Saturday, February 26, 2011

greying of caregiving

Age masquerades behind gaily decorated masks of seasons, sunsets, and sunrises relentlessly stealing abilities. More than any members of the family of caregivers / carers those who care for children, of any age, with special needs or disabilities know, feel, and battle the relentless challenges of time. - The heart of caring beats on regardless of differences in age but the body may be another story. 

When a lunch outing between an 80 year old caregiver parent who picked up her 37 year old daughter from an Association for Retarded Citizens group home turned into a 500 mile, 57 hour ‘missing endangered’ odyssey this tells a story of both the challenges of age and the heart of a caregiver - fortunately a story with a happy ending.

“They apparently went to lunch and filled up the gas tank of the mother’s car, but got turned around …”

“Police label them as "missing endangered" because of the mother's age and the daughter's diminished mental capacity.”

"They were disheveled. They did appear to be in good condition," said Trooper Tom Pinkerton. "People go lost or missing every day and there's not always a happy outcome …” Police give details on finding of missing woman, daughter 

Miller says she stopped several times to ask for directions. "I am so grateful to be home, I can do nothing but thank the Lord for that …” said Miller. Elderly Mother Talks About Being Lost For Days  

Pundits babble on about the ‘greying of America’ from retirement living to its affect on the restaurant business. Seemingly lost among talking points of problems elderly people face is the reality that caregivers / carers are also greying, maybe even faster.

“Whistle through your teeth and spit
Cause it's all right.
Oh well a Touch Of Grey
Kind of suits you anyway.”
Grateful Dead 

Caregivingly Yours, Patrick Leer 
web site: 

Wednesday, February 23, 2011

financial planning for family caregivers

Patti and I navigated ourselves (perhaps stumbled is a better choice of words) through the financial forest when we began our journey decades ago. Nothing like this 'free' webinar existed.  

From NFCA National Family Caregiver’s Association:
Reaching Out for Financial Help

These are a few of the questions you have asked us.

This free webinar will get you answers that you need.

February 24th
2pm - 3pm ET
Register Now. Get Answers.     

NFCA is proud to bring you the first in a new series of free webinars all about financial planning for family caregivers. Our partner, Allsup Inc. , has expertise and exciting ideas on how to make the most of what you have and get more of what you need.

To attend the free webinar, all you have to do is register. Once you register, you will receive instructions on how to join the webinar on line. Its that easy. Just click here.

Register Now. Get Answers. It's Free 

We hope you will join us. We know that caregiving is hard enough without having a hard time finding answers to your questions.

I’d especially like to thank Lisa Winstel with NFCA for taking a moment to step from cyberspace into an ol’ fashioned phone call to confirm details and NFCA affiliation.

Caregivingly Yours, Patrick Leer 
web site: 

Saturday, February 19, 2011

wheelchair accessible glider swing

We were trying to think of when ‘we’ were ever last on a glider swing?  There was a variation on Megan’s childhood jungle gym in the backyard but Patti’s Multiple Sclerosis prevented her ever sharing that.

Join us for 40 seconds as Patti and I enjoy a wheelchair accessible glider swing on a 72°F (22.2°C) February afternoon in Pennsylvania.
Living with Multiple Sclerosis as a family it hasn’t always just been the wheelchair but MS symptoms such as balance and fatigue that can make family life different always weighing risks against rewards.

This WhisperGLIDE model enabled Patti to remain in the safety and security of her wheelchair and even has a table in the middle with recessed cup holders.

Wheelchair access to the simplest things in life can make for more than a beautiful day. When you can do things together time is not measured by the sound of a ticking clock but rather the sound of smiles.

Caregivingly Yours, Patrick Leer 

Thursday, February 17, 2011

MRI and Multiple Sclerosis

Multiple Sclerosis awareness can take many paths including ‘trivia’ and Facebook.  

The National Multiple Sclerosis Society--Central Pennsylvania Chapter - TUESDAY TRIVIA: What year was the first MRI brain scan performed? Where was it performed?
XXXX I remember reading somewhere that the first MRI on a human was done in 1977 and took over 5 hours to get one picture. Not sure where or if it was done on the brain. May have to research that.

YYYY July 3 1977

XXXX I had the same date but wasnt sure if it was a brain MRI and had no idea where it was done. That's a tricky one.

Patrick Leer - No idea but Patti's first MRI was in 1985 and medical insurance would NOT pay because in those days it was not considered a diagnostic tool for MS even though the results led to the DX. Not only did we get a 'probable' MS DX but an out of pocket bill for, if memory serves me correct, around $850 in those days.

The National Multiple Sclerosis Society--Central Pennsylvania Chapter - This was a bit of a trick question! 1977 was the year the first MRI was ever done. However, the first MRI scans of people with MS were performed in 1981 by Dr. I R Young, in England. By 1984, it became apparent that MRI could actually see MS attacks within the brain, including many which did not cause any symptoms.

By 1988 sequential MRI scans changed the entire concept of MS by showing that it is a constant, ongoing disease even though relapses with symptoms may appear only sporadically.

Patrick Leer Thank you all this was an interesting perspective on timetable of medical technology and MS.

Previous "Tuesday Trivia" have included 'name one of the many symptoms associated with MS', 'name the first oral med used to treat relapsing MS approved by FDA' ... drop on in Tuesdays on Facebook at NMSS Central Penn.

Caregivingly Yours, Patrick Leer 

Monday, February 14, 2011

Memory loss, valentines, Disney hell or heaven

Patti is subject to a unique media and social barrage of Valentine’s Day hype in that her short term memory loss repeatedly wipes the old etch-a-sketch in her head clean then refills it and on and on.  Valentine’s Day, for personal reasons is not a favorite of mine, yet as a caregiver I try to take a path of stoic indifference to my own feelings. Whether Multiple Sclerosis related or ‘selective’ memory loss, we both arrived at the same point - any excuse for an outing is a holiday.
Restaurants may be accessible but on a night as crowded as Valentine’s Day a wheelchair may as well be a tank in a street demonstration.

So we decided why not eat desert first. Stopping by Helena’s Chocolate Café and Creperie in Carlisle, PA for a chocolate fix we found it surprisingly not crowded and ended up enjoying a chocolate dinner. Chocolate and strawberry crepe washed down with hot dark chocolate for Patti and a chocolate crepe and café mocha for me. As the crepes were prepared one at a time we were easily able to appear to share our food (taste this) rather than me help feed Patti. 
Telling Patti about a news story of a guy suing Disneyland for being stranded on “It’s a Small World” ride, Patti laughed and laughed as she ‘remembered’ that pre-MS the same thing had happened to us, except at Disney World no one was evacuated and the dolls just kept singing and singing.

Stranded? No way! I was in Disney Heaven clapping and singing along with the dolls while Patti and others were in Disney Hell ready to tear their brains out.  Thank God there were children aboard as I had a growing suspicion my boat mates were considering throwing me overboard.

As we laughed over the memory, I thought of the decades since and well …
“it's a world of laughter, a world of tears
its a world of hopes, its a world of fear
there’s so much that we share
that its time we're aware
its a small world after all”

Caregivingly Yours, Patrick Leer 

Sunday, February 13, 2011

knee contractures Multiple Sclerosis

Mobility is so archetypal I believe there is a tendency to simply ‘deal with’ restricted mobility in Multiple Sclerosis rather than try to work with it which invites increased risk of joint contracture. I have no alphabet after my name and my only evidence is our story of Patti’s Multiple Sclerosis progression and my 21+ years of caregiving.
With progression of physical and cognitive symptoms of MS, falling was the clear and present danger, yet in retrospect joint contracture was an increasing stealth danger.

For example, once Patti could no longer safely transfer from her wheelchair to our car we ‘dealt with’ restricted mobility by purchasing a wheelchair accessible van. Safer yes but now Patti barely used her legs.

At her care facility assisted transferring by staff evolved from stand-up lifts to sling lifts.

Only I continued to use the one person transfer technique – the hugIt was this continuing involvement and use of the one person transfer that triggered the treatment of knee contractures.

At a recent Care Plan Review I had to smile as Patti is less than cooperative about her SoftPro Static Gel Knee Orthosis but here again in the care facility era  shifts of staff and perspectives eventually found the way that works. Patti is not a morning person and prefers to lounge / nap in bed rather than get up so staff has found that putting them on for two ‘lazy’ hours in the AM saves butting heads with her the rest of the day when therapy could conflict with anything or everything.

On the end result side of the equation, Patti’s ability to extend her legs is better than it has been in years and one person transfers critical to her outings are safer for both of us.

As is too often the case with MS, no one magic bullet addressed this symptom. It took teamwork, it took thinking outside the MS modalities of therapy box, it took my near daily involvement with the care facility era, and above all it took the mindset of ‘working with’ rather than ‘dealing with’ restricted mobility.

Related entries: 

Caregivingly Yours, Patrick Leer 

Wednesday, February 09, 2011

apps for caregivers / carers

When did caring become an “app”?

Caregiver Apps are emerging as invaluable caregiver tools” claims Apple’s iTunes.  Alzheimer’s Apps may improve the quality of life for those who have some form of dementia by featuring apps that calm, engage, and/or lift spirits.” 
Caring for someone with autism, diabetes, Alzheimer’s, mental illness, physical ailments, medications, pain, seizures, asthma, allergies, or just want to record the reminiscences of a loved one who may not be around that much longer? Five smartphone apps for caregivers “Given the growing popularity of smartphones among baby boomers it’s only natural they’ll be looking for apps to help, said Gregg Malkary, managing director of Spyglass Consulting Group, which specializes in health-care and information technology.” 
While I can see this all as helpful to those fond of gadgets especially as they start their journey, I do wonder about the shock of discovering that caregiving is more often than not ‘hands on’. Interaction and companionship is irreplaceable.

Plus I have to wonder - increasingly when out with Patti I have to dodge her wheelchair around able bodied walkers oblivious to all around them hypnotized by their smartphones. If I was not caregiving with my ‘eyes’ and ‘hands’, they would crash right into Patti’s wheelchair.
If you drop a smartphone in the snow fogetabout those caregiving apps but find a real caregiver / carer in the snow and likely they are just making a snow angel.

Of course I only own a garden variety cell phone so I really cannot say whether these apps would improve either my life or Patti’s. I suspect in the hands of the right person hand held technology may seem a godsend.

Maybe you have to be of a certain age but it’s all too reminiscent of the beginning to “2001 Space Odyssey” (1968) when apes first see the black monolith, except now hominds gather around holding lil’ black monoliths in their hands. ... Dawn of man to dawn of technology, when is the dawn of care?

Caregivingly Yours, Patrick Leer 

Monday, February 07, 2011

"Maybe it was fate?"

Reading an interview with Mark Kelly on his conversations with his wife Rep. Gabrielle Giffords that “maybe it was fate … maybe something good can come of this” brought back so many memories of the beginning of our journey of living with Multiple Sclerosis as a family.

When life changes so suddenly the search for why is paradoxically a necessity and a detour in route toward acceptance.

People want words when there are only emotions. Fate can be a difficult window to close once open.
Living in a media fishbowl their lives are told by scurrying pundits reporting, analyzing and interpreting everything for us. Frankly I am surprised that two associated occurrences have escaped this fascination for ‘teachable moments’.

Never has the ‘care gap’ been more demonstrated than between the acute medical attention and rehabilitation support for Rep. Giffords and treatment of a Viet Nam Veteran, Ron Flannagan. Veteran's health insurance restored after 2-cent brouhaha 
 "You shouldn't have to figure out how to get your story into the media in order to get help with something like health care that can be life-threatening." Dede de Percin, director of the Colorado Consumer Health Initiative
Understandably Mark Kelly personally weighed returning to space flight training or being part of his wife’s rehabilitation. Isn’t it also understandable in the bigger picture at this time in our country to weigh the merits of our space program? 

As a kid, I remember standing out with our whole neighborhood staring into the sky for Sputnik. Yet for 20+ years now I’ve looked into Patti’s eyes as Multiple Sclerosis has slowly robbed her physical and cognitive abilities. Seems to me the money, science and resources of that once 'race to space' could be refocused on a 'race to care' for people on Earth.

If there is any lesson I have learned from the decades it is yes, certainly find the good in life when bad things happen, but also never forget that something bad happened to someone. Their life is not film noir. Care is about choices.

Caregivingly Yours, Patrick Leer 
web site:  

Wednesday, February 02, 2011

winter caregiving

Caregiving in winter is as much about the caregiver / carer as tools. The only guarantee is that with each winter the carer / caregiver gets older, and with winter weather the unexpected is to be expected.
Contrasts between home care and care facility care are unquestionably amplified in winter. In a care facility, options for acute medical care, prescriptions and care needs are already in place or come to Patti. Homecare faces transportation and accessibility challenges through every minute of any and every winter storm. How often is a snow plow going to appear and get you to medical care?

When able bodied people are struggling to get around, the mobility challenged can ‘fogetaboutit’. Streets may get plowed but wheelchair curb cuts won’t be seen until Spring thaw.

Just last Winter, my car was totaled returning from work in pre-blizzard hours and I was stranded for two nights away from home. Fortunately Patti was safe and warm in her care facility. Home alone and non-ambulatory from Multiple Sclerosis, confused and unable to use a phone God only knows how that could have played out. My best Plan B from the home care era never actually anticipated anything happening to me.    

Winter caregiving is not only about about worse case scenarios, sometimes it’s about getting out to enjoy winter. In our earliest days of living with Multiple Sclerosis as a family, I shoveled cubic football fields to empower Patti as she pulled sleds through the streets on her scooter.
MS progression has affected Patti’s physical and cognitive abilities in the eighteen winters since scooter sleigh rides but not the spirit that answers to the north wind. Just last night storm running a forecast of freezing rain and ice I picked up Patti from her care facility for an outing of hot chocolate and ciggies. Tucking one happy camper into bed, I drove home climbed out of our van only to find myself stepping onto a sheet of ice and reflexively pulling off a damn good figure skating lunge to the bottom of our driveway.

Respect winter, yes, but more importantly embrace it.

Caregivingly Yours, Patrick Leer 

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