caregiving: a comet tale

Patti remarked that she had not been to Hershey Park in a couple months. Actually it has been a couple years but with Patti’s Multiple Sclerosis memory loss and mental confusion I can never be really sure where she is time wise. From her point of view of the moment perhaps it has only been a couple months. Recall for her is not unlike stepping into a broken time machine. 

 

She talked of wanting to ride the Comet and the Wildcat. The last time Patti rode a coaster her brother was with us and the two of us struggled to get her in and out of roller coaster cars.

 

Since then her progression has only worsened and she can no longer offer any self assistance with transferring.

 

Tuesday was one of those rare 70 degree evenings in August so I decided to go for it. The Comet seemed doable as it is an old school coaster with bench seating and a grab bar vs the contoured seating of modern launch coasters.

                   

My plan quickly unraveled at the Comet. Frankly I was hoping to appeal to the eager, strong high school and college age students that usually staff the rides for assistance. However with schools back under way, seasoned citizens take over staffing. … A kind but frail senior gentleman attending the ride did offer to hold her wheelchair while I tried to transfer her. <grin>

 

Forced to invent a one person transfer from a wheelchair to a coaster bench lower than the wheelchair, I somehow got Patti into and out of the Comet car.

                  

Patti had a grand time as we made the first 80 ft drop and raced around the track at 50 mph.

 

The Comet both the ride and the thrill of transferring in and out of the car was enough for both of us and Patti happily settled for enjoying the park atmosphere, games, food, “smoking huts”, and the Dry Gulch Railroad which has a wheel chair accessible car.

                   

There are times that caregiving is more than care giving. Sometimes a caregiver may want to try to empower the improbable.

 

Caregivingly Yours, J Patrick Leer 

website: www.CaregivinglyYours.com

videos: http://www.youtube.com/daddyleer

musings:  www.lairofcachalot.blogspot.com

(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Tags: caregiving, carer, caregiver, Multiple Sclerosis, wheelchair, Hershey Park, Comet

caregiving: back to school with autism

U.S. Department of Education found that an autistic student costs an average of $19,000 a year, or triple the cost for a typical child. Where districts offer one-on-one programs and more, spending can exceed $75,000.

 

Do not make the mistake of thinking this does not affect everyone. School systems are tied to property tax in the US.

 

“The federal Individuals with Disabilities Education Act guarantees "free appropriate" public education from age 3 through high school or age 21, whichever comes first, to all disabled students. But the government has never fully funded the act.”

 

Nationwide Autism affects 1 in 150 children. In some states such as New Jersey that rate is 1 in 95.

 

20,000 students diagnosed in 1993 are in their later years of extended high school. 6X that many are now in elementary school and increasing percentages enter every year.

 

From “edutopia” the George Lucas Educational Foundation:

 

Overcoming Autism: Public Schools Deal with a Growing Problem

As the number of special-needs students soars, public schools grapple with ways to offer high-quality education without going broke.

 

(from comment section)

 

“I realize that my comments and my feelings are politically incorrect. I feel really angry about this. Why doesn't my bright creative typical child get $19K worth of resources every year? She's probably more than likely going to make a bigger impact on the future than a child with severe autism. Why can't resources be spread evenly amongst all kids? You get the best you can for your particular situation with the per capita amount for all kids in your district? Why is a child with disabilities entitled to more of my hard earned tax dollars than my own typical child???”

Sandra from Phoenix

 

Who amongst us can answer Sandra any better than we can answer a parent of “a child who by choice spent his time blocking out the world and spinning under his crib … without the education he received he would require more total care than he will in the future … and THAT will affect everyone as well.”

 

Life may be like a box of chocolates but education is not as simple as a box of crayons.

 

Caregivingly Yours, J Patrick Leer 

website: www.CaregivinglyYours.com

videos: http://www.youtube.com/daddyleer

musings:  www.lairofcachalot.blogspot.com

(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Tags: caregiving, carer, Autism, Individuals with Disabilities Education Act, back to school, edutopia

caregiving: memory loss and knee contracture

Last week included Patti’s latest Care Plan Review. Patti’s care facility schedules these sit downs every two months.

Two topics dominated conversation, is Patti’s memory/mental confusion worsening and physical therapy.

An advantage to the care facility era has been this collective comparing of notes and observations about Patti’s MS symptoms. Though when it comes to memory, I believe Patti sums it up best herself, “it sucks!”

While a MRI contrasted with a previous MRI could graphically demonstrate deterioration, what does that really tell us. “It sucks” worse?

MRI testing is an ordeal for Patti and eventually requires general anesthesia. … The patient is content with “it sucks”!

Physical therapy confronted with a most uncooperative patient, decided to try stretching her legs by splinting to address contracture. Patti now wears a SoftPro Static Gel Knee Orthosis on each knee an hour a day while napping; they hope to work this up to overnight.

When Multiple Sclerosis causes loss of movement in the legs this triggers changes in the muscle, tendons and ligaments which in turn complicates bending or straightening.

In Patti’s case this has worsened to severely impacting transferring.

When I transfer her myself, now days I have to just dead lift her up because her feet practically tuck up under her when lifted.

The other day I arrived to find three staff members PLUS a mechanical lift needed to change and dress Patti, again knee contracture the major culprit.

MS symptom relief research is rare among US Multiple Sclerosis organizations; fortunately that is not the case with the UK Multiple Sclerosis Society.

Their study “to investigate the effectiveness of stretching the knee and then positioning the leg in a splint for two hours” I believe is worth a visit to mssociety.org.uk and the 6 minute video presentation, Relieving tight painful joints.

(Some of the Scottish accents may leave Americans wondering if we speak the same language. <grin>)

Or better yet, the Care Plan Review in Patti-speak: “MS sucks! … Why are those birds so loud? … Those knee things are annoying. … When do I get a cigarette?

Caregivingly Yours, J Patrick Leer

website: www.CaregivinglyYours.com

videos: http://www.youtube.com/daddyleer

musings: www.lairofcachalot.blogspot.com

what can friends do to help someone who is a caregiver (Pt 4)

Part 4 ... what can friends do to help someone who is a caregiver?

#7 Many caregivers find themselves longing for companionship with others who are going through the same situation.

Some caregivers, well actually two that I know of, were pondering and discussing taking this thought into uncharted territory.

Can two caregivers of two different conditions (Multiple Sclerosis and Autism) supporting each other equal something better?

32 combined years of experiences with family caregiving is more than a resource, it IS a force.

Family caregiving traditionally has no safety net. An in house back-up is revolutionary.

You never retire from caregiving. … “Well, pilgrim, what are ya gonna do?”  Why not kick the box open and pioneer a new trail?

Caregiving is life on the economic brink. Shared expenses could be a step back from that edge.

Splitting chores and errands could be the alchemy to creating more time.

Being able to wind down and wrap up each day’s unique life of caregiving with another caregiver is inconceivable, or is it?

Readers of ‘Caregivingly Yours’ met Jennifer and Tyler in “caregiving: fortunately smiles speak”, additional visits have yielded more success than challenges.

                       

Outings with our unique posse diffuse the impact of disability. Is there strength in numbers?  

Visiting our local high school, Jennifer left feeling it is as good if not better for Tyler’s autism related specific needs.

Fate dealt the cards this past winter when their home in Massachusetts changed from years of stability to unknown. We have the extra bedrooms and bathrooms to begin the journey.

Patti’s memory and attention span challenges discussion. When she does focus, her awareness of the demands and toll of caregiving on caregivers is sensitive and concerned. She has enjoyed the visits and companionship. Important to her, this should create more time for outings both collectively and separately.

Like many 20 yr olds Megan’s world revolves around her and lies beyond. Even though I have repeatedly offered her veto over the idea, she has been a solid supporter since earliest discussions.

So in a week, we again open our home and in a sense we all jump off that proverbial cliff together.  

Butch Cassidy: Then you jump first.

Sundance Kid: No!

Butch Cassidy: What's the matter with you?

Sundance Kid: I can't swim.

Butch Cassidy: Are you crazy? The fall will probably kill you.

Caregivingly Yours, J Patrick Leer 
 website: www.CaregivinglyYours.com

videos: http://www.youtube.com/daddyleer

Tags: caregiving, carer, spouse caregiver, Multiple Sclerosis, Autism, Caregivingly Yours, friends, caregiver

what can friends do to help someone who is a caregiver (Pt 3)

Part 3

#5 Help the caregiver get away from their everyday responsibilities. Provide opportunities for play. 

I would reverse this; help the caregiver “with” everyday responsibilities. Companionship for errands or outings is invaluable.

Having an extra set of hands along revolutionizes outings. Unable to leave Patti unattended, I can never drop her off at the entrance to anywhere and park.

In the early years there were no ‘family restrooms. My presence in a women’s room either to accompany our young daughter or to assist Patti seemed to unnerve other women. Come on now ladies, unlike a men’s room all the stalls have doors.

Ventures into women’s clothing departments both as a spouse caregiver and a single parent of a daughter were travel to another galaxy. Men’s clothing is a function of width and length, a female translator would have been soooo welcomed.

More often than not caregiving is opposite sex. In our story not only was caregiving opposite sex but so was basically single parenting. My first attempt at buying feminine care products could have been a candid camera skit. <grin>

I simply approached women shopping in the feminine care aisle, “Excuse me, do your prefer a tampon or a pad?”  or “Why does one want ‘wings’ on these pads?” and so on. Shoppers stared at me dumfounded as if I was an alien and hurried from the immediate vicinity. <grin>  …

#6 Help keep humor in the lives of the caregiver and receiver.

Yes, humor above all! However even just sharing your life is appreciated. We live vicariously through others. <grin>

Fortunately humor often finds me. Not so long ago, I was in a check out line holding a package of feminine care pads ‘with wings’ when an unusually heavy gentleman notices my package and conversationally though loudly remarks, “Hemorrhoids? Huh? ‘Wings’ are the only way to go! That’s what I use.”

Even though the image is forever scared in my mind, you can rest assured that conversation kept humor in our lives for weeks. <grin>

(Oops! Approaching that 350 word cap on entries … to be continued … only one to go!)

Caregivingly Yours, J Patrick Leer
website: www.CaregivinglyYours.com

videos: http://www.youtube.com/daddyleer

Tags: caregiving, carer, spouse caregiver, Multiple Sclerosis, Caregivingly Yours, friends, caregiver

what can friends do to help someone who is a caregiver (Pt 2)

Part 2: what can friends do to help someone who is a caregiver

Time gets so out of sync when caregiving that it may as well be a parallel universe. This challenges communication.

Concerns about disrupting caregiving or a ringing phone waking a napping person with MS or even a caregiver who is catching a quick power nap create a communication maze to get through.

By the time I finished juggling each day's caregiving needs for Patti and basically single parenting our daughter it was late. West Coast friends were my only possible ‘conversations’.

Don’t rule out email. It enables communication when convenient.

The thing is if you are genuinely committed to being a friend and helping, it will not be easy but it will be appreciated. Stay with it.

#3 Get to know them better. Share their feelings. Be genuine.

This was penned by a visionary. Over time caregivers too often become shadows of the person in need.

Remember unlike the person being cared for your friend ‘chooses’ to be a caregiver. Believe me they have a vault of feelings to share.

Getting to know your friend better, I would venture to say that you may also get to know yourself better.

#4 Give the caregiver opportunities for leisure time. Stay and watch the care recipient while others go to dinner or a movie.

In principal a great idea, however the reality of the level of disability or care required could determine this option.

We were blessed that Patti’s parents could host Patti when they were younger and Patti was less disabled. This support enabled our daughter and I to spend ‘able bodied’ time together, hiking in the mountains, boogie boarding at the beach … parts of childhood and parenting that we would not have been able to experience.

“Dinner or a movie” reads kind of frivolous but empowering ‘moments in time’ can be priceless.

(Oops! I’ve hit my 350 word cap on entries … to be continued)

Caregivingly Yours, J Patrick Leer
 website: www.CaregivinglyYours.com

videos: http://www.youtube.com/daddyleer

Tags: caregiving, carer, spouse caregiver, Multiple Sclerosis, Caregivingly Yours, friends, caregiver

what can friends do to help someone who is a caregiver (Pt 1)

Caregivingly Yours is often surprising interactive. Recently I received a most kind email including a question about what can friends do to help someone who is a caregiver. 

I cannot speak for other caregivers but in our story most friendships have faded over the years as my life as a spouse caregiver become so different than anyone else.

Now don’t go getting Lifetime Channel on me and claim ‘real’ friendships last forever. Traditionally friendship is a two-way street. Caregiving consumes ALL available time. Friendship is a challenge.

Since I certainly have no personal formula for success, I Googled the question and found a collection of 7 tips from Ohio State University, Care for the Caregiver.

With due respect to the Buckeyes I will borrow their tips as a framework and insert my experiences and thoughts.

#1 "Ask how the caregiver is doing? How are they coping? Be sincere in your efforts and be willing to listen to their response."

“How are YOU doing?” or “How are YOU feeling?” still is such a rare question that it often throws me, though always in a feel good way. This is a great tip.

As for coping, I would say NEVER ask. That cannot come across well, “Hey dude! How are you coping?”

As for being sincere and listening, this would be a treat to any caregiver. Please LISTEN do not just hear. PLEASE no condescending hyperbole.

Ask questions. Learning makes you easier to talk "with". 

#2 "Be understanding and compassionate. Don't try to give advice or fix their lives. You are a friend."

NEVER try to give advice! Even caregiver to caregiver you will not find advice being ‘offered’ unless asked for.

As for fixing any caregiver’s life, <grin> if a superhuman caregiver and God cannot do it where did you come up with the answer? Bite your tongue. Shhhh!

Even though caregiving is exhausting, the loneliness can be incomprehensible.  Understanding, compassionate friendship would be appreciated beyond your imagination.

(Oops! I’m approaching my 350 word cap on entries … to be continued)

Caregivingly Yours, J Patrick Leer
website: www.CaregivinglyYours.com

videos: http://www.youtube.com/daddyleer

(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Tags: caregiving, carer, spouse caregiver, Multiple Sclerosis, Caregivingly Yours, friends, caregiver

caregiving: an evening at the races

Hollywood Casino at Penn National Race Course is surprisingly not wheelchair friendly. 

                             

Arriving I followed signs to “accessible van parking”.  Spaces designed with adjacent area blocked out for ramps or lifts to deploy. However, every space was occupied by a regular passenger car. … Instead we cruised the parking garage looking for an end space on an aisle to deploy the ramp. 

Doors from outside to inside whether off the parking garage or to the casino display a wheelchair access sign but we could find NO controls. An unattended person in a wheelchair would be hard pressed to open and enter outward swinging doors.

Beware! There is a crisis in South Central Pennsylvania with people moving furniture. Every chair in front of a slot machine was bolted to the floor. Management must assume people only use wheelchairs or scooters for convenience not necessity.

Yes, you can find a manager who can direct you to a security officer who can contact a security supervisor who can contact a maintenance engineer who can unbolt and remove the fixed chair to allow wheelchair access. That took 20 minutes on a non-busy Wednesday evening.

I believe I dead-lifted transferred Patti half a dozen times in and out of her wheelchair to a bolted chair to check out machines before choosing one. Everything from color contrast to height or slope of machine face can affect Patti's MS related visual challenges.              

Pictured are Patti, her Mom, and top of her Dad's head enjoying the ‘chosen’ slot machine.

A highlight was Penn National Race Course adjacent to the Hollywood Casino. Literally roll out the casino door and you are at the track.

Patti’s wheelchair could basically park at the rail. Between proximity and the size of a horse and rider it was visually impaired friendly entertainment.

              

Washed by an earlier summer thunderstorm the evening could not have been more beautiful. 

          

Never confuse accessibility challenges with a good or bad time. Caregivers, family, and friends can usually overcome obstacles.

Good times are CREATED from time spent together. 

Caregivingly Yours, J Patrick Leer

website: www.CaregivinglyYours.com
videos: http://www.youtube.com/daddyleer

Tags: caregiving, carer, spouse caregiver, Multiple Sclerosis, wheelchair, accessibility, Hollywood Casino, Penn National Race Course, Harrisburg, Pennsylvania

caregiving: bedtime routine

Patti’s MS fatigue leaves her exhausted by 8 PM. Even though Patti resides safely in a 24/7 care facility I prepare and tuck her into bed 4.5 nights per week. 

 

Bedtime routine has become ‘show time’. While most of the below also attempt to creatively address symptoms the main target is the mental health of laughter.

 

Teeth brushing – I push Patti into the bathroom to have her brush her own teeth at the sink. While more like playing in the sink, I believe it is important for her to keep trying as long as she can. … When she rinses with Listerine, my sound effect screams of dying germs often causes a burst of laughter to expel the mouthwash rather than a simple spit.

 

Tissue Toss Basketball – Patti likes to blow her nose and can get obsessive about it. I created this game where I park her near a wastebasket, put a tissue box on her lap, and let her blow her nose and try to toss the tissue in the wastebasket.

 

I provide sports caster commentary while I prepare her bed, turning down sheets and spraying linen with scented mist.

 

De-Blinging – Removal and discussion of any jewelry in my best red carpet interview style.

 

Dancing Nightgowns – Medical style dressing gowns are always folded up in squares. I unfold it with a magicians flourish and dance with the gown for several seconds singing “I Feel Pretty” from West Side Story. For whatever reason, this always sends Patti into peals of laughter.

 

This scene concludes as I transform into my “spraying mantis” incarnation spraying Patti with body mist.

 

Tossing the disabled – With all the flourish and sound effects of ESPN or Professional Wrestling I announce tonight’s main event, then pick up Patti and put her into bed. Finishing with the traditional wrestling three slap on the bed denoting a pin and doing a victory dance around the room.

 

I’ve wondered what bedtime is like when I am not there. Last week one of the staff happened in and decided to pull up a chair just to watch. 

 

What's in your bedtime story? <grin>

 

Caregivingly Yours, J Patrick Leer 

musings:  www.lairofcachalot.blogspot.com

website: www.CaregivinglyYours.com

videos: http://www.youtube.com/daddyleer

 

(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Tags: caregiving, carer, spouse caregiver, Multiple Sclerosis, care facility, bedtime

caregiving: communicating

We live in an extraordinary age of communication. Most of us communicate effortlessly. 

 

Effortlessly is good, assuming that everyone else 'can' is something we all need to work on.

 

Patti’s MS symptoms create a dangerous kind of pot luck communication, visual impairment (legally blind), cognitive impairment, and memory loss

 

Patti can ‘appear’ OK. In conversation, a well intended guest might offer her food that could have catastrophic results with her MS related dysphagia. She is not going to say “no” to something sweet, but she is going to forget to chew and swallow without verbal cues. Also unable to direct her own care, a simple medical or care question from a stranger could be disastrous.

 

Telephones are so challenging both cognitively and physically for Patti they are rarely used. "Reach out and touch someone" is not in her world and could put her at undue risk if unattended.

 

In the communication challenged world of autism, schools and families use symbols.

 

Archeologists believe we have been writing with symbols since 6,000 BC.

 

Writing With Symbols 2000 is a symbol processing program by Mayer-Johnson. You type as usual except text and associated symbols appear on screen.

 

While most schools or families primarily use only the symbol processor part, the program can also empower verbal sharing. When the student is creating their text, they can have the words spoken back to him or her. 

With this note above, if using a PC with Writing with Symbols, pausing the mouse over a symbol speaks the word. You can use standard icons or insert your own pictures.

 

Social stories created with such software are a foundation in autism caregiving. A story is created, reviewed and rehearsed with a parent or caregiver and then the story is used to guide behavior.

              

Long ago as a speech communication major at the University of Maryland I was always intrigued by an axiom offered by a communication theorist, Paul Watzlawick, “Man kann nicht nicht kommunizieren.” (One Cannot Not Communicate)

 

Yes, communication challenges can isolate. However, families and friends also speak even when they say nothing at all.

 

Caregivingly Yours, J Patrick Leer 

musings:  www.lairofcachalot.blogspot.com

website: www.CaregivinglyYours.com

videos: http://www.youtube.com/daddyleer

 

(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Tags: caregiving, carer, spouse caregiver, communication, Multiple Sclerosis, Autism, Writing With Symbols, Mayer-Johnson, social stories

caregiving: what is it like to live with Multiple Sclerosis?

Succinctness is important in caregiving journaling. Time is precious for readers.

 

I target no more than a minute or two of a reader’s time with a word count cap of 350 words.

 

“International average reading speed is accepted to be about 250 words per minute” Turbo Read Speed Reading

 

Bea, of AOL Journal, “Wanderer” (until a more suitable name presents itself) recently raised the bar pointing out how gifted writers can tell a story in only 6 words.

 

Did you know that in speaking English people average about 100-120 words per minute? Try timing and reading your entry out loud to yourself, is anyone still listening? <grin>

 

Over on YouTube the average video is 2 minutes. In this 21st Century as harried people turn to view information, this may ‘say’ more than words.

 

With all this said, I am going to make an about face exception and embed this following 8 minute YouTube video by Kristie Salerno Kent.

 

It is not only creative but an excellent attempt to demonstrate Multiple Sclerosis symptoms and what it is like to have MS.

 

Not the chronic progressive type like Patti, but there was a time that Patti too went through these more common remitting remissive symptoms of MS.

 

[Time Alert] Stick with it, after the first two and a half minutes she visits a mall and the video becomes genuinely extraordinary.

http://www.youtube.com/watch?v=6oraM8IF2Gc

 

Caregivingly Yours, J Patrick Leer 

musings:  www.lairofcachalot.blogspot.com

website: www.CaregivinglyYours.com

videos: http://www.youtube.com/daddyleer

 

(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Tags: caregiving, carer, spouse caregiver, Multiple Sclerosis, Kristie Salerno Kent, AOL Journals, Wanderer, Caregivingly Yours