Caregivingly Yours, MS Spouse Caregiver

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

Tags: caregiving, carer, spouse caregiver, disability, Medicare, Harry Truman

Thursday, September 18, 2008

caregiving: www.medicare.gov/caregivers/

“Who are you nattering nabobs talking to?” Spiro A. from Maryland … is the question that should have scrolled across the Medicare launch web cast today for http://www.medicare.gov/caregivers/

Anyone gets a point for effort so auto point for US Government. Where have you been, may or may not be a fair question. Caregiving is not new. However this is a step in the right direction.

The one thing the web cast did repeatedly return to and I 100% endorse is the need for information for caregivers. I would encourage caregivers and future caregivers to check out this new Medicare Caregiver site on your own without the talking heads.

As a spouse caregiver of 19 years I found the web cast remarks, mini-speeches, and “filtered” questions and answers to be condescending, and patronizing.

What do “knowing” smiles and words have to do with an exchange about what can you do to get a caregiver to accept help? How about half the people sitting there talking try rolling up your sleeves and go help someone? I would bet there are countless people and caregivers needing help within blocks of the web cast.

When acting Medicare Director Kerry Weems spin doctored his answer to the question “Can Medicare help with homecare”? I turned the web cast off. ANY caregiver knows the real answer is NO. Spin doctored it becomes “Yes, in some situations such as prescribed physical therapy … the therapy must be performed by an approved therapist” yada yada … Or, as a disabled American lies on their bathroom floor from an unattended fall smeared in their own feces or urine because Medicare will not help with attended care, Kerry Weems, Acting Administrator of CMS will authorize payment for a Medicare approved physical therapist to futilely ring the door bell.

There is no magic bullet for caregiving rather it is about your true grit. We all know the frustrations with our federal government when it comes to helping anyone, yet the one thing they do well is collect information. “Ask Medicare / Caregivers” is a long overdue and welcomed jumping off point for anyone’s journey into caregiving.

Caregivingly Yours, J Patrick Leer

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

Tags: caregiving, carer, spouse caregiver, Medicare, www.medicare.gov/caregivers/, Ask Medicare,

caregiving: wild, wonderful and down yonder

“Wild, wonderful” seems to capture both Patti and Wednesday’s birthday outing to Charles Town Races & Slots.

After 53 years of life with over 40% of them disabled with ever progressing Multiple Sclerosis, Patti still laughs and lives life.

Requesting to go to Charles Town, Patti interestingly remembered how it is infinitely more wheel chair friendly than Pennsylvania’s newer accessibility ‘in name only’ casinos. And with Pennsylvania’s recent fascist smoking regulations, heading to ‘freedom of choice’ West Virginia was where she wanted to go.

Being legally blind and with short term memory loss Patti enjoys machines that are large in display and rarely stays long at any given machine. More games interact with you vocally which amuses her to no end.

No one can win in a casino but you can control your losses. After almost 3 hrs of playing we spent just under $15, or about the price of movie theatre admission for two.

We gave the SunDance Grill a chance for dinner. Casino dinning is one of the few “steals” left in the world, with quality high and prices low.

Driving home when I stopped for gas I confirmed that I was heading in the correct direction to the Interstate. The clerk pointed down the road I was traveling and said, “just keep driving that way and it will be down yonder.”

Back in the van I began musing out loud about “yonder”. Is yonder always down? How do you know when you have reached yonder? Or left yonder? … As we approached ‘yonder’, Patti interrupted my musings by making the sounds to the introduction to the Twilight Zone. We both started laughing and laughing and could not stop until we safely left yonder.

Caregivingly Yours, J Patrick Leer

website: www.CaregivinglyYours.com

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

Tags: caregiving, carer, spouse caregiver, Multiple Sclerosis, Charles Town Races and Slots, West Virginia, Pennsylvania

Friday, September 12, 2008

ASK MEDICARE - CMS Caregiver Initiative

As a spouse caregiver of nearly 19 years, the CMS Centers for Medicare and Medicaid logo can trigger a conditioned response of frustration, endlessly being on hold, and bureaucratic indifference to say the least.

“Change” seems to be the buzzword of 2008, could CMS Centers of Medicare and Medicaid be catching the fever with “Ask Medicare, a new caregiver initiative”.

Hi Patrick,

I am working with CMS, the Centers for Medicare & Medicaid Services, to promote a new caregiver initiative being launched around Medicare. I found your website while doing research and I thought you and readers of your site might be interested in learning more.

On behalf of CMS, I would like to invite you to a live Webcast unveiling Ask Medicare, a new caregivers initiative, that will be held at 12:00 PM ET on Thursday, September 18, 2008.

Ask Medicare was developed in consultation with caregivers and partners to provide answers to common problems and address a wide range of questions about caregiver. We are reaching out to you so that you can provide valuable feedback, interact with leaders in this initiative and ultimately feel confident sharing this resource with others.

During the Webcast, caregivers and those interested, will have the opportunity to view the new Ask Medicare Web page, submit questions related to Medicare's new caregivers initiative and questions relating to care giving. A panel of experts, including Kerry Weems, Acting Administrator of CMS, will be introducing the new Ask Medicare initiative, the Web page and answering questions often asked regarding the resources available for caregivers, those questions submitted online may alsobe included in these discussions.

Currently, you can visit http://www.medicare.gov/caregivers/caregiver_signup.asp

to register for the Webcast and sign up for the Medicare e-newsletter. With the launch of the initiative, you will be able to access the Ask Medicare Web page through this url as well.

Please contact me with any questions leading up to the launch or if you would like to be more involved.

Thank you!

Sarah Marchetti

Digital Influence Strategist, Ogilvy Public Relations Worldwide

Email: Sarah.Marchetti@ogilvypr.com

Caregivingly Yours, J Patrick Leer

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

Tags: caregiving, carer, caregiver, Ask Medicare, CMS Centers for Medicare and Medicaid, Medicare, Kerry Weems, Sarah Marchetti, Ogilvy Public Relations, Caregivingly Yours

Thursday, September 11, 2008

imagine going forward without knowing where you have just been

Multiple Sclerosis symptoms of short term memory loss keep Patti in permanent “now” or snippets of ago.

I asked Patti if she knew what today, September 11th was all about. (She had just been watching a special on TV about the terrorist attacks of 9/11/2001.)

After considering the question she responded, “It’s exactly a week before my birthday!” (Yes, this is also a correct answer but not exactly what I was looking for. <grin>)

Asking her more directly if she remembered the day of the world trade center attacks, etc … she responded with a string of expletives about those mother f#ckers and where they should rot.

Whew! I woke up a hornet's nest there.

Next in conversation I asked her what she had done today. “Nothing!” she replied.

After our outing to the library and Brusters for milk shakes, I noticed on the wall calendar that her friend Sharon L had visited with her earlier bringing her a new top for an early birthday present, a McDonald’s lunch, and painted her nails for her. … Certainly a lot more than “nothing.” <grin>

With such short term memory loss, the oversized wall calendar in her room is critical for all of “us” to know what "we" are doing and Patti cannot remember.

Most of us take memory for granted. Can you even imagine going forward without knowing where you have just been?

Caregivingly Yours, J Patrick Leer

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

Tags: caregiving, carer, spouse caregiver, Multiple Sclerosis, care facility, short term memory loss, September 11th

sometimes memory loss is not acceptable …

September 11, 2001

World Trade Center, New York, NY

Pentagon, Washington, DC

Flight 93, Shanksville, PA

Deaths 2,998 (excluding the 19 hijackers), injured 6,291+

NEVER FORGET!

Caregivingly Yours, J Patrick Leer

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

Tags: 9-11, September 11, World Trade Center, Pentagon, Flight 93

Friday, September 05, 2008

caregiving: a clock of fruit and vegetables

Multiple Sclerosis symptoms relentlessly progress with an invisible tick tick tick. Repeatedly glancing at a watch, time never seems to do what we will yet glance away and who is not amazed at where time went.

From a caregiver’s perspective the functions of day to day life tell the tale of progression more vividly and of course poignantly than any test.

Before our daughter Megan was even a dream, Patti and I have grilled sweet corn. Grills have come and gone first charcoal then later propane. Megan played with her first ear in a high chair. Through it all Patti could always hold an ear of corn.

Grilling ears of sweet corn Tuesday evening to accompany crab cakes Megan and I exchanged glances of surprise as Patti dropped her ear trying to get it to her mouth. Then knowing glances as she repeated the drops, Multiple Sclerosis progression has finally robbed her of control of the brain and muscle functions necessary to enjoy an ear of sweet corn.

Earlier this summer, eating a fresh peach suffered the same fate. Patti could no longer hold one and take a bite without fumbling.

Fortunately adaptation was possible. I can slice up a peach into wedges which she handles easily. We even added peach yogurt for dipping creating something tastier and 'fun'. Patti's inability to hold a peach is not even a factor in this 'new way' of eating a peach.

No one can stop the ticking of the progression clock. Caregiver clocks must match that tick tock with creativity and adaptation.

Caregivingly Yours, J Patrick Leer