As for me, I’ll just have to share these pictures in an attempt to capture …
Caregiving also needs time to be alone, to think, to refocus, to remember how to dream.
Caring as it evolves into caregiving necessitates that you learn some skills. ORGANIZATION probably is the number 1 category.
As a 'guy' this became a practical problem because there are limits to what pockets can hold. Yes! The need for a MAN PURSE began.
Patti quickly went to a wheelchair, and before that she simply chose to struggle clutching to whatever was convenient. In other words she could not hold a purse. Was it appropriate for me to carry a woman’s purse? (Yes for a few moments but only for a brief few moments. – In excess was bordering on cross dressing.) Plus I found myself needing to put caregiving stuff in her purse. While that kind of made it unisex – it still looked like a woman’s purse.
Accepting my role as caregiver may have been an easier emotional adjustment than realizing I had to start carrying a purse from a guy's perspective.
I bought my first MAN PURSE almost 15 years ago before the phrase was even main stream pop culture. Eagle Creek made something that resembled a camping briefcase. Most importantly it was MANLY in appearance and functional.
Caregiving certainly challenged the Eagle Creek “guarantee for life” as Patti somehow managed to roll over and kill it twice with her scooter. Patti during her scooter era was the reincarnation of a tank commander. Yet, how could Eagle Creek refuse an accident involving a disabled American? Though I thought they were a bit testy the second time.
Alas! One of our cats chose to take revenge on the MAN PURSE and it lies now in a land fill. Following a short vacation, during which the cats had been at the kennel and the MAN PURSE had been with us, obviously words must have been exchanged and the cat became upset. The MAN PURSE suffered through its last weekend in our home as a litter box.
Regrettably Eagle Creek just would not consider this one covered under the “guarantee for life”. Even though I argued it could have been a Bob Cat or a Cougar while I was camping, apparently felines urinating into 15 yr old Eagle Creek MAN PURSE is not covered. … Caveat Emptor!
Sigh … after 15 years I had to shop for a new MAN PURSE. This time the problem was TOO MANY choices. The world had changed.
What makes a MAN PURSE different than a PURSE, you ask? Nothing - not anymore. Marketing of ‘Messenger Bags’ has created a unisex functional class of carry all bags designed to be carried across the body, hands free vs a shoulder bag. Of course, there are still fashion type accessory bags for women (and now also for men).
I chose this particular model by Timbuk2 because its vertical configuration was unique yet still enables me to carry any folder or file for Patti’s appointments. Expandable it can carry multiple files or a three ring binder of records or a book for reading while I’m waiting, plus regular spare Depends, and package of wipes. – Or simply dump all that out and collapse it down to personal necessities. The personal organizer compartment holds pens, pencils, notebooks, address book, calendar, Cluster Headache meds, Swiss Army knife; The cell phone holster is attached to the strap for easy access. Best of all, the exterior pocket allows me to instantly grab those reading glasses without having to open my MAN PURSE to look at price tags, menus, etc and further delay the bifocal era. (True - vanity is not a necessity. <grin>)
While I had preferred some different color configurations my daughter vetoed them as I am too old and not that cool. <grin>
Women as caregivers do not have to work through this gender issue. Many guys cheat for years, handing increasing stuff to their wives, dates, and female companions to hold in their purses. Cell phones, digital cameras, glasses, MP3 players, etc our world increasingly gains STUFF. Caregiving throws that equation off balance.
Once caregiving progresses to the ‘hands free’ level an organizational bag is mandatory. A MAN PURSE could be in the future of more men than realize.
To me part of TO CARE is that you MUST carve out time for both of you. (This seems to tie into the 'new theme' of exploring T S Eliot's "Teach us to care and not to care.")
Convenience and spontaneity are functions more suited to the able bodied world. You just have to block out time, prepare and adapt.
It will NEVER be easy and most likely challenging in spite of your best plans. The world is not really accessible but then again it is not exactly inaccessible either.
Since transition to a care facility I worry that Patti would feel the absence of family all the more on Sunday with a building full of visitors because most residents only get visits once a week. Patti on the other hand has visitors, outings, and visits home throughout the week however her MS related memory problems impair that recall.
Yesterday, Sunday, Patti and I took a leisurely roll through the park to the movies to watch Steven Spielberg’s “War Of The World’s” (with buttered popcorn, Twizzlers, and soda, of course), desert at Dairy Queen, and a bit of a Blue Grass music concert in the park on the roll back.
I’ve always enjoyed the original book by H G Wells (and all the many adaptations) – what an ‘off the wall’ message that our germs and diseases are our best defense against the evil aliens. …. please make sure to go outside and cough before you go to bed so we all can sleep safer. <GRIN>
Anniversaries mark time. Yesterday, Wednesday was plentiful.
36 years ago, on July 20th, 1969, I sat mesmerized in front of a TV with my parents and remember vividly the words crackling through space in the late afternoon, "The Eagle Has Landed!"
Through our own yells we could hear cheers from neighbors. People erupted outside to be together in pride and just talk. Darkness could not come soon enough. People wanted to SEE the moon with their eyes. It was summer in Maryland it would be hours till sunset and the WALK! … (In retrospect, how convenient of NASA to wait until the moon was out! <grin> Of course that was a fluke of our specific geography.)
20 years ago, on July 20th, 1985, Patti and I were married. (Which also means I had to update “about me” in this journal <grin>) Patti’s “probable MS” diagnosis preceded marriage by a year. Until I checked the date on license I didn’t realize the benchmark. MS and living with MS has a way of dominating everything.
It was an eclectic outdoor ceremony and reception. More picnic than formal, it was fun. “Probable MS” symptoms had disappeared and we were young and immortal. Patti had defeated the disease, we were sure. Life was going to be magnificent!
Patti had curiously insisted on modifying wedding vows to specifically leave out “to have and to hold, in sickness and in health, until death do us part”. I felt the 'probable MS' thing had just caused her to think too much about the dark side. … 20 years later you can see how much I pay attention.
1 year ago, Patti’s Long Term Disability medical insurance policy was “interrupted” as her former employer was centralizing all LTD policies into one national office. This day of infamy began a snowball of medical insurance and medical billing debacles that currently fill three 3” binders (yes, 9” of processed paperwork) and I am looking at 4” of folders still active. Patti’s MS symptoms prevent her from participating at all in this mess. I long ago gave up calculating how many hours I have spent. It remains close to a second full time job a week.
If I did not stay with them step by step and appeal everything in writing within the brief windows of time allowed then tens and tens of thousands of dollars possibly even hundreds of thousands of dollars could go into collection. When in reality Patti owes nothing.
Either they are collectively insane or there is a collective malevolence. It is no surprise to me that the majority of bankruptcies filed in the US claiming medical bills are from people who “have” or “had” medical insurance. <grin>
YESTERDAY – So what did we do to celebrate?
Megan and I picked Patti up for an afternoon matinee of “Charlie and the Chocolate Factory”. Movies remain one of Patti’s favorite activities as she can SEE 30 foot images. She totally enjoyed the film.
Afterwards we came home for Applebee’s carryout and some simple quiet time enjoying a summer evening on the patio chatting and reminiscing about so many other July 20th summer evenings!
No problems, no hassles – it doesn’t get better than that.
Patti couldn’t stay awake long enough for the moon to come out before she wanted to go to bed.
Glancing up at the bright summer moon later in the night my mind raced through the 36 years since I heard "That's one small step for a man, one giant leap for mankind."
“Teach us to care and not to care…” T. S. Eliot
I would never presume to teach. However, with nearly two decades as a spouse caregiver hopefully I can squeak by with ‘share’.
Taking a detour from this journal’s original focus, I will try for awhile to share my philosophy or at least ‘thoughts in general’ about caregiving.
The T-Ball story posted previously has motivated me.. I’m 54; the coach is half my age at 27 the kids influenced are 8 yrs old. … I believe, in general, the essence to care is fading. Or maybe the environment to CARE is out of whack. Certainly something is broken.
I coached a season of T-Ball. It was more than memorable, it was magical. Kids just learning the game bring to baseball the element of genuine unpredictable fun.
Believe it or not, I never coached another season. While the "Pink Panthers" were a blast, the parents were another story. It took too much restraint during games to avoid taking a bat and bludgeoning half of them. I suspected this might traumatize their children. It was definitely affecting my ability to CARE.
We cannot legislate nor enforce CARE. You cannot beat your chest and exclaim “I care the most!” CARE has to cease to be a just a song lyric, or exploited during a political campaign, or only a topic for a Sunday sermon. It isn’t always about the “homeless” or “needy”. If a minivan cuts you off in traffic on a bad day and your car was equipped with heat seeking missiles you know you would send one up their tailpipe and vaporize that van with no thought about passengers. CARE is fading.
The way a child is taught to CARE, or more importantly sees how others CARE, becomes the foundation for future caregiving and so much more. People, families, neighborhoods and groups have to begin to do a better job of learning and teaching to care and not to care. Caregiving is however what this journal is about so I will try to avoid digressing. Now back to the specific extension of CARE that becomes caregiving.
Of course, it is all so easy to talk about versus the actual doing. Each caregiving situation is frustratingly personal. Each ‘person in need’ has unique levels of disability and symptoms and a course of progression then you have to consider each caregivers individual resources from physical health and strength to economics and home environment.
Random variables like these could drive a mathematician bonkers looking for a formula. It’s overwhelming, it’s only logical to “run for the hills.” You cannot commence with your logical mind.
Call it the heart or the soul or whatever. Caregiving is a path chosen and a journey that unfolds …
... stopping by to pick Patti up for an evening at home Tuesday afternoon I found her in bed.
She claimed she didn’t want to go anywhere she just wanted to nap, she felt like crap. So I decided to just visit a bit and sit while she slept. We chatted a bit before she dozed off.
A couple minutes later she pops up like Linda Blair in the Exorcist and projectile vomits in an excellent 4 ft spray pattern. Best of all somehow missing me! <grin> Impressive!
Since Patti had fallen recently trying to get out of bed she was hooked up to a bed alarm that goes off if she makes a sudden movement with a high decidable whooping alarm. I was unfamiliar with it and could not turn the damn thing off. So I do a typical manly man thing and rip the alarm off the bed. It still won’t go off! Noticing it is also attached to her shirt I try to disconnect it there. I’m equally unsuccessful with the latch so I again do the male thing and rip. With a tear it comes off along with a piece of her shirt. But the damn alarm is still going off!!!!
Now I am holding an extremely annoying alarm and a chain with a chunk of Patti’s shirt hanging from it.
Patti is sitting up in a bed, along with wall, and floor sprayed in vomit. She looks at me and exclaims, “You ripped my shirt!”
With vomit everywhere and the alarm from hell wailing in my hands, Patti's remark struck us both so funny we both just started laughing and laughing and couldn't stop.
Finally, two staff members come rushing in panting to respond to the alarm. They look at us like we have lost our minds.
CARE was certainly tested as it was also dinner time at her facility and needless to say all the staff was busy taking residents to the dinning rooms or working in the assisted dining room. Either Patti could lie there for a bit till someone got a chance or you can guess who got to roll up his sleeves and refresh his home caregiving skills. <grin>
Tucked away in the AOL Sports section I found this story:
Man Accused of Having Boy Hurt So He Wouldn't Have to Play Him
PITTSBURGH (July 16) - A T-ball coach allegedly paid one of his players $25 to hurt an 8-year-old mentally disabled teammate so he wouldn't have to put the boy in the game, police said Friday….
(click on blue hyperlink headline for full story)