can we afford chronic illness

Kent Sepkowitz, a physician and writer, certainly cut to the bottom line in a recent Newsweek:

Equine Opportunity? It's time to face the facts on expensive medical treatments

While using Multiple Sclerosis as an example because it impacts the families of both US Presidential candidates, his point is with the cost of chronic illness. 

“Medicine has reached an odd moment when our cherished American innovation and ambition have given us products that we as individuals each would want, and probably demand, but that as a society we cannot afford… 

illustration by Mark Nerys

… This is not bad news, or a “crisis,” or a watershed moment in human history; it is a simple, quiet fact. Yet neither Mitt Romney nor Barack Obama (or any politician) seems prepared to say it… 

… Perhaps the time has arrived for us to grow up and face our mortality…”

While there is certainly truth to what he is saying I still believe ‘we the people’ first need to “grow up and face” why are these treatments so expensive?

The line between “American innovation and ambition” and profiteering is too blurred to even see what we can afford.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

please take your medicine / MS and chronic illness

“Please take your medicine?


50% of chronically ill people need a better reason

People hate medicines. It’s a fact of life. As many as 50% of people with chronic illnesses don’t take their medicine correctly". Euro RSCG Tonic 5.0 Survey

Isn’t it ironic that one of the world’s top global marketing companies Euro RSCG (representing Big Pharma giants Novartis, Merck, Sanofi, and more) gets it …

… yet between Multiple Sclerosis symptoms of memory loss and mental confusion, Patti especially when prescribed something or treated with something she does not like - often tinkers with the best laid plans of mice and caring people.

When not repeatedly monitored or involved with people for the couple hours she is supposed to wear her braces for daily low-load, long-duration stretch for knee contracture therapy she simply forgets and fidgets with braces. The pads with velcro x's half way down her shins should be positioned over her knee caps. As pictured and worn they accomplish nothing.

Or recently one of her bedtime medications was changed from a capsule to liquid. Yet liquid was so foul tasting Patti gagged or choked reaching a point of refusing to take. Intervening as her POA I discovered no one really knew why the change, or had ever recommended a change. Back to a capsule all is well.

Outside looking in whether medication or therapy, how often do we see or essentially say - here is ‘your’ problem, here is ‘your’ solution, then sprinkle it with some encouraging mantra and suggest ‘just do it’.

An ever growing mountain of challenges rises with progression  - who wouldn’t need ‘a better reason’ to take or do something that at best might make you feel better than you are but less than you were. 

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

almost stone age caregiving

Keep in mind reading this entry that for the people referenced, today begins their 5th day without electrical related services.

In one New Hampshire town, 140 or so elderly and wheelchair using residents are trapped on the upper floors of a building because the elevators aren’t working. No power real concern for wheelchair-bound on upper floors

In Pennsylvania, “A tractor motor turns the generator that powers the breathing machine …She has Lou Gehrig’s disease, and her tenuous lifeline has been in place since Saturday. That’s when a rare October snowstorm knocked out power to homes …” Power outages from Saturday's snowstorm are threat for people with medical problems

In New York, “Visiting Nurse Service aide rushed around the dark house looking for a flashlight to set up a backup device that does not need electricity … It was already too late.” Halloween weekend snowstorm outage claims Bronx great-granny; lost oxygen during power failure

Are home generators the answer if you live with medical needs?

In Connecticut, “It is the latest of three carbon monoxide deaths since Saturday's massive winter storm” Carbon Monoxide Claims Another Life

In Massachusetts, “The state fire marshal says two people are dead in Palmer in what is believed to be carbon monoxide poisoning” 5 people killed in Mass. after October storm

Think having a ‘medical certification of emergency’ on file with a power company means something? – A spokesman for First Energy, parent company of Met-Ed, said “medical declarations are noted by the company but the thousands of outages from the storm make prioritizing a specific customer impractical.”

Probably too often I use a phrase “the tip of the iceberg”. Media focuses on the most dramatic. Countless others, among the over 1.5 million still without power, challenged with living with disabilities, chronic illnesses and of course their caregivers are also facing their 5th day of almost stone age living and caregiving.

November is National Family Caregiver Month and I for one find these unsung efforts heroic.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

Was long term care insurance a CLASS act?

As a society, I am convinced that we cannot even grasp much less be prepared for the crushing cost of long-term care.

Is money the only definition of cost? Families are changed forever, what about the lives lived and not lived?

How did we even get to this insurmountable gap between medical science and quality of life?

On Friday the Obama administration informed Congress that offering long term care insurance as part of Health Care reform was not “budget neutral” and therefor unsustainable.

Secretary Sebelius’ Letter to Congress about CLASS (Community Living Assistance Services) and attached Health and Human Services Report.

Of course with the gnat like attention span of our society, this story barely made it out of a 24 hr news cycle.

The ‘unsustainability’ of the Community Living Assistance Services Act is not a solution. The challenge of long term care is not going away.

Here’s the bottom line - EVERYONE will one day know or love someone who can no longer care for themselves …

… and we do not have a clue how we will do it.  

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

reflections on Pat Robertson’s remarks

“Sometimes it lasts in love but sometimes it just hurts instead” (‘Someone Like You’ by Adele)

While Pat Robertson certainly kicked a hornet’s nest with his recent remarks about divorce and caregiving, hopefully when the buzzing settles down more people than before will have given some thought to the challenges of long term spousal caregiving.

Robertson was specifically discussing one person’s situation of Alzheimer’s caregiving, yet other chronic illnesses and/or disabilities, including Multiple Sclerosis take a toll on relationships. d-i-v-o-r-c-e multiple sclerosis

What caught my attention was Robertson’s caution that the divorcing spouse would have to ensure custodial care and somebody looking after their wife or husband.

The spouse caregiver should have a plan ensuring continuing custodial care and somebody to look after their wife or husband NOW, if not already. What’s divorce got to do with it? I’d bet that far more people are left without somebody looking after them due to overwhelmed caregiver plans than divorce. Yet where’s the buzz or better yet the help with this concern?

Considering oneself the ‘well’ spouse or ‘able bodied’ spouse is always a touch delusional. Statistically the caregiver life span will be shorter and unquestionably abilities and resources will only decline. Butterfly effect MS caregiving

A care plan based on the assumption of immortality and invincibility is risky. Or as Dr. Phil might ask Achilles, how’s that working for you?

Even though Robertson certainly also pushed the hot buttons of companionship, love, religion and intimacy, IMHO he concluded wisely “… the last thing I would do is condemn you for taking that kind of action.”

20 some years ago I remember typing onto a Prodigy ‘bulletin board’ that I would never judge another spouse caregiver.

This planet is too full of people judging people and not enough caring.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

pushing and rolling through nature's rage

How chronic illness / disease or disability was left out of those biblical plagues is beyond me. I suspect it has to do with my Hallmark conspiracy theory about ‘get well SOON’ cards. People just do not do duration well. Bring on the frogs and boils just as long as “the Lord spake unto Moses” – how long?

Not to make light of natural disasters but they do have an end and involve words like recovery. Multiple Sclerosis and/or MS caregiving do not involve endings nor recovery. One of the intangible aspects of caregiving is ‘crises management’, 24/7 year in year out.

Recently we rolled and pushed our way through two weeks of natural disasters: earthquake, hurricane, tropical storm, and record flooding with our wheelchair accessible van ramp lowering like the proverbial staff of Moses.

While the East Coast felt and freaked over Virginia earthquake we found ourselves out enjoying an afternoon outing in Valley Meadows Park, eerily empty of people.

We were intrigued by wheelchair switchbacks built into the Forbes Path where grade was steep. Wheelchair ‘friendly’ is a world of difference from wheelchair accessible.

Later after Hurricane Irene finished trying to huff and puff and blow the town down, it was time for rollin’ along the sidewalks.

While Tropical Storm Lee was busy dumping nearly a foot of rain over several days, well … there were always home improvement mega stores with acres under cover to roll around in.  Considering the streak of natural disasters they were also community social centers - and already decorated for Halloween!

I need to give thanks to Cumberland County Department of Public Safety Facebook Page which made moving about in real time so easy and safe.

While safety is always first, living with MS can be isolating under normal circumstances. When all anyone is talking about is earthquakes, hurricanes, and floods mix that in with MS symptoms and disabilities and it’s too easy to add worries. Sometimes you have to lower your ramp and stick your head out.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

media face of autism

Earlier this month I wrote an entry on the media face of Multiple Sclerosis and its impact on living with MS.

I found a similar concern written by Anne Dachel of Age of Autism, Autistic: Different vs. Disabled and Media Portrayal

... “I came across the story, "Being different: The marvels of the autistic world," … I thought immediately about the countless parents I know in the autism community.  Autism has destroyed their dreams, bankrupted their savings, and shattered their lives.  Who would dare to trivialize their suffering with a title like that? “ ...

  … There is a concerted effort by medical organizations and health officials to make all the sick kids the NEW NORMAL. … We're making autism into something acceptable, just a part of childhood ...

 ... What I see happening is one huge distortion of the term AUTISM.  Clearly, if we label enough people AUTISTIC, the word will lose all meaning ...

 ... The public is being led to believe that autism is something much different from what it really is.  Hidden from sight are the hundreds of thousands kids out there who are struggling with severe autism.  These are the children we never see in the news reports on autism awareness ...

 ... I've noticed over the years that the TV networks along with their big affiliates and major papers don't like to talk about approaching tidal wave of adult autism ...

   

Both Multiple Sclerosis and Autism have recently completed awareness campaigns, yet I would bet money that most Americans could tell you more about a US Congressman tweeting pictures of his body parts than what it is like to live with either diagnosis. 

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

World MS Day 2011: Work and MS

World MS Day - the last Wednesday of May each year - is an international day to raise awareness about people living with MS across the world.

The 2011 theme is ‘Work and MS’. How changes to a workplace can enable people with chronic fluctuating diseases like MS to stay in work. You can learn more at www.worldmsday.org.

People with disabilities and/or chronic diseases can be marginalized by society when their rights to access work are not recognized by employers or safeguarded by laws in their countries.

This is not about reinventing the wheel - it’s about removing obstacles to the wheel.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

butterfly effect MS parenting

Almost 20 years ago, a fellow pre-school parent introduced herself and asked if I could help her understand living with Multiple Sclerosis as a family. She was a psychologist treating a 35 yr old patient and felt her patient’s childhood and teen years raised in a family decades earlier with a parent with MS could be a factor in her patient’s adult mental health challenges. There were no professional resources on this topic.

So it seemed providential while preparing this second part to the butterfly effect entry to read in the Washington Post,  A parent’s multiple sclerosis can take heavy toll on children 

“As a teacher, Levenson came across other children who had parents with MS and who reminded her of herself at that age. She said they were “battling feelings of isolation, embarrassment and anxiety, and the overwhelming sense that no one else understands.”

The butterfly effect of a Multiple Sclerosis diagnosis impacts more than caregiving, before all else - children.

“MS can be a very frightening thing for anyone to deal with in the family but especially for children …

… it can be physically demanding on a child if a parent is unable to walk properly and has to use a wheelchair ...

… If a parent can’t feed themselves very well the child maybe brought in to help … embarrassing and almost a role reversal really with the child becoming the parent and the parent becoming the child ...

... Cognitive problems in a parent can be very frightening. If a parent isn’t able to think properly or plan ahead … he or she can behave in a way which … does not appear to be in the best interest of the child ...

... There are many, many emotional stresses upon children. There are positive gains for children of MS and all the research shows that it isn’t necessarily a bad experience at all in the long term. Just as many, if not more, children are coming out of this experience having benefited from it in a strange way than there are actually who have been hurt by it in some way.” MS and Children (2008) from the Multiple Sclerosis International Foundation

related - butterfly effect MS caregiving 

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