MS caregiver survey

Received an interesting email:

“Dear Patrick,

We, the Southeastern Institute of Research (SIR), are conducting an important research study on behalf of the National Alliance for Caregiving and the National Multiple Sclerosis Society.  The study includes a survey that investigates issues related to caring for someone with MS and the needs of family and friend caregivers. Would you be willing to post a link to this important survey on caregivinglyyours.com? …”

www.sirresearch.com/MScaregiver

For those who know me well, know I live and learn by questions. Noting a name and phone number at the bottom I called Heather Marron, Project Manager for SIR. She is indeed a real person and patiently fielded my questions.

More importantly I took the survey. It takes around 15-20 minutes though you can always save and return. It passed all scrutiny by my AVG anti-virus and anti-spyware defenses; ever the ‘doubting Thomas’ I also ran Spybot upon completion of the survey and it too found no prying eyes left behind. No name or contact information is requested, as anonymous and confidential as anything can be in this age.

Most importantly it really is an extraordinary survey. I’ve never seen anything like it and long overdue when it comes to trying to study us extremely diverse and unique MS caregivers.

“Responses will be combined with those of other caregivers and will be shared with the National Alliance of Caregiving and the MS Society so that they can learn how to better meet the needs of those caring for people with MS.”

Please note you must complete the survey by Friday, October 21^st and “for the purposes of this research study, caregivers are defined as family or friends, not professionally-paid caregivers.”

Of course if you have questions (and believe me I understand) Heather said it was fine to pass along her contact information: Heather Marron, Project Manager at SIR at hmarron@sirresearch.com or 800-358-8981 (ext 28) … or Anna MacIntosh, SVP of Research Operations at SIR at anna@sirresearch.com or (800) 807-8981 (ext. 18).

Take it and spread the word!
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  

Tax Benefits for Caregivers

With politicians making daily headlines thumping their chests over benefits and tax cuts I found it timely that ‘ASK MEDICARE: information to help you care for others’ would offer the following factual information in their September/October e-newsletter.

"If you provide care and financial support, you may be eligible for certain tax breaks or other financial help. You may want to look into:

* Multiple Support Declaration

* Deductions for qualifying relatives

* Deductions for medical expenses

* Dependent Care Credit for paid caregivers

* Payments (in some states) for caregiving work

* Public benefits available in your state  

Qualtity Care Finder (information on hospitals, nursing homes, home health agencies, and other facilities across the country)

Help in Your Community from Aging & Disability Resources Centers (ADRC) connect to the ADRC in your area with the Administration on Aging's Eldercare Locator."

With medical insurance gone wild and not every one honest when it comes to our more vulnerable population, advice is helpful.

"Medicare plans can start marketing for Open Enrollment on October 1. Protect yourself by knowing the rules about what Medicare plan sales agents can do. Sales agents CAN'T:

* Come to your home uninvited

* Approach you in parking lots, hallways or lobbies

* Offer you a gift worth more than $15 to join their plan 

* Provide meals at sales presentations

* Try to sell you a plan at educational events

If you know of an agent that's not following these marketing rules, send an email with the details of what happened to our Surveillance Mailbox at surveillance@cms.hhs.gov. "

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

respite care awareness

Respite care is a ‘gift of time’, a ‘break’, a provision of short-term, temporary relief to those who are caring for family members. It’s about addressing caregiver / carer burn-out.

Respite care ‘awareness’ is about education. Unless you have walked in carer/ caregiver shoes likely you do not have a clue how consuming and overwhelming it all can become – or more importantly what can you do.

“WHEREAS, Families are Pennsylvania's most important and constant care providers for individuals with extraordinary care needs, such as developmental disabilities, physical disabilities, Alzheimer's disease, mental and emotional disorders, and extreme medical need; and

 WHEREAS, this important job can become stressful for the individual providing care, particularly due to the often constant demands -- many times it is a 24-hour a day commitment;

 WHEREAS, citizens who provide respite care to persons with special needs are providing an important and highly valuable service to those individuals and their families, and to their communities.

 THEREFORE, In recognition of the unique and important service that respite caregivers offer to the many selfless individuals caring for Pennsylvania's most vulnerable population, I, Tom Corbett, Governor of the Commonwealth of Pennsylvania, do hereby proclaim September 25th through October 1, 2011, RESPITE CARE AWARENESS WEEK throughout the Commonwealth”

I confess that my own awareness of ‘respite care awareness week’ was only because Cumberland Perry Respite gave me a heads up a week ago. A designated awareness week seems an opportunity to promote awareness in general and more importantly services for caregivers of any specific illness/disability. However I was surprised (and not surprised) to discover after a Google search only one related event in Pennsylvania, a Respite Resource Fair in Pittsburgh sponsored by United Cerebral Palsy.

Admittedly there has been an earthquake, hurricane, tropical storm, and record flooding to dominate both lives and the news, yet the sounds of silence from the Pennsylvania chapters of major non-profit disease and/or care organizations is rather deafening. Not unlike the sound that usually follows the mention of the phrase ‘respite care’.


***updated 9/19 - Respite Care Awareness Week Proclamation from Cumberland County Commissioners

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

9/11 I was standing in line ...

10 years ago on the morning of September 11^th I was standing in line in at the Post Office waiting to buy stamps.

The last guy entering the line started talking about hearing something on the radio about a plane crashing into the World Trade Center. We in line reacted more like Robert De Niro, “You talking to Me?” and refocused our impatient glares on postal clerks.

Patti’s Multiple Sclerosis progression both physically and cognitively even 10 years ago had driven a coffin nail in home care help and I had decided to try to juggle it all; full time homecare, basically single parenting and somehow work.

Frankly from a morning of getting Patti and Megan up and dropping Megan at middle school, I was overwhelmed and it wasn’t even 9 AM. Living then in the Maryland suburbs of Washington DC my mind was in a thousand places waiting in line that morning.  

Returning home to care for Patti who was watching morning TV, I asked her about it. She was aware of no plane crash. Even then with her MS memory loss milder I still could not be sure whether she simply had forgotten or it was not news, it did after all seem incredulous.

Turning my attention to the TV – the world changed before my eyes.  A second plane hit the world Trade Center, 30 minutes later a third plane crashes into the Pentagon (less than 10 miles away as a plane flies), a forth plane crashes in Pennsylvania as passengers battle terrorists.

Get our daughter from school was my knee jerk reaction. Calling the Principal she explained all were safe and all classes were watching TV news together. Where better to process the unimaginable than with peers and teachers? If anything changed or Megan wanted to come home, she would call me. I couldn’t ask for more than that.

Somewhere in the timeline we nearly jumped out of our skins as our entire house shook from sonic booms as air force jets from nearby Andrews AFB roared into the skies over Washington DC.

Caregiving for perhaps the only day in 21 years became secondary.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

rollin' along the sidewalks

When we are out and about, strangers would not have a clue that it takes a small army to assist Patti with her activities of daily living much less get her ready and to any outing. Laughter and smiles have a way of trumping words like non-ambulatory or even Multiple Sclerosis much less MS symptoms.

So what could be more wheelchair accessible than rolling around downtown sidewalks in near perfect MS weather, cloudy and low 70’s? Carlisle’s “First Friday” gives businesses a chance to interact. Such as a Belgian draft horse on the side walk outside the Café Bruges (Belgian cusine). Yet as close as Patti is to the huge horse her visual impairment prevented her from telling or even guessing what it was.

We shared a complimentary and yummy bowl of fried rice from Amy’s Thai Cuisine before checking out a 1930 Ford and wondered how one could convert this for wheelchair access, though I suspect the 30’s was not known as an accessible era.

Discovering one of our favorites Helena’s Chocolate Café and Creperie was opened we settled into a sidewalk table for dinner, chocolate raspberry crepe for me and a peaches and crème crepe for Patti. We shared lemonade while I alternated feeding Patti bites of hers while taking bites of my own. Somehow the whole busy sidewalk scene dwarfed the issue of feeding vs assisted eating. … The crepes were so out of this world that we had to go back inside and publicly applaud the chef.

After dinner we pushed and rolled around enjoying sidewalk serenades that well you just can’t imagine – Prince’s “Kiss” performed on acoustic guitars while kids pedaled around a bank parking lot on miniature tractors – a rock and roll flute version of Young Rascals “Good Lovin” on a shady corner of Dickinson – and a young singer songwriter, Nate Lenox, giving a break out performance from the Library steps.  

The thing is you can measure how little anyone’s body is capable of doing but not what they are capable of appreciating or in turn being appreciated.

A community in motion, now that’s a great idea!!!

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com