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.
Wednesday, September 27, 2006
Caregiving: PATF press conference
Sunday, September 24, 2006
Caregiving Metaphysics Parenting
Parenting ‘competed’ with caregiving for my attention that morning of Patti’s first MS exacerbation and every morning in the years to come.
Patti could never again safely hold or carry our daughter, never changed another diaper, and couldn’t read to her … you get the picture.
On the other hand, I was blessed with an opportunity denied to most males. Raising a daughter as the nurturing parent and sharing the wide eyed wonder of childhood was beyond priceless.
At first I was overwhelmed. With confidence came the relaxation to enjoy childhood. I may have learned as much from playing with Barbie’s as from the world’s great philosophers.
There has been some debate over which of us would grow up first Megan or me. The first time you grow up everyone is in such a rush.
There were some things I never saw coming such as the first menstrual bleeding. Hey! I’m a guy raising a daughter, when did she get to be a young woman?
I would do the single digit years again any time any place. The teen years, once is enough.
Parenting & Caregiving also had a dark side and eventually I could no longer work full time. With Patti’s progression, bladder and bowel incontinence plus outbursts of emotional lability were potential nightmares with Megan and her friends playing at the house after school. There is only so much a young child can do for a parent. I had to be there. Again, it’s about choice. I chose family.
We worked to keep the family together. We began to divide time up between ‘family activities’ and ‘able bodied activities’. After all Megan would have to live in an able bodied world. So many things can only be learned by doing them.
Megan, at age 16, and we as a family faced her Mother’s admittance to a 24/7 care facility. That’s more than unusual at an age when most kids are trying to fly under the radar.
Home caregiving rarely stands alone. In ‘our story’ parenting was an equal partner from 18 months to 18 years.
Tags: caregiving
Tuesday, September 19, 2006
Caregiving Metaphysics Gender
Over the decades I’ve learned the hard way that being a guy works against you but can be overcome.
Besides the oodles of email, I’ve also coached or counseled new caregivers through our local NMSS chapters.
Overwhelmingly it is the male caregivers who get injured physically and or emotionally and begin to doubt themselves or raise concerns in the person who needs them.
Our American male culture is based on the cowboy mythology.If there is a person in need the hero rides in guns blazing with absolutely no thought of themselves or collateral damage.
I’ve been lucky so far with only one hernia surgery. In the early years for a family outing I would assist Patti into the car, put our daughter into her car seat, then dead lift the scooter into the back. Being a ‘manly-man’ I was not about to disassemble or use a lift to get Patti’s scooter in and out of our vehicle. … Enlightenment followed surgery.
YOU MUST TAKE CARE OF YOURSELF FIRST OR YOU ARE OF NO USE TO ANYONE ELSE. Instead of counting to 10 I repeat that to myself constantly before beginning a caregiver action.
Over the years and Patti’s continuing progression I’ve learned to check the cowboy in me and learned for example to “safely break falls” rather than try to overpower and stop a fall. After all, able bodied couples don’t think twice about tumbling to the ground for fun.
Resist the male urge to overpower problems. Look to creativity and a wider perspective.
Learn to develop and trust intuition. That’s tough for guys but critical for longevity in caregiving.
Homemaking skills can be weak to non-existent in many males. You will loose traditional male bonding time when you begin to discuss laundry detergent instead of sports. Don’t worry you’ll find a way to have Tide and Cheer compete. … A vacuum cleaner IS a power tool! … In the kitchen, remember the world’s great “chefs” are men.
Above all caregiver cowboys do not charge in with those proverbial guns blazing, you’ll unnerve the person you are caring for and most likely hit yourself with a ricochet. Then who is left caring for whom?
… Or don’t ask for directions, believe me I understand. You too can learn the hard way – enlightenment follows surgery.
Tags: caregiving
Caregiving: birthday
Patti’s birthday was Monday and she got it into her head that she wanted to go to a casino. That “mountain momma” West Virginia was the nearest, just 80 minutes to Charles Town.
She had a grand time. Obviously attended assistance is required but that didn’t stop her enjoyment of slot machines of spinning fruit, talking leprechauns, sliding seals, and enchanted forests.
Dinner was excellent and after 4 hrs Patti was “ready to go to bed” <grin>. Surprisingly we had lost only $22, it costs more than that for a movie and concessions.
Friday, September 15, 2006
Caregiving: scootering in fog
No ‘gypsy’ closet today, I reconfigured the van with Patti seated in her wheelchair and loaded in her scooter.
We were doing some all terrain scootering in a local park. Just before twilight a bank of ground fog began to form over a meadow.
The MS daredevil gave it a look …
And charged right in riding around in the fog …
When the fog cleared Patti was still there though headed in the opposite direction. <grin>
While her scooter has a beep beep sounding horn, I guess a proper fog horn could be in order!
Thursday, September 14, 2006
Caregiving: gypsy closet
Sometimes “living with MS” can yield an actual advantage. Our wheelchair accessible van has a lowered floor and no middle seating section. So with a little creative rigging I discovered I could create an actual walk in closet on wheels.
With Fall sneaking up, our daughter needed some clothes from home. Rather than try to figure out what she wanted I just loaded all the clothing from her closet and dresser into the van and brought her room to her. She could just step into the gypsy walk-in closet, take what she wanted, and the rest went back home.
She was only expecting some requested items, but after the surprise ended up making a couple trips up to her dorm room. <grin>
… and it was great to visit over a dinner of Shepherd’s Pie at a local Irish Pub.
Monday, September 11, 2006
9/11 Anniversary
10 weeks after the 9/11 terrorist attack on New York City our daughter performed in the Macy’s Thanksgiving Day Parade. As the first major NYC public event in the post 9/11 world, that Macy’s Parade was overwhelming with anxiety over alertness yet at the same time overpowering with the spirit of togetherness, pride, and resolve that swept this country. Pictured is a NYFD firehouse off Times Square that lost 15 firefighters responding to the attack.
In Spring of 2002 we paid our respects in person to the hallowed ground that once was the World Trade Center. Letters, cards, and children’s drawings encased in plastic from families to loved ones lost in the Towers wallpapered the church fence across the street. You just read and read and read. You either cried or fought back tears. Total strangers hugged and supported each other. I’ve never experienced anything like it. … Standing sentinel over the crater and grave for thousands stood a cross of steel created by the collapse.
On the 1st Anniversary of 9/11, Megan and I boarded and safely traveled on an airplane. Waiting in the airport for takeoff, TV’s droned on with non-stop news coverage replaying the events of the previous year and ‘talking heads’ unending babble about how terrorists might mark this 1st anniversary. I feel for the thousands traveling by air today and the annoying speculation of the ‘talking heads’.
My heart goes out to those families that left those notes and children’s drawings to loved ones lost. Their love and pain will never be forgotten.
…………………
How we as one family lived 9/11/01 was shared a couple years ago in 9/11.
… and sometimes it pays to hang on to pictures like this one from January of 1998 taken at sunset from the observation deck of the Empire State Building. Our daughter will never be age 9 again and neither will the lower Manhattan sky line ever look as pictured.
Sunday, September 10, 2006
Caregiving: processing change
This is also an excellent example where family MUST stay involved as medical advocate even after admittance to a care facility. Professionals would soon begin to tinker with either her anti depressant or her synthetic thyroid medications. It would, after all, be a logical and ‘easy’ attempt to find a solution.
MS cognitive dysfunction impairs her ability to express feelings and emotions. Talking with the nursing staff I kicked around the idea she may be trying to process our daughter going to college. Parents with able bodies and minds experience anxiety and loss as they adjust to this passage. The same process is there for Patti except cognitive dysfunction can leave so many loose ends disconnected and confused.
I focused a series of outings to replicate activities we often did that would include Megan. For example, with the remnants of “Ernesto” falling we headed to ‘our’ ice cream parlor to pick up a hand packed pint of ‘Deer Tracks’, the favorite flavor of Patti’s and Megan’s.
Memory loss and confusion symptoms work against lengthy or deep chats so I’d take the opportunity to chat in brief conversations about Megan attending college. … During one such outing, our daughter called on the cell phone on my belt. (Sometimes you just get lucky!) … The call really lit Patti up. … Handling any telephone is physically difficult for Patti, and it takes an “attended” call to be successful. Cognitively no phone call will last long; the process just confuses her too much. Of course, the fact that my cell phone "meows" instead of rings amuses and confuses not only Patti but most people. <grin>
Bottom line is that the cluster of lethargic days faded away. … The last two mornings changing temps have created thick ground fog which clears as the sun burns through. Fog always helps me to grasp cognitive dysfunction except with this symptom the fog doesn’t burn away. You wander in and try to help.
Thursday, September 07, 2006
Caregiving metaphysics vs philosophy
My “re-education” ironically began turning to philosophy even though I stubbornly refuse to label my new thinking a ‘philosophy of caregiving’.
Hey, I was a 30 something American male! In the “new age” USA of the late 80’s and 90’s, “what about me?” thinking seemed to surround me. The increasing isolation of caregiving was confusing.
I knew I had to push thinking about “me” into the background. I became intrigued with the Roman Stoics trying to pursue a path toward a Stoic indifference to my own existence. “Trying” is the operative word.
If harmony could be achieved by balancing a conscious “indifference to my own existence” with the demands of caregiving and parenting that certainly seemed a path worth exploring.
It sure beat the despair and loneliness that swallowed me each night when the day’s tasks were done.
Always hearing words like handicapped or disabled started to rub me the wrong way. What Patti was going through and we were going through as a family was not “dis” anything. In Friedrich Nietzsche, I found encouragement reading that tragedy gives us nobility, power, and heroism.
“Life is a fight with fate as well as passions,”
practically became a mantra as the years rolled by.
It was refreshing to hear that the “struggle” itself was noble rather than the stereotypical American view that it’s all about achieving success.
I dusted off a life long fascination with Henry David Thoreau. Half a dozen times in my life, I’ve made “pilgrimages” to Walden Pond. Pictured I’m hanging out with a statue of ol’ Henry when I took Megan for my most recent pilgrimage.
On my first visit as a parent and caregiver, we skipped stones across the surface of that transcendental eye of the universe, Walden Pond, and found fresh meaning in the often quoted line from the conclusion of "Walden".
“If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away."
Caregiving is unquestionably the beat of different drummer.
Choice unendingly stalks the caregiver. Feeding my mind helped, and seasoned the recipe for my gumbo metaphysics of caregiving.
Sunday, September 03, 2006
Caregiving metaphysics outline
How many people go to bed expecting to awake to a different world in the morning? … Now, just hold on to that thought for a couple paragraphs.
Back in the Spring, I started talking about my recipe for “gumbo metaphysics” that I’ve learned through 20 years of “living with MS in our family” as the spouse caregiver in Gumbo Metaphysics Part 1.
That first stage of “accepting” caregiver status mainly was about “defending” my family. I thought like a defender.
That mindset was not going to work for the second and far longer stage of caregiving.
Plus the onset of Patti’s disabling MS symptoms were so dramatic and severe that all traditional family “roles” where immediately swept into a maelstrom.
How dramatic? - Overnight! … and that brings us back to my opening question.
With a flair for the macabre, MS chose Thanksgiving morning 1989 for this transformation of our family.
I know this may sound like a plot you’ve heard before, especially if you’ve read Kafka’s “Metamorphosis”. Except that works of fiction can be put down and read at your convenience.
Unlike fiction, I could not simply “put down” the reality of our then 18 month old daughter and Patti who had awoke unable to walk, see, or even talk. … We went to bed an able bodied family.
Yes, we too had heard that MS is ‘not supposed’ to be like this. … Rule #1 - Multiple Sclerosis is the proverbial 800 lb gorilla and does whatever it wants.
Whatever I thought life was about needed to evolve immediately. In our story parenting ‘competed’ with caregiving for my attention that morning and every morning in the years to come.
I needed to ‘think’ differently and fast. The other option was to run, and that certainly crossed my mind.
The US Surgeon General’s Office tells us that the average length of time spent on home caregiving is 8 years. This dual stage of single parenting and home caregiving lasted almost 15 years before the 24/7 care facility era began.
In a series of entries to follow I plan to try and share my “re-education”, through such topic thumbnails as parenting, faith, homecare, economics and our eventual need for a 24/7 care facility.
Ours is a story about life, not death. Caregiving for a progressive chronic illness such as MS is not the same as the palliative care of a terminal illness. Our story is about one family trying to “live with” MS.
(to be continued)
"To cure sometimes, but to comfort always"
Dame Cicely Saunders
Tags: caregiving
Wednesday, August 30, 2006
Caregiving: bureaucracy & free thinkers
Yesterday we renewed Patti’s Pennsylvania Photo ID. In post 9/11 America whether you drive or not you NEED an official photo ID.
Any such collision with the bureaucracy of the able bodied is always interesting. For example, Patti cannot see far enough to “please look at the red mark on the camera and smile if you like”. My favorite was “Please sign your name WITHIN this box on this card” to which Patti responded “What card?” <grin> Everyone must maintain patience and a sense of humor.
… and as noted in another caregiver journal, surprisingly this motor vehicle satellite center also had NO designated accessible parking. We used a grocery store’s accessible parking about a block away.
In Pennsylvania you also have the option to take care of voter registration at the same time. Confirming her voter registration I had to smile, our family of three includes one Democrat, one Independent, and one Republican. “Living with MS” has obviously created an environment of free thinkers <grin>.
Friday, August 25, 2006
Caregiving: Writes of Passage
Our daughter launches her life,
Moving proudly into the Universität.
Walking parents as ‘couples’ surround me.
Thousands and I can’t see a wheelchair.
Mom’s not here, safe, maybe aware.
When did reality become the frontier?
Daddy travels West, yep, there’s a sunset.
Empty home? Not if you ask the cat.
Caregiving: scootering
Caring is more often than not intuitive. Physical and cognitive symptoms can easily intimidate you if you only look at cause and effect.
Medical professionals sometimes seem to hang an albatross around their own necks with their dependency on empirical evidence. Quality of life is an entirely different fight than medical treatment.
For example, “scootering” or going for rides on her electric scooter for whatever reasons empowers Patti and makes her FEEL better.
Patti is legally blind, easily confused, and quickly forgets what she is doing. These are not logical credentials for operating an electric scooter.
It falls on me as caregiver to find a way to make it possible.
City Island is a mile long island in the middle of the Susquehanna River. It is many things to able bodied people, however above all it has a road (closed to the public) that encircles the island. Here on non-peak times Patti can roar away without risk of running into crowds of pedestrians or off a narrow sidewalk.
On narrower sidewalks or paths I have to walk along side her and operate her scooter controls. This not only takes away the empowerment of scootering but invites outbursts of frustrated emotional lability.
Some parks can be OK but even grassy fields have the potential of holes, rocks, etc that she is unable to see and can abruptly halt the scooter, risking catapulting her out.
Progression of cognitive symptoms has lessened her ability to respond correctly to verbal cues, such as “veer right”, etc. Now I often use a more mechanical variation of “running with the bulls” for directional help, “Patti, just drive toward my voice”. … and prepare to dodge the oncoming whir. Charging at me for a target seems to add to Patti enjoyment <grin> and keeps me limber.
It's doubtful a medical professional would endorse such behavior but the bottom line is it empowers Patti and improves the quality of her life. Feeling good, I believe, is good medicine. (Unless of course, I dodge the wrong way <grin>)
Thursday, August 24, 2006
Caregiving: financial competency test
Financial Competency Test for Dementia Patients Unveiled
BIRMINGHAM, Ala. A team of UAB doctors has developed a 25-minute test that physicians can use to determine the competence of patients to handle financial affairs….
… patients lose arithmetic and other basic money management skills, and the ability to make both complex and simple financial decisions.
"They also become highly vulnerable to financial exploitation by others."
"The findings suggest that financial capacity first becomes impaired in the MCI (Mildly Cognitively Impaired) period, ...”
We learned this lesson the hard way over 10 years ago when Patti quickly ran up a couple thousand dollars of QVC charges on our VISA and couldn’t even really remember what she had ordered, and did she even get delivery.
It was a shock and a wake up call about cognitive impairment. And believe me few things are harder than when you MUST begin to legally define someone’s competency. Since my earliest age I was raised that ours is a nation of individual liberties and freedom. The morality and responsibility of competency gnaws at your soul.
Yet on the other hand financial exploitation of the cognitively impaired IS real. QVC is not alone among the predators.
A financial competency test could be so beneficial to families. An early warning is much safer for all than an expensive wake up call.
Monday, August 21, 2006
Caregiving: throwing stones
Patti’s symptoms of Dysphagia can confuse all swallowing related functions as Myelin deterioration short circuits communication between brain and appropriate muscles. Patti can really choke if not monitored and assisted with eating, but also her brain can go into ‘choking mode’ without any actual threat to her safety.
Sadly this malfunction seems to be increasingly impairing one of her favorite outings, movies. Concessions have nothing to do with these episodes. Rather they seem to be triggered if a scene is too startling, or too funny, or too thrilling. What begins as a cough or a clearing of the throat accelerates to choking.
The first rule of first aid for choking is “If the victim can speak, cough, or breathe, DO NOT INTERFERE.” Accompanied by bursts of cursing <grin>, flailing about of arms, and “pauses” so she can catch her breath before continuing, these episodes are not “at risk”.
Regrettably if not interrupted they can trigger the involuntary muscle responses involved in gagging and vomiting.
Usually I try to distract her and simply tell her she is not choking, just breathe normally. Sometimes her brain listens and sometimes it does not.
After an attempt or two, well intended fellow movie patrons often begin to offer suggestions. “Shouldn’t you hit her on the back?” “Do you want me to go get help?” or less well intended have begun to complain … “Hey! We’re trying to watch a movie!”
Once out of the theatre and in the hall her bout of choking ends. My theory is that the sudden change in environmental stimuli with bright lights, NO movie screen, etc ‘restarts’ her brain much like rebooting your computer when it locks up.
Such episodes were once rare but now probably affect 1 out of 3 movies anymore.
I’ve never found any formulas for success to insure Patti’s involvement in family type activities. Progression of MS symptoms can be as formidable as Goliath. As a caregiver you just have to keep throwing stones.Sunday, August 20, 2006
Caregiving: ... family first
Another common bond most share is that a catastrophic medical condition ends in death.
“Living” with a chronic illness is an entirely different universe. There is NO Hallmark “Get Well Soon” phase and there is no end in sight. Yet as long as there is life there is hope and you learn to “live”!
I never gave all this much public thought in the beginning. Then this journal soon began to take on a life of its own. Within a year it was highlighted in Australian carer publications, Eldercare.com, and even Forbes.com referenced it in an article on Medicaid planning. Questions in emails began to light up my mail box from readers of those articles.
I share OUR story, which is all I really can share. I also share our lives because families facing the challenge of one member living with a chronic illness or disability are still families first.
Children are raised, bills are paid, groceries bought, meals cooked and lawns are mowed. People still worry, laugh and cry. It isn’t that we do less; probably we do more than able bodied families because we have to.
Family activities are as much a part of caring as the nuts and bolts of a wheelchair. You MUST create the time and the means for them.
Wednesday, August 16, 2006
Parenting: Part 1 - mustangs & shooting stars
Driving is more fun and easier with two drivers. And it is kind of ‘parenting’ to ride shotgun while your daughter explores speed and the open highway in an ultimate American muscle car. <grin>
The Mustang became a perfect vehicle for an unexpected treat. Walking around outside after dinner Megan spotted a shooting star. I suddenly remembered from reading another journal that we were perfectly situated on top of a mountain to view the Perseid meteor shower. We hoped in the Mustang, lowered the top, drove away from the safety lights of the lodge, parked in the primal darkness and watched the night sky overhead with all the total creature comforts of a heater blowing warm air, leather seats and surround sound CD player. Nature is great, but it can be enhanced. <grin>
The meteor shower reminded me of space bugs hitting the Earth’s bug zapper, as so many just seemed to dart here and there before suddenly disappearing. Though there were enough of the classic shooting star types to keep it real.
Parenting: Part 2 - hiking, falcons & deer
We just carved out (as we try each summer) a couple days for hiking in the Shenandoah National Park. This pictured gnarly tree stands in front of the lodge at Big Meadows which has always been our home base. There are pictures when Megan is so young she can barely touch the branch with her arm extended up. <grin> In fact there is old 8mm footage of me barely tall enough to touch the branch, as my parents always came her for family hiking.
Hiking to the top of Stoney Man Mountain has always been a key tradition. In the mid 90’s Megan and I reached the summit to witness the first successful fledging of peregrine falcons from a nest in the Shenandoah since they had been wiped out due to DDT over 30 years earlier. It was the most beautiful and savage display of raptor artistry you could imagine.
(Whether in a Pokemon t-shirt or a rock band hat, your child’s smile through the years can dwarf the natural majesty of a summit.)
A piece of me has always held that day of the falcons as an omen on the need for parenting to find a way regardless of the obstacles. Our visits are also timed with the peak season when fawns begin to step out into the world around them, again more of the timeless passage of experience through interaction.
The National Park Service deserves repeated applause for their accessibility efforts. Not far from Big Meadows Lodge is the Limberlost Trail, a beautiful and completely accessible hiking/rolling trail. Their tireless efforts enabled us to extend Patti’s involvement, in past years, far longer than we could have hoped and enable so many people and families to enjoy our American treasures.
Megan was in charge of deer photography and with a soon to be college student’s sense of art, we leave you with this charming invasion of deer privacy.
Parenting: Part 3 - dinosaurs & detours
(Use the 'slideshow' option after clicking "view larger" for best picture viewing.)
Long before Jurassic Park brought dinosaurs to life, "Dinosaurland" opened in 1966 near Winchester, VA. At $5 admission I found it a steal, and the block long gift shop was to die for. Relics of Americana (and the Confederacy) share the shelves with dinosaurs, aisles of colored glass, and even “still” supplies for home brewing. <grin> I believe the only thing I could not find was a plastic dashboard Jesus.
Anyone remember the horror film the “Blair Witch Project”, with the spooky ads “that three student filmmakers disappeared in the woods near Burkittsville, Maryland while shooting a documentary. … A year later their footage was found.”
Well, while driving we were surprised to find ourselves approaching an exit for Burkittsville, MD! We made the 4 mile detour to the town and the nearby park woods where the terrifying events occurred. We even checked out the town cemetery to see if an abnormal amount of graves were for children.
Of course, it was only a movie but you notice we didn’t take any pictures. Why take chances? <grin> After all you wouldn’t want to wait a year for this journal entry to be discovered. <grin>
Saturday, August 12, 2006
Caregiving: ... makes you wonder?
With temps plunging last night, it makes you wonder about the magic of childhood. <grin>
(Picture borrowed without permission from the artistry of Carol Heyer)