unrequited caring

“Melancholy hearts flutter with unrequited care”

Restless by C Rossi-Kenyon

While caring may be unrequited the most important thing I must remember (because I can) is that for Patti it’s not a choice.

Progression of Multiple Sclerosis cognitive symptoms, including dementia like symptoms including memory loss, prevents her from dependable awareness, much less concern, about my health and well-being or anyone’s.

Progression of MS physical symptoms prevents her from physically caring for anyone (much less herself). 

Unrequited ‘love’, now there is something we all know about, but is love the same as caring. Who amongst us cannot tap that emotional reservoir of unrequited love? It can get crowded drinking from that keg of emotions sharing with yourself, Charlie Brown, and most of history’s romantic poets.

But what about unrequited caring?

What about caring but being physically unable to help? Trapped inside your body unable to help.

What about caring but being cognitively unable to help? MS is not the only disease with progressive memory loss. The Alzheimer’s Association estimates that there are 500,000 Americans younger than 65 with Alzheimer’s and other dementias. One out of eight people age 65 and older (13 percent) has Alzheimer’s disease.

My own diagnosis this year of lung cancer, surgery, and recovery rather dramatically accentuated all this. Yes, I find myself “tebowing” in gratitude for the care facility era of living with MS because unless reminded, including a brief refresher version, Patti remains oblivious in the now of the recent then. Patti was safe and unworried through my struggles – the way it should be.

Unrequited love? We can all rally around an anthem of she/he done him/her wrong. … Unrequited care? We can only imagine the care robbed by failing abilities of those who cannot remember what or who they care about.  

I may not be a smart man but it seems to me song writers and poets may have had it easier before modern medical science discovered it could prolong life but not the quality of living … and ‘somebody that I used to know’ was a choice and not progression of a medical diagnosis. 

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

cat shit cazy

Arriving to pick Patti up early on the morning of July 4^th from her care facility I was struck by the apparent contradiction of a laughing gregarious Patti and the progression of Multiple Sclerosis short term memory loss symptoms which had repeatedly erased repeated staff explanations for why she is up, changed, and dressed for an outing. “You’re all wingnuts!” according to Patti.

In route, experimenting with a question or two about my own diagnosis of lung cancer and surgery three months ago reveals she has no memory and/or resulting worry or concern.

Briefly I ponder the concept of memory loss and unrequited caring but decide that’s for psychobabblists over lattes.

Instead I decided to entertain Patti by sharing a recent revelation -  the secret to approaching the quarter century club as a MS spouse caregiver is … (dramatic pause)… I’m cat shit crazy.

I began my ramble by explaining that I have been reading about Toxoplasma Gondii in news headlines and found myself reminiscing …

I first heard of T. Gondii in 1987 when Patti was pregnant. Her OB/GYN raised the concern that some parasite thingamajig could transfer from cat feces to Patti to fetus (now known as our daughter Megan).  … With visions of the thingamajig from the movie Alien popping out of Patti’s stomach dancing in my head I had no problem assuming exclusive cat litter duty.

I just never realized that apparently the offer never ends kind of like offering to send peace keepers to Afghanistan.

Then after Patti was hospitalized with her first Multiple Sclerosis exacerbation in 1989 her neurologist also raised concerns about ol’ T. Gondii lurking in the cat litter because MS is an autoimmune disorder.

Bottom line I have heroically thrown myself on that grenade of the litter box over 9,000 times over the spouse caregiving decades and now apparently I am medically and certifiably cat shit crazy. – Explains everything!

“Explains everything … and more!”, Patti emphatically adds after catching her breath from laughing.

Curiously laughter seemed to reduce short term memory loss. Why not millions to study that instead of litter boxes? 

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

Despite MS, to Spite MS

How unique is this book? In the forward Jennifer Digman shares her research that there are 2,100 books on Multiple Sclerosis but only 5 about Multiple Sclerosis love stories.

How unique was reading this book? Because of MS symptoms Patti cannot read nor can she remember in the short term which in turn affects attention span. Reading it to her pieces of chapters at a time over the holidays was beyond interesting, at times outside my imagination.

At one moment I’m reading to Patti about Dan Digman who transfers his wife Jennifer from her wheelchair with the same one person unassisted transfer as I use for Patti except the guy has MS. Not only has MS but runs an 8K race in 43 minutes – damn, this guy is in far better shape than me and I do not have MS.

While Patti, who does have MS, makes skeptical sounds about a think positive snippet in one breath, laughs along with Jennifer’s take on something from their shared wheelchair view perspective in the next breath, and then abruptly decides she just wants to go to bed. MS attention span can be dizzying to deal with.

Spacing chapters are haiku poems by Judy Williams who also has MS. These capture Patti’s attention causing spontaneous comments and observations, a couple times leaving me to see the poem differently.

If ever I doubted it, this experience of reading “Despite MS, to Spite MS” with Patti has proven that Multiple Sclerosis is less a diagnosis and more a collection of Multiple Stories.

And, Now, We Pause for a Brief Commercial Message . . . Click “Despite MS, to Spite MS” to order.  A portion of the proceeds will benefit the National Multiple Sclerosis Society and Camp Courageous.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

We are … what we remember

Caregiving and Multiple Sclerosis can bump into semantic walls. Short term memory loss, cog fog, or dementia may be just words to some, but to others - them’s fightin’ words.

Yet MS symptoms can affect intellectual and social abilities. Sometimes this is easier to demonstrate as a caregiver through a thread of current events.

Patti surprised me Tuesday evening when I picked her up for an outing asking me about the Penn State scandal which I had read to her about on Monday. I try to make the time to read newspapers to her and ask her questions about the stories as an ongoing informal cognitive rehabilitation.

She never has recall over a day anymore, I was stunned. Yet before beginning a victory dance I realized that Patti is a Penn State alum and both long term and short term memory must be coming together in some kind of cognitive cauldron here.

Additionally ‘we’ had attended several football games together at Penn State's Beaver Stadium in the distant past. I am a U of Maryland alum and our respective universities had a football rivalry.

As a visitor I had always found Penn State a world unto itself. When 100,000+ people begin shouting in sync their signature shout and response cheer “We are … Penn State” it’s eerie.

Intuitively, now in 2011, I experimented with talk radio while driving. Needless to say the topic was the Penn State scandal.

Patti was so involved with the program I was captivated. Not only was she following it but remembering previous callers and periodically verbalizing her own two bits. Most impressive to me was her focus on the victims not the fall out. It was frustrating to see flashes of the person that was, yet discover she could not tell me what she had just had for dinner or where we were going.

Could this cauldron of long and short term memories keep breaking through? Picking her up after a 48 hr gap, Patti remembered nothing about it. It was all new to her.

We are … what we remember.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

remember when you remembered

July 20, 1985 it was 93°F (34°C) under sunny skies, ours was an unconventional wedding with outdoor ceremony followed by picnic reception - BYOCC (bring your own change of clothes)

26 years later it was 95°F (35°C) and well I guess we are still ‘unconventional’. Multiple Sclerosis has left only one of us still able to change their own clothes and only one can still remember.

26 years ago we specifically DID NOT promise to “love and honor … in sickness and in health, until death do us part.”

If you are trying to read anything into our story about vows and 21+ years of MS spouse caregiving - fugetaboutit.

We DID promise to “Love one another, but make not a bond of love.”

Maybe the story is best told through a wedding gift.

Largest on the gift table it was also the most baffling upon opening – a giant mixing bowl, 14” (35.5 cm) in diameter, 7” (17.8 cm) high it holds 9 quarts (8.5 l) and weighs about 8 lbs (3.6 kg).

Though 26 years later through Google, I now know it is a McCoy Stone Craft Pink & Blue Mixing Bowl #14 and to some a collectible though to us it remains just our ‘big bowl’.

People into symbolism will tell you a bowl is a symbol of nourishment, emptied and refilled over and over throughout life.

A big bowl is where a family works their practical magic, transforming ingredients into cookies, cakes, meat loaf, salads, etc.

More than ingredients also goes life; the good, the bad, and the ugly, laughs and sadness, hopes and fears, dreams and challenges. In that apparently empty bowl is the beneficence that turns people into family.

related entry: 25th wedding anniversary

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer 

summertime and memory is melting

“There ain’t no cure for the summertime blues” especially when living with Multiple Sclerosis. Research reports that memory and cognition melt in summer and not even air conditioning can help.

“cognitive scores were 70 percent lower among MS patients on warmer days — those with an average temperature of 66° F (18.9°C) — than on days when the mercury hit a mean of only 33°F (0.5°C)”

For MS Patients, Memory Melts in Warm Weather

Research was done by the Kessler Foundation in West Orange, NJ, “where reseach and program centers are linking science and grantsmanship leading to discoveries that are changing the lives of people with disabilities”.

While Jersey Shore tourism must be wondering how the Kessler Foundation missed the memo about ‘promoting’ summer, anecdotally our worst attempts over two decades to create MS family outings have involved hot weather.  Of course, in those earliest days the only research available to us was ‘trial and error’.

While MS changes everything, surviving is about adapting to change.

Walking, pushing, and rolling through the cool of a summer morning is not unlike enjoying an ice cream cone before it starts to melt.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

short term memory Multiple Sclerosis

“Problems with short-term memory” is one of those phrases that people from professionals to friends & family nod at or make murmuring sounds of consensus that it’s “common with MS”. Yet does anyone have a clue as to what exactly is short term memory, much less problems? Psychoscientists and psychobabbleists fill books on the conscious mind, short-term vs long-term memory, and primary vs active memory. Brits even offer a category of “dottiness” (amiably eccentric).

Long story made short, lesions in multiple areas of the brain, atrophy of damaged brain tissue, and short circuiting of nerves within the brain transmitting memories all can contribute to and confound memory problems associated with Multiple Sclerosis.

Recently I had the pleasure of sitting in on a memory therapy session at Patti’s care facility. Even when the session began with the set back of Patti being unable to remember the therapist’s name, they stayed with the friendly routine of memory exercises, often interrupted with laughter. Conceding the obstacles of MS and memory, the therapist remarked that while Patti is not her most successful patient she is her most enjoyable.

There is no cookie cutter MS patient and recommended encouragement in mentally stimulating activities like crossword puzzles, word games, and regular exercise are obviously thwarted by Patti’s other MS related challenges of visual impairment (legally blind), non-ambulatory and dependency on others. As are most low tech and high tech tips and tricks for helping short term memory.

Observing therapy it reinforced my years of intuitive involvement of Patti in outings of the minutiae of life, from errands to family to fun. I always believed that even though dependent it should not preclude her from remaining engaged. Though I concede this is caregiver time demanding.

Not unlike physical exercise the brain needs a work out routine. Memory in MS is so much more than forgetting why you walked into a room. It ripples into self-mage, concentration, reasoning, word finding, conversation, and safety.

When it comes to memory, maybe it’s less about Freud and more about RuPaul:

“You better work it, girl ... Work, Sashay! Shante!” 

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

let them eat memories

Memories paradoxically both bond and separate you the longer you are a caregiver, at least when Multiple Sclerosis progression impacts cognitive abilities.

With our daughter’s birthday looming, Patti had not remembered, could not remember the day, nor could guess her age after multiple attempts. How? Why? -  What difference does it make?  It seemed better to just enjoy a fun time in the now creating an entertaining outing to include Patti in preparing for our daughter’s birthday.

"What you see and hear depends a good deal on where you are standing; it also depends on what sort of person you are." C.S. Lewis

Earlier asking our daughter, she had requested sushi quickly adding how about carry out and eat at home as it’s easier for Mom. True, and as I often stop to remind myself it is ‘their’ relationship and shared memories, not my perception of it. Megan only had 18 months of a ‘traditional mother’ daughter bond before severe disabling MS changed our family dynamics.

Rolling on in the now, we were blessed by nothing but the right sort of persons. Yes both the bakery and sushi bar were wheelchair accessible but wheelchair friendly is about the people behind the counter.  In both places, without asking or hinting, whether baker or sushi chef, they saw with more than eyes what was going on and brought selections around from display cases holding them for Patti to see and empowering her enjoyment of involvement.

Memories fuel an entire industry - inspiring poets and songwriters, employing practitioners of the psychobabble arts, and both haunting and comforting us.  Yet when memory loss enters the equation are any of us prepared?

Only in perspective can moments get poignant, when eyes smile in the now “sure, they steal your heart away.”

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

through MS 'symptom D' glasses

Not unlike 3D glasses at theatres sometimes it’s easier to ‘see’ living with Multiple Sclerosis when moments in time such as an outing to the movies are viewed through “symptom – D” glasses.

Getting ready is all about non-ambulatory which means transfers and assistance with dressing and changing Depends. Incontinence is best understood in terms of continence. How often do you visit the commode? Now just replace the word commode with - transfer from wheelchair to bed, change Depends, and transfer from bed to wheelchair.

Once ready to go, it’s onto wheelchair accessibility.

Considering all that’s involved with optic neuritis, I have my suspicions about 3D glasses, though this outing is 2D and visual impairment is more about proximity of accessible seating to the screen.

Whether jerky or simply lack of muscle coordination, spasms and/or spasticity means no bucket of popcorn goes on Patti’s lap. I hold the popcorn between us resting on her wheelchair rim.

Most dangerous of symptoms is dysphagia. Short circuiting of the muscles involved in swallowing can equal choking under the best of situations. Sitting in the companion seat at a theatre is the equivalent to the lifeguard chair at the beach.

Unlike garden variety fatigue, MS fatigue is more severe, a sudden lassitude.  In Patti’s case the odds increase as the day wears on, therefore matinees are preferred over evenings.

Sometimes you get a cocktail of symptoms. Dysarthria is all about the short circuiting of nerves controlling the muscles involved in speech. Pseudobulbar affect is all about inappropriate laughing/ crying.  In other words there is no way Patti is going to turn to me and ‘whisper’ something about the movie. More likely she may abruptly and unintentionally loudly interact with the movie dialogue.

Here again less attended matinees are helpful though I confess I’ve grown to enjoy Patti’s interactive MS dimension to the movie going experience.  

Ahhhh and alas there is always memory loss. Tucking Patti into bed at her care facility after our outing to see “Rango”, the nurse asks her where she went. “To dinner at my parent’s house!” J

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com 

videos: www.youtube.com/daddyleer

Memory loss, valentines, Disney hell or heaven

Patti is subject to a unique media and social barrage of Valentine’s Day hype in that her short term memory loss repeatedly wipes the old etch-a-sketch in her head clean then refills it and on and on.  Valentine’s Day, for personal reasons is not a favorite of mine, yet as a caregiver I try to take a path of stoic indifference to my own feelings. Whether Multiple Sclerosis related or ‘selective’ memory loss, we both arrived at the same point - any excuse for an outing is a holiday.

                                    

Restaurants may be accessible but on a night as crowded as Valentine’s Day a wheelchair may as well be a tank in a street demonstration.

So we decided why not eat desert first. Stopping by Helena’s Chocolate Café and Creperie in Carlisle, PA for a chocolate fix we found it surprisingly not crowded and ended up enjoying a chocolate dinner. Chocolate and strawberry crepe washed down with hot dark chocolate for Patti and a chocolate crepe and café mocha for me. As the crepes were prepared one at a time we were easily able to appear to share our food (taste this) rather than me help feed Patti. 

                      

Telling Patti about a news story of a guy suing Disneyland for being stranded on “It’s a Small World” ride, Patti laughed and laughed as she ‘remembered’ that pre-MS the same thing had happened to us, except at Disney World no one was evacuated and the dolls just kept singing and singing.

Stranded? No way! I was in Disney Heaven clapping and singing along with the dolls while Patti and others were in Disney Hell ready to tear their brains out.  Thank God there were children aboard as I had a growing suspicion my boat mates were considering throwing me overboard.

As we laughed over the memory, I thought of the decades since and well …

“it's a world of laughter, a world of tears

its a world of hopes, its a world of fear

there’s so much that we share

that its time we're aware

its a small world after all”

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com 

videos: www.youtube.com/daddyleer