember previous conversations and I care enough to have visited where she skied to get the lay of the land, the lodge, the slopes but regardless I’m extending a conversation that I was not part of in the real world.  I’m careful never to interject myself into her memories but rather to help her with them as long as she tries to recall an association with freshly fallen snow.

She shares, she remembers, she laughs and then it’s gone and back to now. I’m not sure that it is right, but I don’t believe it’s wrong.

Patrick Leer

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

care facility multiple sclerosis caregiving

Multiple Sclerosis and Dementia

A cortical variant of Multiple Sclerosis characterized by progressive dementia may be more prevalent than previously suspected and may be an important factor in nursing home admissions in this group of patients, or at least a Texas A&M University study back in 2005 concluded.

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. 

Patrick Leer

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

care facility multiple sclerosis caregiving

The First Christmas of Overtime

Following Thanksgiving holidays I resolved to change. “Insanity: doing the same thing over and over again and expecting different results,” is never truer than dealing with dementia. My wife Patti’s Multiple Sclerosis disabilities, specifically dementia, is never going to allow her to remember any family holiday gathering no matter how hard I try over and over again to involve her and it does get harder holiday after holiday. 

… On the other hand I will remember and more importantly our daughter will remember. … Rather than ‘expect’ different results it was time to ‘create’ different results. 

The genesis of this Christmas Day trip was to create a memory of skating together on the Rink at Rockefeller Center for my daughter and myself. 

The bottom line is that memories of a fun time together are priceless in a year that included not just the 23rd Thanksgiving since Multiple Sclerosis entered our family but me flat-lined for 20 seconds, diagnosis of lung cancer, and successful lung cancer surgery.  IMHO ‘lung cancer survivors’ are not just the person with the diagnosis. 

Sooo with Patti safely asleep and cared for in her care facility, our adult daughter joined me taking turns driving and storm running for 200 miles through the night with the Christmas Eve winter storm arriving in New York City shortly after dawn. ...  

The First Christmas of Overtime

P.S. Picking Patti up from her care facility for an outing today and after pushing her past mounds of plowed snow, I asked her what holiday had just passed, ... She thought a moment and responded, "Halloween!". 

Patrick Leer

Health Activist:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

care facility multiple sclerosis caregiving

Dear Santa, please send a cure for Multiple Sclerosis

The other night we watched a TV commercial for some speech software as a young woman gushed on about how it changed her life as she could now type while driving, walking, etc. just by talking.

The young spokesperson had no noticeable disabilities except lack of time in her exciting life to type.

I doubt she was even born by the dawn of such speech technology for people with disabilities. From Microsoft to Verizon those early geeks could not have been more patient if not even fascinated with Patti’s Multiple Sclerosis speech that absolutely baffled the earliest software.

Try as they may the spawn of Gates and Jobs just never have kept the promises of Hanna-Barbera, or Gene Roddenberry when it comes to the technology we all were ‘promised’ in the future.  Where are our robot maids or aerocars of the Jetsons?  I still step outside once a day, open my flip phone and when no one is looking whisper "Beam me up, Scotty" … but I’ve never been transported.

Instead we are inundated by gadgets while not a single disease has been cured since polio in the mid 1950's. 

Dear Santa,

     Please bring a cure for Multiple Sclerosis for Christmas. My wife’s physical and cognitive progression only increases and now I have lung cancer. We have never asked before in 23 Christmases living with MS, either we were too busy being parents or praying for someone else. We are running out of time. Time is neither our friend nor that of any family living with MS

Big Pharma does not want to cure anything, time is profit to them. 

Earlier this year the bad elves at NASA ‘punked’ Mars by spending a zillion dollars to send a state of the art computer/lawnmower. Maybe you could simply swing by and pick it up. Put it under someone’s tree to start working on a cure for MS.

Speaking of those bad elves at NASA Santa, whatever happened to jet packs? I saw James Bond and Will Robinson using them in the 60’s.

I know you can’t grant every wish, but if you can’t send a cure for MS for this Christmas could you find two jet packs for us. Hovering around together would be so cool compared to the over 5,000 miles (8,000 kilometers) of push and rolls through the decades.

Thank you and "God Bless Us, Everyone"

Patrick Leer

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

care facility multiple sclerosis caregiving

they say its your birthday

my original 1st birthday

Today was a bit more than just ‘another’ 39^th birthday it was also my 1^st birthday since successful lung cancer surgery.

I did not even know such birthdays were possible almost a year ago, so yeah this one was ‘special’.

Started the day with a brisk Birthday 5K Walk that started in morning fog yielding to beams of sunlight before a rude rain cloud blew through with a finale of windy rain.

Of course it was also my 23^rd birthday as a Multiple Sclerosis spouse caregiver and sooner than later any day has got to be viewed through MS 'symptom D' glasses.

Sooooo stopping by Patti’s long term care facility to include her, I tried to coax out of her MS dementia any recall of my birthday; after all I should exist in long term memory.

Questions about month and or date failed to get anywhere but finally the 18^th rang a bell and coupled with ‘birthday’ she at last offered that it was her birthday’. (Actually that is September the 18^th but remember I've been a MS caregiver for 23 years – what’s it matter who’s birthday it is.)

Heading home for dinner and opening some presents I have to credit our daughter for quick thinking as she improvised that someone must have misspelled Patti as Patrick on the cards. Patti enjoyed opening her cards and presents and just as quickly lost them in short term memory loss … where I will magically ‘find’ them.

After transferring and tucking Patti into bed at her facility I headed off to treat myself to an evening showing of “The Hobbit”. 

Mentioning it was my birthday I was pleasantly surprised to discover my admission was free!!! I settled down with a bag of popcorn and sat back to enjoy a story I had not read since college when the only birthday I cared about was turning 21. 

Patrick Leer

BLOGS:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

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luminaries, a lake and Multiple Sclerosis

As if a push and roll outing around a lake surrounded by 400 luminaries and a lighted floating Christmas Tree was not enough … 

“With the economy the way it is, and how things are going in the world today, we wanted to give back to our community.” … “Everything is free”

Christmas by the Lake at Children’s Lake in Boiling Springs, PA felt like falling into a Currier & Ives lithograph when members of a ‘town band’ arrived to play holiday music and a high school choir to sing Christmas carols. … all that was needed was snow!

Of course in our story everything revolves around Multiple Sclerosis.

MS related dysphagia restricts even a free menu of hot chocolate, coffee, hot dogs, homemade cookies, pumpkin bread and chestnuts roasted on an open fire. However with some teamwork and verbal cues we were able to enjoy hot chocolate and homemade cookies. I suspect I enjoyed the roasted chestnuts more than Patti. Ohhh how I once loved bags of roasted chestnuts on the streets of NY.

You may notice the mittens pictured on Patti. Chronic fidgeting has been, and is, one of the more frustrating of her MS cognitive symptoms. This long ago torpedoed the catheter era and continues to confound transporting her when she repeatedly disconnects her seat belt while I am driving and need to stop to reconnect.

Wearing her mittens usually keeps her from manipulating most objects and endlessly putting the mittens on and off it seems to satisfy her fidgeting.

Though having mittens on this balmy sunset, 48°F (8.9°C), was fortuitous as they were ideal for holding the hot chestnuts until they cooled enough to eat and for holding the pictured luminary for a creative photo op.

Accessibility in general can be a challenge especially after dark. Fortunately any time a town closes streets to traffic for a community event it exponentially increases its accessibility rating.

Did I mention “free” horse drawn carriage rides? Probably not, MS fatigue eventually trumps all … sooner than later all Patti really wanted to do was go to sleep. 

Patrick Leer

BLOGS:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

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Health Activist Contests

To shill or not to shill, that is the question …

 “…someone in your community has taken the time to draw attention to your efforts during 2012 and wants to make sure you are recognized.     You have been nominated for the Advocating for Another Award in this year's WEGO Health Activist Awards!...”

Personally, I would bet a dollar that everyone who has a screen name received a similar notice. 

I always worry that such hoopla about who is best could deter that new caregiver or person in need from sitting down and sharing. In my opinion the blogosphere is not about ‘mavens’, self-appointed experts, ‘gurus’, or ‘gated communities’ but about people sharing their stories openly which in turn can be searched by others.

Admittedly I am just an old dude and I remember that near magical moment when someone like me, a Multiple Sclerosis spouse caregiver, appeared in a note in something called a Prodigy newsgroup bulletin board back in the primal goo of the genesis of something called the Internet. … OMG! I was not alone. It was empowering and neither of us cared who was 'better'. 

However let me also say - more power to the youngens with WEGO. Creating jobs for themselves in this economy is worth praise in itself!  … And don’t get me wrong, if their contest can connect a participating health blogger with a winning swag bag of free meds from Big Pharma and some cash – shout it loud! I will even give you an Amen! Incentives of travel to conferences, etc - well that's appealing to the young, beautiful and healthier but may not work for long term caregivers nor those with severe physical or cognitive challenges. 

So for me, at least in the moment, I will take the Shermanesque dodge here and say “I will not accept if nominated and will not serve if elected” J

I am just an old dude tryin' to make a livin' and doin' the best I can. Pushing Patti's wheelchair after 23 years of spouse caregiving apparently just was not enough … so this year we tossed in my own lung cancer odyssey.

Activism? Isn't that just another word for the wheelchair tread marks and footprints we leave behind.  

Patrick Leer

BLOGS:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

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If it ain’t broke don’t fix it

While this phrase has certainly evolved into a down home cliché about sufficiency I personally have found that it does not translate well into advocacy in the care facility era.

Joint contractures are a good example of this challenge. Contractures are a preventable source of excessive disability but this is Multiple Sclerosis and muscles act weird, dysfunction begats dysfunction. Believe me not everyone, including myself, is on the same page for a boatload of reasons.  

Sometimes advocating is about trying to prevent things from worsening.

Sooooo it ‘ain’t been broke’ in so long I got curious and dropping by early to pick Patti up I found her in physical therapy room, strangely laughing while doing her assisted knee contracture exercise instead of cursing and swearing her traditional therapy language. Therapist shared her ‘numbers’ reflecting Patti’s improvement as I shared my anecdotal evidence that I could not even remember the last time she did not extend her legs when I transferred her.

In talking we discovered my own health issues had apparently played a beneficial though unintentional role. Just before my lung cancer surgery the time of day for Patti to wear her braces was changed to early evening. Laying in bed Patti was unable to tinker with braces making then ineffective as pictured to the left. So evening LPN’s began applying braces around 7 PM and removing each night at 11 PM when overnight shift arrived. Unencumbered overnight sleep was as important as the 'low-load, long duration stretch'.

Prior to my lung cancer surgery I would often return Patti later than earlier and was working on my average of 3-4 outings per week. The problem was that by doing so I was short changing the duration of ‘low-load, long-duration stretch’. When our daughter stepped in during my recovery from surgery to pick Patti up and bring her home for visits she improved two critical things. She reduced the outing equation to 3 and since she does not physically transfer Patti herself learned from staff that they usually transfer Patti to bed after dinner approximately 6:30 PM. A timetable which not only is MS fatigue friendly and Patti prefers but enabled a regular nightly schedule of 4 hrs of low-load, long duration stretch.  

Sometimes advocating is also about learning better ways to accomplish the same thing.

previous related entry: contractures Multiple Sclerosis

Patrick Leer

BLOGS:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

care facility multiple sclerosis caregiving

sometimes you have to turn it up to '11'

On a sunny 70°F (20.9°C) afternoon in December in South Central Pennsylvania I picked up Patti from her care facility for an outing, rolled down the windows and cranked up the radio to '11'. (As Nigel Tufnel taught us all in ‘This Is Spinal Tap’, sometimes 10 just won’t do.)

With Spring Fever in December we headed off in search of the legendary Red Devil. First stop, Dickinson Field alleged home of the Red Devils or at least that is what it says on a sign.

After a most enjoyable but futile push and roll Patti was laughingly remarking something to the effect “the damn little bastards probably can’t read and don’t know they are supposed to be here” when …. poof she was gone.

Being a super sleuth I followed her wheelchair tracks to the baseball dugout where I found her encaged in laughter and after all it certainly was baseball weather.

If not here then a graveyard was the next logical place to search for that Red Devil. I could not find either adjacent parking or an accessible way in - well, except for the hearse entrance. Hey, it was an ‘eleven’ day so in I drove, parked and deployed the ramp on what appeared to be unused ground.

Consulting first with the sculpture I have often admired driving by Patti decided she looked like a stone cold creepy thing and well, we got no more information from her.

Next we headed deeper into the oldest section where graves date into the 1700’s and the drooping branches of ancient evergreens trump Hollywood. Old grave markers were often as much about wit as dates and soon we were laughing along with 250+ yr old witticisms. … but no closer to finding the Red Devil though totally enjoying our outing.

Returning to the van I remarked to Patti “those look like muddy footprints going up the ramp! …”

“… and those annoying two were never heard from again.”

The End,

The Red Devil

BLOGS:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

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first snow push and roll

Maybe it’s the combination of reading other Multiple Sclerosis related blogs and the dawn of the 23^rd year of our own story of living with MS but my heart goes out.

Maybe Guns N’ Roses was right, “... Nothin' lasts forever … and it's hard to hold a candle in the cold November rain …”

Others 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 any easier.

Whatever, 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 facility.

MS 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 skiing.

Then it 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 verbal cues.

On the 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. 

Patrick Leer

BLOGS:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

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What is your caregiving 'prime directive'?

Any Trekkies out there? Any ‘normals’ remember the Prime Directive, Starfleet’s General Order #1? (Trivia answer at the end)

The 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?

Mine has always been, is and I suspect always will be Patti’s ‘safety’.

Our 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 arms.

Yes, 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.

• ·      MS 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.
• ·      Transferring 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.
• ·      While 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.

Bottom line – did Patti enjoy the time? ‘In the now’, yes!

Though MS 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.

And for 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?

Patrick Leer

BLOGS:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/ 

P.S. As 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. 

multiple sclerosis caregiving care giving

Kiss Off M.S. 80's style

A friend 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.

Time 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.

I’m 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.

Though 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.

I find 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. 

Patrick Leer

BLOGS:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

multiple sclerosis caregiving care giving