two amazing people

"Angels are among us....Today I went to fill a prescription for my son, a daily use asthma controller …

At the pharmacy, there was some sort of problem with his Medicaid not going through to cover the cost of the inhaler. When the pharmacist said "you can bill it to your credit or debit card", I laughed and reminded her that I am out of work and have very little money.

I asked how much it cost ($132) and said I would try to borrow the money from a relative and return before they closed, that I couldn’t afford to wait till tomorrow to resolve the issue because my son is currently fighting a bad chest cold and in desperate need of his medicine.

I left the store and began to scramble to find a way to borrow the needed money. Within 5 minutes, my wife called me to say that the pharmacy called and the medicine was paid for and could be picked up.

The pharmacist told me that an anonymous person had covered the cost of the inhaler after overhearing my plight. That's right; a complete stranger paid $132 for my son's inhaler. The pharmacist pointed to a couple walking out of the store and said that the couple heard my conversation and wanted to help, and also to remain anonymous. I left the store heading home with my son's medicine, and with tears in my eyes and hope in my heart.

I cannot begin to explain how grateful I am to that couple for their generosity and kind heart. … I wish I could tell the world of these two amazing people. I know that I am forever in their debt and will, in every way that I possibly can, pay forward what they have done for my family, for my child.

telling this story is the first act of repayment..."

Dear ‘strangers’: Born prematurely and with congenital myotonic muscular dystrophy my little cousin in this story also endured chemotherapy and surgery to defeat liver cancer while still only an infant. Bless you for your kindness to this now child of courage and his caregiver parents.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com
videos: www.youtube.com/daddyleer 

wheelchair smoker’s apron

Multiple Sclerosis is a thief. Stealing abilities crushes choices. Whether good, bad, or indifferent – choices are part of quality of life.

I am not a big fan of jackbooted caregiving so I try to find safe paths even when a choice may not be the best.

Smoking is just such a potentially hazardous choice. Beyond the health risks of smoking, there is the clear and present danger from progression of Multiple Sclerosis physical and cognitive symptoms that Patti may drop a lit cigarette or hot ash on herself.

Enter discovery of the smoker’s apron, constructed of flame retardant fabric much like fibers used in fire fighter’s suits. 

While certainly not a substitute for supervision it does improve safety and I do not have to actually sit there and stare at her while she smokes. Win-win scenarios no matter how small or strange are rare in caregiving.

Speaking of thieves, MS is not the only thief out there. Some medical equipment and homecare supply companies sell the identical product, brand, and model for as much as 3X what you can purchase it for through on-line retailers such as amazon.com

When MS has stolen so much from Patti, if she wants a ‘ciggie’ now and then so be it; if having a ‘ciggie’ can be made safer then even better.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com
videos: www.youtube.com/daddyleer 

If wishes are challenges ...

If wishes are challenges … then this must be Christmas

Our wheelchair van failed us on Christmas Eve. So it was back to the old days and old ways of transferring to and from wheelchair to vehicle, except progression of Multiple Sclerosis symptoms had erased Patti’s old days abilities to assist in transferring.

Vehicle transfers unlike a pivot transfer (one-person transfer technique, the hug) from wheelchair to bed necessitate a contortionist extension of a caregiver’s / carer’s back into the vehicle.

Toss on top of holiday amplified Multiple Sclerosis symptoms the stress and confusion of being twisted, pushed, and pulled in and out of a vehicle unlike Patti has experienced in years and the best present of all was that our journey into Christmas past ended without a fall through a total of eleven transfers.

Today Patti’s needs of daily living are supported by fresh shifts of staff and lifts while I try to stretch myself back into something resembling an erect standing person and our wheelchair van waits in a repair shop lot. Should a Christmas entry feel like a battle casualty report?

For most Christmas is and should be about enjoying dreams of dancing sugar plums followed by a frenzy of tearing open presents. … For others well it can be somewhat different.

- A layoff, an illness or a death in the family can change everything. People spending Christmas at this emergency shelter never imagined this would be their Christmas. Strangers band together to celebrate the holidays

- When surgery prevented a caregiver parent from carrying their 75 lb child with cerebral palsy up 14 stairs to his bedroom, a high school student athlete volunteered his time, arms, back and heart. A simple act elevates all 

Like reading tea leaves, may we all see hope in the litter of Christmas wrappings.

… And so this is Christmas

For weak and for strong

For rich and the poor ones

The road is so long

A very merry Christmas

And a happy New Year

Let's hope it's a good one

Without any fear …

John Lennon and Yoko Ono, 1971    

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com
videos: www.youtube.com/daddyleer 

buggy bag wheelchair lap blanket

It all started with a blog entry - winter caregiving tips: wheelchair outings, then a comment:

This has been an issue that I have been working towards helping with for the past 3 years. My newest product, I think, and many agree, fits this bill.

I want Patti to have one. I'll email you right now.

Leslie

A present arrived yesterday and well take 90 seconds and stop in and visit …

Photographed outside moments later the reflective strip steals the show.

This buggy bag® wheelchair lap blanket revolutionizes enjoying winter.

As a caregiver / carer, putting on and taking off winter outerwear for a person in a wheelchair is time consuming and never really weather proof from all cold wet precipitation.  

The buggy bag wheelchair lap blanket takes about a minute and a half to put on and half of that to unzip and be out of.

With a water-proof and wind-proof outside and microfleece lining Patti is warm and cozy and while all bundled up the buggy bag is in no way binding.

You just gotta love people like Leslie Cairns who dream of making a ‘season of the year’ accessible and enjoyable for everyone.

BUGGY BAG® MOBILITY PRODUCTS

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com
videos: www.youtube.com/daddyleer 

167 year old humbug

Happy Birthday to “A Christmas Carol” by Charles Dickens, published on December 19, 1843. 

A ‘ghosty tale’ from another time and place. - Christmas fiction or is it? 

`At this festive season of the year, … Many thousands are in want of common necessaries; hundreds of thousands are in want of common comforts, sir.'

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com
videos: www.youtube.com/daddyleer 

snow falling and a bag of candy

Swirling light snow made the drive feel like riding through a snow globe. Ending up at a candy shop, well can it get much better than that?

More than a candy shop, think ‘blast from the past’. Georgie Lou's Retro Candy and Gifts, Carlisle, PA. 

Even though I could not talk Patti into bicycle streamers or a bicycle horn for her wheelchair, we laughed and laughed our way through aisles that may as well have been memory lanes of candy, metal lunchboxes and pop culture before it was ever pop culture, just something called childhood.

Building access was totally wheelchair accessible as was 99% of the store. The end of one aisle was too tight for Patti’s chair.

Afterwards riding in our wheelchair accessible van less than a mile away I asked Patti if she remembered where we just were. “I can’t remember, Lowe’s I think” she answered. (Lowe’s is a city-block sized home improvement and appliance store.) J

When cognitive and memory challenges become part of life you loose the ‘bounce’ you would traditionally get from doing something together. As a carer / caregiver you learn to live in the now.

When it comes to good times, well you are kind of left holding the memory bag for both of you. Sometimes it’s like a bag of candy, what Multiple Sclerosis may prevent you both remembering, you can always still enjoy sharing.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com
videos: www.youtube.com/daddyleer 

holiday caregiving: visiting long term care

Holidays are practically synonymous with visiting family and friends. When visiting a care facility or nursing home, physical and or cognitive challenges are part of a visit; hey it’s OK to be unfamiliar. Not everyone is a caregiver /carer.  

Bearing gifts can provide both a comfort level for the giver and anything from fun to pampering for the receiver. Just remember care facilities are not private homes so if you are not familiar with their protocols call ahead and ask.

If I were to open a gift shop for visiting … “care facility gift shop suggestions”. 

Don’t get too focused on gifts having to be objects. The best gift of all is time.

Bringing a couple cups of real hot chocolate with 'the works' could rival Santa coming down the chimney.

If there are dietary concerns, most coffee shops offer a range of sugar-free, dairy-free, etc options to go. Depending on abilities, you may need to transfer to a sippy cup but still you’ve done good!

Bring something to facilitate interaction, for example pictures, holiday cards, or a game. Props can only help when memory loss or cognitive impairment might challenge conversation alone.

Family pets always get left out of holiday activities; if you own a sociable pet bring them along. Call first, but most facilities welcome pet visitors. Don’t be offended if your pet gets more attention than you.

An outing could be a treasured gift. Towns small and large are decorated for the holidays; many communities have drive through illuminated displays. If you are unfamiliar with transferring someone to a passenger vehicle, just ask. Facilities are glad to help you if you can be patient. … or you can always splurge and rent a wheelchair van or hire an accessible taxi for a couple hours.

From the comedy of George Burns and Gracie Allen … Gracie comes home from the hospital after visiting a sick friend.

(George) 'Where did you get the flowers?'

(Gracie) 'I went to visit Mable.'

(George) 'Yeah, so?'

(Gracie) 'WELL, you told me to take her flowers!' 

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com
videos: www.youtube.com/daddyleer 

holiday caregiving tips: the abilene paradox

While trying to enjoy the holidays as a caregiver / carer, or with a chronic illness / disability do you ever find yourself boxed into a position that no one really wants simply because no one wants to speak up?

Believe it or not there is a name for this, the Abilene Paradox.

Long, long ago before Multiple Sclerosis, even before we were a couple Patti invited me as her date to an award dinner for the paper company she worked for (and yes decades before “The Office” made paper companies fashionable J).

The keynote speaker shared the Abilene Paradox which obviously so impressed me it has stuck to this day. Told as an anecdotal concept of unsatisfactory group decision-making, it was a story of one family’s decision to take a trip to Abilene that no one individual member actually wanted to take but no one wanted to “rock the boat”.

Years ago sitting at home with our infant daughter and Patti listening to holiday music following Patti’s first major MS exacerbation and hospitalization, the absence of outdoor holiday lights came up. I had always gone overboard illuminating basically anything on our property even making it to the top 10 list of holiday displays in our county paper. Obviously life had changed with MS now in ‘our family’ and I claimed this was cool with me. The next day I came home from work and found a single strand of lights on an indoor plant and boxes of my outdoor lights lined up by the door. I could only smile - this family was never headed to Abilene.

Holidays bring together a lot of people many with no frame of reference for daily life with caregiving, illness, or disability. Resist the urge to all rush to agree on something. Speak up! Communicate preferences and needs!

Enduring vs enjoying holiday time together is a choice. 

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com
videos: www.youtube.com/daddyleer 

winter caregiving tips: wheelchair outings

While winter embraces all, it does demand caregiver / carer respect. Our story is about Multiple Sclerosis however winter weather does not discriminate over diagnosis.

In a wheelchair Patti does not generate the same body heat as a walking person. Cognitive impairment only adds to risk when outdoors in any weather.

Speculating on how fast it takes for hypothermia to set in is a fools’ question. … Prepare!

It’s easy to say “wear several layers of loose-fitting clothing”. However when someone is unable to dress themselves this can get beyond interesting. I find a sense of humor most helpful.  

While a hat and scarf are often recommended I have concerns about mixing scarves and wheelchcairs, seems an accident waiting to happen. Hats work OK but are easily misplaced and can create some serious electric hair styles.

For outerwear we usually rely upon a hooded wool zippered cape. Capes are easier for getting on and off when assisting someone in a wheelchair and a zippered cape simply increases options. Hoods are easy to flip up or down, cover everything except the face and are always attached. While wool is ‘old school’ it still has the unique ability to provide warmth even when it is wet.

Mittens ‘rock’! Rather than struggle to fit her fingers into gloves Patti just slides her hands into warmth.

Do not forget lower body. Wrapping a blanket around gives that stadium seating look. However sliding leg warmers over pants legs are just as easy and makes a fashion statement. Both help maintain body heat and reduce any wind chill.

Thick socks with oversized shoes or boots make assisting with dressing infinitely easier. Patti’s not going to be walking. Proper shoe size is not as important as warm feet!

Remember your carer / caregiver self especially your footing on snow or ice-covered sidewalks, steps, driveways, etc. Falling is unacceptable.

Most winter outings will never need all of the above. Being prepared separates hiding out or enjoying winter to its fullest! 

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com
videos: www.youtube.com/daddyleer 

repairing Multiple Sclerosis damage

'Twas the night before Christmas, when all through the house

Not a creature was stirring, not even a mouse”

Fortunately, that is not true of some rodents at Cambridge and Edinburgh Universities, where researchers identified how to help stem cells in the brain regenerate myelin sheath. Multiple Sclerosis could be reversed by activating stem cells in brain …

From MS Society UK:

Myelin repair a reality, says MS Society research

from BBC:

Study offers hope of 'repairing' MS damage

True this is still in the ‘rodents and research’ stage but hope for the holidays is always welcome!

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer 
musings: patrick ponders

caregiver or carer

Alas! the barrier of a common language. In North America, we are “caregivers”, everywhere else in the English speaking world we are “carers”.

Communicating between or with similar caregivers / carers should be helpful. Yet, secondary labels such as family, spousal, sandwich, elder, parent, child, and informal often confound rather than clarify.

Giving care is dynamic and often unique in needs. We become defined by our circumstances.

‘Juggling’ is the only phrase I have ever found to describe balancing caregiving for my wife with progressive Multiple Sclerosis while basically single parenting and raising our daughter – which has occupied 21 years of my life.

In the beginning a person struggling for independence following a life altering diagnosis or disability may bristle at unsolicited though well intended offers or labels of a family member or friend as their carer / caregiver.

On the other end of the spectrum, when progression evolves to the care facility era are you still a caregiver / carer?

When some of us become legally empowered to make decisions for another, it’s odd that neither the word guardian nor advocate involves the root word ‘care’.

Regardless of labels or situation I believe we share some common denominators.

The carer / caregiver chooses to step forward as sentinel. There is no lengthy deliberation over how to care, how to spend money on care, and the future of care.

I believe we can all agree that we are the ‘hands on’ family or friends of an individual who needs help with his or her activities of daily living.

I believe most of us feel we are alone.

We have no secret handshake. There will be no gold watch, no retirement plan. We cannot even agree on what we are called.

Most important, we’ve chosen to turn from ordinary people to something different.

Tonight, Patti and I sat sipping hot chocolate while snow flurries danced around us. While Patti’s memory of the moment melted with the snow, I couldn’t help but reflect perhaps we caregivers / carers are like snowflakes and no two are the same.

                                                          

Special thanks to Elder Depot Caregiver's Corner for

Great Big List of Caregiver Blogs

by Patrick Leer

BLOGS:

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

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