Caregiving: economics & a helping hand

Home caregiving is an economic free fall. For us, ‘upwardly mobile, double income’ to ‘functional poverty’ has been an ever tightening screw over 22 years of living with Multiple Sclerosis as a family.  It impacts every step of the journey for every member of the family. Savings and resources are steadily exhausted to supplement shrinking income. This reality is not specific to MS and callously and steadily devours most home caregivers.

 

Increasing demands on any caregiver’s time reduce earnings. With spousal caregiving family income and benefits are devastated when a partner and income earner becomes a dependent. In other situations should divorce disrupt or end child support and/or medical benefits the result is catastrophic.

 

No Biblical parable needed here, it's simple "choose your master” – family or money.

 

Grants and gifts are an oasis. Without help some things would simply not be possible.

 

In Saturday's mail was a check for $700 from Central Penn Chapter of the National MS Society, a financial assistance grant for Patti which represents two monthly payments on our wheelchair accessible van.

 

That wheelchair accessible van is Patti’s portal to the outside world.

 

I want to express our gratitude to Syria Harrell, Information and Community Specialist with the Central Penn Chapter office who genuinely seems to ‘get it’ about living with chronic progressive MS.

 

Thank you, Syria and the Central Penn Chapter of NMSS for helping to make living with MS as a family and Patti’s freedom of movement a bit more possible.       

              

Caregivingly Yours, Patrick Leer

http://www.youtube.com/daddyleer

Tags: caregiving, Mutliple Sclerosis, Central Penn Chapter National MS Society

Caregiving: beach wheelchair

Not every caregiver ‘idea’ is a winner. Sometimes you loose focus in a quest to accomplish a well intended goal.

 

Empowering Patti ‘back to the surf’ was just such a quest. In retrospect, ‘Duh! What was I thinking’?

 

Pre-MS, Patti and I were creatures of the surf. We sailed catamarans, wind surfed, jet skied, and even once and a while actually lay on the beach. After MS, Patti’s wheelchair was impossible to push in the sand, and her ‘all terrain’ scooter bogged down quickly in beach sand.

 

Returning to the surf appeared unattainable. … until I discovered beach wheelchairs. For many people these are wonderful for making the beach and surf accessible.

 

However, I had lost focus that sun and heat are enemies of MS, and not all people with a disability enjoy being the center of attention.

 

Patti did not particularly enjoy ‘my quest’. However our then 6 yr old daughter had a blast sitting in her lap while grandpa pushed <grin>. You can even hear me ask Patti to “fake” looking happy for the camera captured in the following one minute, 22 second clip from 13 summers ago.

caring on: Multiple Sclerosis & family – beach wheelchair

         

(Some readers have noted they have challenges using the AOL video display. For your convenience you can simply use the links to view the video directly.)

You Tube

http://www.youtube.com/watch?v=FfSq9pUZjkM

Google Video

http://video.google.com/videoplay?docid=-7456340779559250253

 

Looking through old beach photos, it occurred to me that it may be easier to see ‘what is Multiple Sclerosis?’ in pictures of people than a journal full of words.

         

              

Caregivingly Yours, Patrick Leer

http://www.youtube.com/daddyleer

http://www.myspace.com/patrickleer

Tags: caregiving, Multiple Sclerosis, beach wheelchair, Ocean City MD

Caregiving: MS & Family

“EVERYBODY looses something”. This phrase has been swirling around in my head since watching a You Tube video on ‘Family & MS’ produced by the MS SOCIETY (“UK's largest charity for people affected by Multiple Sclerosis”).

 

Sandy Burnfield, who is both diagnosed with MS and a child psychiatrist, talks about “some of the family issues that multiple sclerosis can bring about.” Family & MS - Part 01

 

Sandy labels it the “dark side” of Multiple Sclerosis. Too often I have found material offered by MS organizations is somewhat perky and has left me wondering what ‘we’ were doing wrong over these 22 years of living with ever progressing MS as a family. Kudos to the Brits on some straight talk. God Save the Queen!  

 

While yes “everybody looses something” a family can also find something else. I, for example, found the gift of becoming the nurturing and basically single parent for our daughter from the age of 18 months on. Men are rarely enabled with such an opportunity.

 

Anecdotal evidence I know proves nothing but it can provide a glimpse. Fatigue is a dominant symptom of MS. Patti’s constant fatigue and need for periodic bed rest controlled our family activities. Rather than let bed rest disrupt family, while Patti rested Megan and I would simply use the time for “us”.

 

Play Doh and ‘the shell game’ were two of our favorite father daughter activities. <grin> In our old video archives I found this one minute animation Megan (then 7 yrs old) and I made one afternoon while Patti rested.

 

caring on: Multiple Sclerosis & family - the shell game

(Some readers have noted they have challenges using the AOL video display. For your convenience you can simply use the links to view the video directly.)

You Tube

http://www.youtube.com/watch?v=hdq1hOcBXx4

Google Video

http://video.google.com/videoplay?docid=4846487570621064129&hl=en

 

Yes, there is a “dark side” to living with MS as a family and “everybody looses something”. To me, it falls on the caregiver spouse to create balance.

 

No, it is not easy but you may just “find” something even more valuable than you lost.

 

Caregivingly Yours, Patrick Leer

Tags: caregiving, MS, Multiple Sclerosis, family, MS Society, Sandy Burnfield, shell game

Caregiving: aces & kings

Friday night we enjoyed a one man lollapalooza so talented he has to label himself with the multiple personality stage name “Buc Hill Aces”. We are referring to our friend and entertainer Brian Lockman who we visited at the Crimson Frog Coffeehouse in Camp Hill, PA.

 

Saturday Patti, myself, and Patti’s parents went to watch the “sport of kings” or Polo. Our Central Penn Chapter of National MS Society was sponsoring its second annual MS Polo Match.

 

None of us had ever been to a polo match. (I wonder if Homeland Security is aware the game began as a training exercise for ancient Iranian cavalry? <grin>) … Anyway you are invited to join us below for three minutes as we ‘discover’ polo in Mechanicsburg, PA.

(Some readers have noted they have challenges usingthe AOL video display. For your convenience you can simply use the links to view the video directly.)

You Tube

http://www.youtube.com/watch?v=vdqD8vMAnjQ

Google Video

http://video.google.com/videoplay?docid=7397605186340592974

 

I also MUST take a moment to thank “Rachael” with the Central Penn Chapter. MS fundraising and ‘living with MS’ are two different worlds. It takes a unique person ‘to care’ enough to return my call inquiring about terrain and wheelchair accessibility at a polo field. And then … since the only road and packed level parking surface was restricted to high rolling sponsors,  “Rachael” appeared on site to help me navigate driving and parking on the surrounding terrain to make sure my wheel chair accessible van did not bottom out and we had room to deploy our ramp.

 

Caregivingly Yours, Patrick Leer

http://www.youtube.com/daddyleer

Tags: caregiving, Multiple Sclerosis, National MS Society Central Penn Chaper, MS Polo Match, Buc Hill Aces

Caregiving: level of disability & ability

Since Patti’s original diagnosis of Multiple Sclerosis 22 years ago Patti has been labeled at varying times as "chronic progressive", “relapsing-remitting”, “secondary progressive”, “progressive relapsing”, and even the enigmatic “borderline form of multiple sclerosis”. Neurologists and TV weather forecasters seem to share the same gift for accuracy. <grin>

 

Pictured below are more visually oriented graphs of Patti's MS progression and resulting disappearing abilities.

          

Neurologists use the Kurtzke Expanded Disability Status Scale (EDSS) specifically for MS. Overall “level of disability” is scored on a scale from 1 to 10, with 1 being the least. Patti’s disability scores in the higher levels.

 

Activities of Daily Living (ADL) - bathing/grooming, dressing, eating, bladder/bowel, and mobility/transferring are commonly evaluated on the Modified Barthel Index of ADL on a scale from 0 to 100, with 100 being “independent”. Patti’s 'abilities' score in the lowest percentiles.

 

Numbers can identify yet the resulting picture of caring can never be painted as clearly.

 

A parent caring for a child paints with more shades of dreams. An ‘adult child’ caring for a parent paints with more hues of memories. A long term spousal caregiver paints a canvas where the years spent caring dwarf the years spent sharing.  

 

Dark brushes haunt everyone. Reaching for color takes work.

 

Caregivingly Yours, Patrick Leer

CaregivinglyYours.com

Tags: Caregiving, Multiple Sclerosis, MS, Kurtzke Expanded Disability Status Scale, Modified Barthel Index of ADL, EDSS, ADL

Caregiving: Q & A involvement

Cathy, “Dare to Think” commented:

“… I think I've discovered something about your continual positivity that baffled me at first:  it's INVOLVEMENT.  You make this a priority and by including your own needs, a viable one.  You won't mind then, if I borrow now and again from your thoughts while trying to deal with a brother with MS …”

 

Every caregiver and family or friend of anyone who is challenged or cannot care for themselves faces this.

 

I believe that you begin by committing yourself to ‘involvement’ and not on your terms but in a new and ever evolving way.

 

Beware of ‘walking away’ (literally or figuratively) from a rebuff or a disaster simply because you CAN walk away. Actions convey more than words.

 

‘Attention to detail’ and ‘sense of urgency’ make a useful mantra. I have learned to ‘advance’ involvement opportunities, ‘walk the ground’. Avoiding physical obstacles and looking for the mental and emotional obstacles in advance unquestionably improves involvement.

 

Squeezing someone into your schedule is a recipe for disaster. A dependent or challenged person cannot as simply juggle a schedule. Do not bull sh*t, carve out genuine time.

 

With time and progression there is a fine line between caring and condescending. Emotions on both sides of that line can get confusing.

 

“One cannot not communicate”. Family and friends must learn to ‘listen’ beyond verbal and to control their own wordless communication.

 

Above all please try to remember there are times any person may simply want to be alone. Respect and see the person, not the diagnosis.

 

I once read an interview with Hubert Humphrey in which he shared how he coped with dying of cancer, continuing to live daily and serve in the US Senate. He “designated” 15 minutes every day for self-pity. Staring into a bathroom mirror he would let himself just fall apart, then wash his face and go out to seize the gift of each remaining day.

 

Caregivingly Yours, Patrick Leer

http://www.youtube.com/daddyleer

Caregiving:"Elderly Neglect Themselves ..."

From the Caregiver’s Home Companion …

Elderly Neglect Themselves,

Don't Understand the Danger: Study

“…Many older adults who cannot take care of the tasks of daily life such as eating and bathing are battling a multitude of health problems with little help from family or others in their community, according to a new study….”

(Click on the blue headline for the full story.)

Caregiving: journaling

Tammy, “The Daily Warrior” acknowledged this journal in her entry ‘The Reflection Award’.

 

Bea, “The Wanderer” tagged me with her “Thinking Blogger Award” and as a “Rockin’ Man Blogger” <grin>.

 

I am genuinely honored to have been highlighted by two fellow journal writers. That these writers are women of such strength is humbling.

 

So why do I not complete the assigned awards by following directions and in turn acknowledge 5 additional journals?

 

I suspect I was traumatized years ago as I tried to assemble our daughter’s Fisher Price Sesame Street Playhouse. The directions were written in speech balloons emanating from the mouth of picture after picture of a perpetually happy Big Bird. I’ve never been the same when it comes to following directions. <grin>

 

More likely, I simply believe that too many who try to share, or are thinking about sharing, are still working through the complexity of opening their life and developing their journal skills.

 

I read and value ALL the journal writers listed to the right of this entry.

 

However IF the journal Gestapo tortured me by tearing off the hair on my body with duct tape for hours on end until I broke down and “nominated” someone. I could only cryptically babble that the most reflective, thinking, rockin’ influence is from someone who does not even write a journal.

 

Caregivingly Yours, Patrick Leer

http://www.youtube.com/daddyleer

Tags: caregiving, journals

Caregiving: jury duty

“This court summons you to be on call for jury duty during the month of October” … US District Court (Federal Judiciary). 

 

Lucky me, I believe I have hit the trifecta, having already served on County Grand Jury and Criminal Jury duty.

 

What has always been incredulous to me was that juggling home caregiving and/or single parenting was NOT a valid exemption.

 

Attempting to share my opinion with a judge was not well received. The alternative of a night in jail for contempt of his court was not worth continuing to enlighten his honor.

 

If I was a ‘certified professional caregiver’ that is excusable, but not a home caregiver. … One scenario is about ‘money’ and the other about ‘caring’. ... Go figure.

 

Grand Jury duty was a day or two a week for almost a summer. Trying to explain 'why' while dropping our then pre-school daughter off with a daycare provider each day, I would joke that Daddy was going to help the Queen of Hearts yell, “Off with their heads”.

 

Criminal Jury duty is luck of the draw. Fortunately (for me) it was a popular ‘plea bargain’ day and maximum turn over for lawyers’ pockets. I was dismissed by early afternoon.

 

Now in October it’s off to Federal court … Happy, happy, joy, joy! But by God and the Founding Fathers, YOU are entitled to a jury of your peers. … and …

              

(imagine a deep Barry White voice) “Baby, I am your peer.”

 

Caregivingly Yours, Patrick Leer

http://www.youtube.com/daddyleer

Tags: caregiving, jury duty

Caregiving: calendars & schedules

Wall calendars are the caregiver equivalent of ancient cave drawings. A 20” wide by 30” high monthly calendar has been part of our kitchen forever.

 

Through home caregiving and basically single parenting it was my alter ego. Graphically displayed in color, it emphasized what had to be done and what had just happened.

 

Now in the care facility era we have grown to two wall calendars. One hangs in Patti’s room, the other still anchors our kitchen. For example, the circles pictured below from July 2007 count and record 'family outings' with Patti.

                     

Patti’s room calendar, on the other hand, records visitors, outings, important dates, etc. Patti can somewhat see and understand it, but more importantly shifts of staff, and visitors can glance at it and get a quick grasp of what has been going on outside of her ‘medical’ news. It provides ‘reality’ to help offset Patti’s MS related memory loss and cognitive challenges.

 

At home, with the hustle and bustle of daily life it’s easy to fall into a trap of ‘out of sight, out of mind’. Walking by the calendar multiple times a day I am constantly reminded, “Are we keeping Patti involved with family and home?”

 

When someone is challenged and dependent on you, a calendar or schedule is a ‘door’ for them. If the door opens to nothing and looking back shows nothing, couldn’t that seem ominous?

 

As for me, well … there is the fun of drawing and writing with colored markers … kind of a Peter Pan kind of bonus. <grin>

Caregivingly Yours, Patrick Leer

http://www.youtube.com/daddyleer

http://www.myspace.com/patrickleer

Tags: caregiving

Caregiving: adapting media visual impairment

This evolving project of converting aging VHS tapes to DVD had its genesis in a NEED to find a way for Patti to SEE family pictures.

 

Multiple Sclerosis visual impairment prevented Patti from seeing and enjoying photographs. I found that by converting photos to DVD and displaying them on a mega screen TV that she was able to once again enjoy looking at family photos. Beginning with photo slide shows the path of trial and error led to converting aging family videos to DVD.

 

Sometimes you find gems. Re-discovering this 20 second clip felt a bit like video mining.

 

American tourists with cameras can wear down even the statuesque poise of British Royal Guards....

 

British Royal Guard sticking out his tongue    (00:23)

(Some readers have noted they have challenges using the AOL video display. For your convenience you can simply use the links to view the video directly.)

You Tube

http://www.youtube.com/watch?v=TgW4CVU4DcI

Google Video

http://video.google.com/videoplay?docid=5414311848940698511

 

Caregivingly Yours, Patrick Leer
Tags: caregiving, Multiple Sclerosis, visual impairment, Bristish Royal Guard

Caregiving: Video Genealogy

Continuing with my project of converting aging VHS tape to DVD I found myself in video alchemy as I tinkered with footage over half a century old. 

 

It is also eerie to realize that I am the only person in both videos alive. Strange but fun to spend a couple minutes with everyone ‘walking’ and ‘playing’ again.

 

NOW I am grateful someone was always sticking a camera in someone else’s face. <grin> Do not hide from cameras. Embrace them. Half a century from now you may be dusted off and restored for generations that never knew your smile.

 

(Some readers have noted they have challenges using the AOL video display. For your convenience you can simply use the links to view the video directly.)

 

Video Genealogy: (1940) Leer Family Washington, DC (02:14)

You Tube

http://www.youtube.com/watch?v=9Us2V7IjPrU

Google Video

http://video.google.com/videoplay?docid=169253810944673345

 

Video Genealogy: (1958?) Morgan & Leer Families (02:19)

You Tube

http://www.youtube.com/watch?v=xrwAT7R2W7Y

Google Video

http://video.google.com/videoplay?docid=4724050279923114161

 

(Viewing notes: I am the older kid in the 1958 video. It is so odd to see men wearing shirts and ties for a casual outing in 1940 or the propeller aircraft and blimp flying over Washington, DC. My maternal grandparents in 1958 video were immigrants; my grandmother born in Ireland, my grandfather born in Wales.)

 

Caregivingly Yours, Patrick Leer

http://www.youtube.com/daddyleer

http://www.myspace.com/patrickleer

Tags: caregiving, converting VHS to DVD, Video Genealogy, 1940, 1958, Leer, Harvey, Morgan, Cavanaugh

Caregiving: eau de urine

How often in a “typical” chat between two people do incontinence, bladder accidents, and tips for clean up work their way into conversation? 

 

I am blessed with a washer and dryer in our home. Many caregivers need to use laundromats. That is an exponentially more difficult challenge including everything from social stigma of eau de urine to how to store urine soiled laundry.

 

On a worst case day with Patti at home, I must do 2 to 3 loads of incontinence related laundry. A caregiver requiring a laundromat is quickly overwhelmed.

 

Incontinence and bladder control affects not only the obvious such as clothing and bed linens but furniture, car seats, carpeting, and of course wheel chairs.

 

With the graying of America and booming sales of ‘Depend’ products it is safe to say this topic will affect more than just veteran home caregivers.

 

In our story, I guess it has been over a decade that incontinence (both bladder and bowel) has been a daily part of living with Multiple Sclerosis as a family. I’ve learned some truths, the hard way …

 

ü  “DEPEND” products cannot be imitated. Generics have not been worth the cost savings. … “Depend Boost” inserts for women, or “Depend Guards for Men” are more than worth the additional cost to improve “Depend” underwear protection especially if an outing or sleep will make changing difficult.

 

ü  After exhausting every known retail cleaning product unsuccessfully I cannot believe that as a cat owner it took me so many years to connect the dots that urine is urine. I swear by “NATURE’S MIRACLE”, available in pet stores. I use it for everything related to incontinence from pre-treating laundry, to laundry, to cleaning and shampooing furniture, car seats, and carpeting.

 

(For the record, I have never received a penny from the above products or manufacturers.)

 

Caregivingly Yours, Patrick Leer

http://www.youtube.com/daddyleer

http://www.myspace.com/patrickleer

Tags: caregiving, Multiple Sclerosis, incontinence, Depend, Nature's Miracle