Caregivingly Yours, MS Spouse Caregiver

Tags: caregiving, Multiple Sclerosis, Christmas lawn displays

Sunday, December 02, 2007

Caregiving: THE SEESAW parenting and caregiving

Does time spent together count as a gift? Certainly the retail industry would scream blasphemyyyy with all the gusto of Howard Dean.

Caregiving and living with Multiple Sclerosis as a family was and is a seesaw in our story between caregiving and parenting.

Until our daughter, Megan, turned 16 we had never spent any kind of vacation that was not controlled by MS. Exacerbations or flare-ups aborted planned trip after trip in the 11th hour before departure. If we managed to get under way the same pitfalls shortened or modified those trips. Bladder and bowel accidents were beyond disruptive. Victories did happen, here and there, and they were treasured.

Attempts at time together while family or friends acting as Patti’s caregiver had some success but were haunted by injuries to those caring for Patti, or to Patti herself. Caregiving became increasingly physical and 24/7 demanding.

The advent of the care facility era was the first time that Megan and I could genuinely do something together and know that Patti was safe. That year Megan turned 16.

Yes, I felt a need to catch up. … The following video ‘remembers’ one side of that seesaw year between the dawn of the care facility era and the phoenix dawn of father and daughter.

16th Birthday Road Trip (3 minutes)

A year later the care facility era continued to enable us to take spontaneous day trips to see, touch, and feel opportunity and dreams.

"The Gates" of Central Park (1 minute)

Like any seesaw, balancing caregiving and parenting can sometimes leave you crashing down on your butt when the other person slips off. <grin> Yet, to stop trying is not an option.

Caregivingly Yours, Patrick Leer

Tags: caregiving, Multiple Sclerosis, parenting, 16th birthday, Megan Leer, The Gates, Queen, WWRY, Las Vegas, Integratron, Lake Havasu, 29 Palms, Los Angeles, San Diego,Tijuana, Stone Harbor, NYC

Saturday, December 01, 2007

National Family Caregiver Month "tools of the trade" - shower

Last but not least of the ‘tools of the trade’ of home caregiving is the shower. Not only am I trying to squeeze this in during the waning hours of National Family Caregiver Month but the shower can be the most dangerous of places in the home for both the able and disabled.

Not being Kennedy’s we have never been able to afford the more incredible shower chairs that are out there on the market. At Patti’s care facility they have such state of the art stuff that a home caregiver can just stand and dream like a kid in a candy shop.

Additionally Patti has never been able to use transfer type seats that some people can use between a wheelchair and a tub. She is unable to move sideways.

Believe it or not the safest and most effective (and certainly most affordable) for Patti has been a plastic patio chair. Of course here again it takes muscle to transfer her from wheelchair to lawn chair and back again, but fortunately and God willing I can still do it.

A reader forwarded along a suggestion the SHOWERBUDDY. I personally have no experience with it but it sure seems to cover all the bases and is quite similar to the high tech machines available to Patti at her care facility.

I did have to smile at the picture of the “first ‘showerbuddy’” especially compared to Patti’s current shower chair pictured in our accessible shower. Didn’t someone once claim that necessity is the mother of invention.

Caregivingly Yours, Patrick Leer

Tags: caregiving, shower chair, ShowerBuddy, National Family Caregivers Month, care facility

Friday, November 30, 2007

National Family Caregivers Month "tools of the trade" - Rascal Scooter

For 15 years, give or take some months, Patti’s Rascal Scooter has not only been the pride of the ‘caregiver tools of the trade’ but Patti’s independence and freedom in a dependent world.

In the early years it empowered her, as she traveled miles to shops and stores or just for a ride. Now days her Multiple Sclerosis progression necessitates assistance transferring from wheelchair to scooter and help in driving. Yet on wide enough paths with few pedestrian targets around her, Patti can still open it up and “feel” the freedom of movement.

Rascal Scooter

With our first light snowfall last week, it was easy to “remember” …

I suspect many brands have entered the market in the last 15 years but I know for a fact that this Rascal Scooter is a trooper.

Caregivingly Yours, Patrick Leer

Tags: Rascal Scooter, scooter, caregiving, National Family Caregivers Month, Multiple Sclerosis

Tuesday, November 20, 2007

Thanksgiving morning 2007 = 18th year of caregiving

Most nights it is long hall.

160 steps, give or take a few, from the door of Patti’s room at her care facility to the after hours exit door. Sometimes I count the steps to try and quiet the noise in my head.

On average I take Patti out and/or bring her home for the evening 4.5 nights a week.

Making sure her sleep machine is on, mist both her and bed linens with lavender scented Sleep Well aromatherapy spray, spray her wheelchair seat and padding with Febreeze, and write on the oversized wall calendar whatever today’s outing or visit was. Tucking her in, I try to leave her laughing or smiling about something before turning out the lights and closing the door.

… and starting down the long hall.

Behind every door I pass is someone once independent and now dependent. Reflecting on quality of life can quickly become a caregiver’s rip tide.

Focus on caring … (the voice in my head says) remember to laugh. … Monday night Patti locked me out of the van while I stopped for gas. Patti is perpetually fidgeting with everything and anything and managed to activate the door locks, while the keys were in the ignition so she could listen to the radio. Between her mental confusion, frustration, and my freezing (I had hopped out of a warm heated van in only a shirt), I am sure we were entertaining yelling through a car window as I repeatedly tried to explain to her how to unlock the automatic door locks and Patti rather colorfully offered her feelings about the predicament. <grin>

Make time to play … continuing to convert old video camcorder tapes to DVD we have been able to watch reruns of our life. Years ago because Multiple Sclerosis kept Patti excluded from so many activities we videotaped as much as possible so we could share ‘our’ play with Patti.

Thanksgiving morning will begin the 18th year of caregiving … plus 160 steps give or take a few .. and, of course, countless puddles.

Caregivingly Yours, Patrick Leer

Tags: caregiving, Multiple Sclerosis, care facility, Thanksgiving

Monday, November 19, 2007

midget albino cannibals vs pilgrims and indians

Spending Thanksgiving with the Pilgrims and Indians? Personally, I’m adventuring to Boonton, NJ, the home of “midget albino cannibals” as reported in "WEIRD NJ".

While Patti and our daughter Megan, who will be acting as primary caregiver, will be safely spending Thanksgiving with Patti’s parents and family in Pennsylvania, I will be charging off to visit relatives on my annual quixotic drive through the fabled people and places of New Jersey.

Caregivingly Yours, Patrick Leer

http://caregivinglyyours.com/

Thursday, November 15, 2007

National Family Caregivers Month "tools of the trade" - cooking

Chewing and swallowing challenges are not unique to Patti’s Multiple Sclerosis related symptoms of Dysphagia. Multitudes of diseases, disorders, and injuries can turn any meal or snack into ‘at risk’.

The caregiver has to walk the line between the quality of life in creating a family meal and protecting life by serving and monitoring a safe meal. NO easy task.

Patti’s closest brush with the fatal edges of Multiple Sclerosis involved a near fatal choking accident while visiting with her parents almost 9 years ago.

This news story by WHP TV 21 tells it best, as I wasn’t there.

Since every caregiving situation is unique I thought I would turn this entry over to recommendations from readers. (By the way I am always honored anytime a reader forwards me something to include in this journal. Thank You!)

The Dysphagia Cookbook: Great Tasting and Nutritious Recipes for People With Swallowing Difficulties by Elayne Achilles “… a specialty cookbook filled with nutritious, great-tasting recipes for those whose eating options are limited by chewing and swallowing difficulties. …”

The I-Can't-Chew Cookbook: Delicious Soft Diet Recipes for People with Chewing, Swallowing, and Dry Mouth Disorders by J. Randy Wilson "…meets a real need…excellent cookbook…the nutrition chapters are a reference work themselves…I would recommend this to those with swallowing difficulties." Multiple Sclerosis Society UK.

or …

30 Million FORGOTTEN American Diners NEED HELP From the Food Network … CaregiverHelp.org challenges the Food Network & their talented TV Chefs/Hosts … ”Please encourage these TV Chefs and their production companies to dedicate some shows and recipes for those who usually have to put up with a very mundane diet….” Jason Seidler

Caregivingly Yours, Patrick Leer

caregivinglyyours.com

Tags:caregiving, Multiple Sclerosis, MS, Dysphagia, choking, National Family Caregivers Month, WHP TV 21, Food Network

Monday, November 12, 2007

... from Iraq

On Veterans Day I received this YouTube video created by 'the guys' in my nephew's Marine platoon in Iraq. Danny is the narrator.

Caregivingly Yours, Patrick Leer

Tags: Veterans Day, Iraq, Marines

Sunday, November 11, 2007

Veterans Day 2007

Dear Veterans,

THANK YOU for caring for all of us, all of the time …

Friday afternoon I had the most extraordinary experience. Working away on the computer an IM popped up from my nephew in Iraq with the Marine Corps.

It was sooooo great to hear from Danny and talk with him (well IM with him) in real time across the world in a war zone. I believe it may have been the coolest thing I have ever done on a computer.

Veterans not only epitomize caring but they are family and have families. Veterans are everyone’s family.

Caregivingly Yours, Patrick Leer

Tags: Veterans Day

patrick leer

Veterans Day - WWII

A year ago I remembered our family’s WWII veteran history on You Tube.

I pray this generation of veterans in our family and all families return safely home.

Caregivingly Yours, Patrick Leer

Handicapped driver yield$ in ticket appeal

Tags: veterans day

Friday, November 09, 2007

Caregiving: disability parking and "parking nazis"

By Peter Gelzinis / Boston Herald / Photo by Matthew West

“… Renee explained how she’d been late for a prescribed physical therapy appointment … she forgot to pull her driver’s visor all the way down, so as to fully display her handicapped placard. …

…The Weymouth parking Nazis said “Nein” twice. “I found them to be a very snippy and arrogant bunch,” Renee said. “When I told them that my placard was in the visor, all they said was, ‘Well, you can’t expect a police officer to go looking for it.’…”

In search of some justice, if not common sense, Renee decided to take her case to court - Norfolk Superior to be precise.

“…If I wanted to go ahead and appeal my $100 parking ticket, the girl in the clerk’s office said the court would charge me $275 to file the appeal. … “And ma’am, one more thing I have to tell you,” she says to me, “even if you win, you won’t get the $275 back.”

“So, finally, I just sent the ticket in and said, ‘To hell with it, you win!’ ”

We’ve had a couple similar encounters with “parking Nazis” fortunately all of ours have ended happily though certainly time was involved in fighting the ticket.

One incident actually occurred while Patti sat in the vehicle with her wheelchair clearly in view. The disability placard was not hanging from the rear view mirror it was somehow on the dashboard. When I walked back to our vehicle, the officer even met me and strangely informed me with a grin that he “left me a $200 note” on my vehicle.

Weeks later in court the judge learning that all three citizens sitting in court that day in wheelchairs and their caregivers were there contesting tickets issued by this same officer not only voided all tickets but gave the officer a tongue lashing that had to leave marks.

It is a shame that common sense is not always associated with ‘power’.

Caregivingly Yours, Patrick Leer

http://caregivinglyyours.com/

Tags: caregiving, disability parking, Weymouth MA, Peter Gelzinis, Renee Moffatt

Wednesday, November 07, 2007

National Family Caregivers Month "tools of the trade" - wheelchair

THE WHEELCHAIR rolled into our family life like some stygian chariot. Patti’s resistance was valiant but futile against the progression of Multiple Sclerosis.

Yet over the decades THE WHEELCHAIR has grown to mean safety, mobility and empowerment. Even color reflects the changing image as Patti’s current Quickie® LXI is bright yellow.

THE WHEELCHAIR is such a part of our lives that our 19 year old daughter has never really seen her Mom as a walking person.

Even our home pivots around it. Remodeling in our previous home was endless; we finally decided to simply build our current home from scratch. Until a WHEELCHAIR is a permanent part of your family you never realize that doors come in different widths or the height of most everyday things you need to reach.

(When you’ve been in a wheelchair as long as Patti has then enjoying some mutant moments is understandable.)

For example, a couple years ago at our daughter’s high school Patti created her own roller coaster out of an accessible hallway between three levels that rivaled a hillside. It took me most of that distance to catch up with her. No question that Patti enjoyed her wild ride and especially screeching ‘walkers’ jumping out of her charge.

At home our living space is all about rolling furniture. Inspired by the use of mobile modular furniture in Frank Lloyd Wright's Pope-Leighey House, Patti’s older and spare WHEELCHAIRS are the balance of the sitting décor.

Able-bodied visitors get a sample of being in and operating a wheelchair. The dynamics of the room are determined by the occupants not the furniture. Most importantly Patti is not the exception sitting in her WHEELCHAIR.

The advent of THE WHEELCHAIR as a ‘tool of the trade’ of family caregiving was ominous, but in retrospect was a milestone of surviving and even more so … about living.

Caregivingly Yours, Patrick Leer

Tags: caregiving, caregiver, Multiple Sclerosis, MS, wheelchair, Quickie LXI, Frank Lloyd Wright, Pope-Leighey House, National Family Caregivers Month

Sunday, November 04, 2007

National Family Caregivers Month "Tools of the Trade" - van Pt 11

"Tools of the Trade" / Vehicles Pt. II

Ramp vs Lift

Lift conversion raises the vehicle roof.

Ramp conversion lowers the vehicle floor.

Your converted vehicle height can be a significant factor should you intend to keep your van in your household garage or want to be able to use parking garages. Clipping off all those overhead pipes in a parking garage is frowned upon in most municipalities. <grin>

Lift is a mini elevator.

Ramp extends outward.

Consider where you will most often be using it. A ramp requires the most adjacent free space to deploy.

Fold-out ramp vs under floor ramp

An under floor ramp extends from and retracts into the floor of the van. A fold out ramp works much like a bird’s wing unfolding outward and then folding back up into the van.

Personally I believe that appliances and machinery conspire to randomly disrupt my plans, so I prefer the fold out ramp because it is easiest to manually operate if technology chooses to behave badly.

Who, What & Why?

Will only the caregiver be operating the vehicle? Assisted driving controls represent a significant cost but they may not be needed.

Tie downs options are available ranging from manual for caregiver only to more automated for use by wheelchair occupant.

Seating configuration options can also affect conversion costs.

· Does the wheelchair need access to the front? Patti is always unclicking her seat belt. I must keep an eye on her and have her within reach.

· Will you want to have other passengers? Will they be ‘able bodied’ or could they also be in a wheelchair?

Can other people get in and out of the van? Does the ramp or lift obstruct door access unless deployed? Most new vans have two side doors but older models may only have one.

Most people will find themselves shopping for something they never imagined needing or even knew existed, a hybrid of motor vehicle and medical equipment.

Shopping for assistive technology can be overwhelming. Stay focused and enjoy, the end result is empowering for everyone.

Caregivingly Yours, Patrick Leer

Tags: National Family Caregivers Month, wheelchair van, caregiving, Multiple Sclerosis, assistive technology

National Family Caregivers Month "tools of the trade" - van Pt1

For National Family Caregivers Month I thought I would try a series of entries about ‘tools of the trade’.

Why not start with the most expensive? … an accessible vehicle. Whether new or used these vehicles will cost you the same as luxury cars like BMW or Jaguar.

Though whenever I pull up next to a BMW at a light in my Dodge Grand Caravan with IMS RampVan conversion and rev my engine in vehicular greeting, the BMW owner never seems give me that haughty, fellow luxury car owner nod of recognition. <grin>

While pricing seems profiteering to me, morality is not part of the equation in a free market. If you need something then you pay the piper.

I absolutely endorse the IMS RampVan. They are dependable work horses. Yet, that’s like endorsing nostalgia. IMS was swallowed by the Braun Corporation. You should, however, be able to find IMS RampVans in the used vehicle market.

Depending on your economic philosophy corporate acquisitions can be a plus or can be a minus for consumers.

Braun’s swallowing of IMS has not made my life easier. Repair and maintenance of my IMS RampVan conversion is more challenging with the extinction of IMS RampVan dealers and/or service facilities.

Yet I must acknowledge that when push came to shove and over $3,000 in out of pocket costs for conversion related repairs were at risk because the warranty was tied up in the ‘acquisition’ of IMS, Braun did do the ‘right thing’ and honored the IMS warranty.

Ralph Braun grew up disabled with spinal muscular atrophy. "I realized there had to be a better way for me to get around." With creativity born of necessity began the Braun Corporation.

Caregiver extraordinaire, Sue of AOL Journal “A day in my life ...” has owned two Braun Entervans over the years and swears by them.

If shopping is in your future just Google wheelchair accessible van narrowing search by your location. Enough pages of links will open to probably keep you busy shopping as long as you want.

Caregivingly Yours, Patrick Leer

Justices to Hear Case on Wages of Home Aides

Tags: caregiving, Multiple Sclerosis, wheelchair accessible van, IMS RampVan, Braun Entervan, Braun Corporation, National Family Caregivers Month, assistive technology

Friday, November 02, 2007

Caregiving: equal rights

Sometimes I believe it is helpful to look at caregiving from different perspectives.

“For 20 years, she had cared for clients in their homes, bathing them, cooking for them, helping them dress and take their medications. But now, suffering from kidney failure, she is too ill to work."

Evelyn Coke's day in Court, Supreme that is.

“Frail and sitting in a wheelchair the 73-year-old former home-care aide who regularly worked twenty-four hour days three or four times a week watched as her case, Long Island Care at Home, Ltd. v. Evelyn Coke, seeking overtime pay for in-home caretakers hired by third party companies”

Later, in a unanimous decision …

Home care workers not entitled to overtime

“The Supreme Court ruled that home care workers are not entitled to overtime pay under federal law.

...If Congress had wanted to apply the law’s wage and overtime provisions to such workers, “it easily could have done so,” the Bush administration said in papers filed in the case. “

………………………………………………………………………………

“Everyone has a stake in this issue. When workers earn less than the minimum wage, their families struggle from one crisis to the next and the resiliency of local communities suffers. When unscrupulous employers evade or violate laws, responsible employers are forced into a race to the bottom that threatens to bring down standards throughout the labor market. And when significant numbers of workers are underpaid, vital tax revenues are lost.” Annette Bernhardt, Economic Justice Project at the Brennan Center for Justice at NYU School of Law

………………………………………………………………..

Evelyn Coke is a name and a face representing the support and respite that every home caregiver and person needing care understands.

Such problems may be beyond the frame of reference or even imagination of most Americans.

What is maddening to me is that the three branches of our government play hot potato with the “equal rights” of those who “care” for a living.

Caregivingly Yours, Patrick Leer