should I stay or should I go? MS spouse caregiver

“As long as I've known you, I've never heard the whole story before. Makes me love you even more, my dear friend.”  I could only smile reading this Facebook comment to my latest blog for MultipleSclerosis.net

SHOULD I STAY OR SHOULD I GO

Posted by Patrick Leer—March 16th, 2013

http://multiplesclerosis.net/blog/should-i-stay-or-should-i-go/

The commenter is one and the same as the famous other MS caregiver spouse who dropped out of cyberspace almost 20 years ago in response to my first post to a Prodigy Network MS Bulletin Board. … Those pre-dawn of the user- friendly Internet could get beyond challenging. Yet out of that primal Internet we discovered we were not alone.

Along the way somewhere somehow I decided 350 words was the average speed a caregiver reads in a minute. Caregivers searching for information IMHO simply do not have the time to weigh through ‘War and Peace’ to get to what they are looking for.

Caping my entry word counts at 350, I was pioneering the twitter concept of short messages before anyone even dreamed of a tweet.

Submitting blogs for MultipleSclerosis.net goes in a different direction, encouraging me to write a higher word count. This in turn allows creativity and fuller stories.

While probably I have told bits and pieces of our history when germane to an entry but I guess I may never have told the whole story here in CY. Thank you MultipleSclerosis.net for the opportunity to share "the rest of the story."

Patrick Leer

Health Activist:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

care facility multiple sclerosis caregiving

warts and all picture of living with Multiple Sclerosis

This morning I got one of those emails about “I am pleased to inform you that Caregivingly Yours, has been recognised for excellence …”

Anyway this is less about patting myself on the back or anything but more about George Bernard Shaw’s quote, “England and America are two countries separated by a common language.”

The spelling of ‘recognised’ which I have to fight with Microsoft Word spell check to keep was the giveaway, however  opening the email was an absolute treasure as there was a British description of my blog. 

“A personal journal following the experiences of the spouse of an MS sufferer and their move from home-care to a care-facility. The blog is updated regularly and the author prides himself on presenting a ‘warts and all’ picture of living with MS.”

While “MS sufferer” is an uncommon use in America, it is ‘spot on’ for many. However, I absolutely love the description of me priding myself on presenting a “warts and all” picture of living with MS.  

I liked it so much I added it to my blog header. J God Save the Queen!

Patrick Leer

BLOGS:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

Technorati Tags: multiple sclerosis, caregiver

RX laughter / MSFocus magazine

No doubt that laughter is medicine and Multiple Sclerosis Foundation’s MSFocus Magazine, Spring 2011 is all about laughter and living with MS.

It’s also kind of cool to find Patti and myself on pages 50-51, “Mooned By Snails”.

“…If you ask us whether it was easier to laugh together before MS, we both will smile and evoke the memory loss defense. MS brought new dimensions; our sense of humor evolved. As a caregiver, I discovered the reward of a slapstick laugh the first time I ran over my own foot with a wheelchair. Patti’s MS-induced pseudobulbar affect flips emotional tables – she laughs at funerals. …

… Oh, we are never boring to be around. Humor as intervention can disarm anxious strangers, friends, and family.

‘Common sense and a sense of humor are the same thing, moving at different speeds. A sense of humor is just common sense, dancing.’ ...

A giggle can change a mood; a guffaw is as good as any medicine. You cannot do much about multiple sclerosis, but you can do a lot about living with multiple sclerosis. Some situations are just funny, and sometimes as a caregiver it takes a little clowning around to get the laughter going …

… EDSS>8 and ADL<1 may be quantitative measurements of Patti’s MS, but I would like to think that laughter is a better measurement of quality of life. And, well, sometimes it takes a little help from those darn snails.”

To view on line edition click MSFocus Spring 2011 also available in pdf format 

While the blogosphere has always been home for Caregivingly Yours, it was both challenging and fun to rewrite an entry as a magazine article. Special thanks to Multiple Sclerosis Foundation (MSF) for believing our story of living with MS was worth including. 

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

transfer, cluster headache, MS, et al

I believe I know why I write, but I was surprised at what people read the most according to Google over the last 12 months.

              

Caregivingly Yours Top 10

one-person transfer technique, the hug  (March 2010) … there was nothing explaining simply and briefly how to transfer someone by yourself. Associated You Tube video, wheelchair transferring Multiple Sclerosis caregiver, has been viewed almost 12,000 times. 

cluster headache: brain writhing on a corkscrew (May 2009) … originally posted two years ago this entry and associated cluster headache entries are read so regularly I created their own page on my web site cluster headaches 

a caregiver reflects on the R-Word (March 2009) … written two years ago as a commentary on spending of resources it’s seemingly grown cyber-legs.

hope, liberation, and CCSVI (July 2010) … any and all things CCSVI and MS are worth talking about

monster truck wheelchair shopping cart (August 2009) … adventures with inanimate objects seem to hold their popularity J

respite care: teen autism & special needs (August 2009) … daily search results landing on this entry 18 months later have again spawned its own page on CY web site, living with teen autism 

fondue with Uhthoff's Phenomenon / Multiple Sclerosis (April 2010) … I suspect both the nomenclature and story telling make this entry interesting for those searching for affect of heat on MS

Multiple Sclerosis parenting nature vs nurture (May 2010) … no matter how trying the present, the future always trumps. 

teen autism: diagnosis, a hitchhiker's guide (January 2010) … a simplified thumbnail has continuing appeal

midget albino cannibals vs pilgrims and Indians (November 2007) … written over 4 years ago, obviously the Internet is a strange and wonderful place. What kind of a search leads to this?

Caregivingly Yours began as and remains simply our story of trial and error learned lessons. When ‘sharing with’ meets ‘searching for’ in cyberspace - it can get interesting. 


Caregivingly Yours, Patrick Leer 
web site: caregivinglyyours.com 
videos: www.youtube.com/daddyleer 

Caregiving Counseling

Sharing our story and its trial and error learned lessons never ceases to amaze me, “Oh! The places you’ll go!” … like a list of top 50 counseling blogs.

From The Counseling Courier

The Internet provides a great venue for counselors … You can pursue counseling in school systems, in personal growth or relationships, in substance abuse or other addictions and in rehabilitation or eldercare and grief. The following list of top 50 counseling blogs takes a look at blogs in each of those categories. [click to continue…]

Below are their designated top “Caregiving Counseling” blogs:

About Senior Living: Sharon O’Brien, MA, LPC, is a licensed professional counselor with a private practice in Portland, Oregon. She helps people cope with changes that come with age in this blog.

Caregiving 101 Blog: caring for the elderly in their home, they taught in–services for doctors, nurses, the staffs of hospices and home health agencies, sharing tips and unique ideas for caring for people with dementia.

Caregiving: The Sandwich Generation: Learn from this writer’s experience what it’s like to provide caregiving to a person through Alzheimer’s, Parkinson’s and coronary diseases.

Caregivingly Yours: Sharing the trial and error learned lessons of a spouse caregiver dealing with Multiple Sclerosis and with teen autism.

David Fireman’s Blog: Part of Legacy Connect, a network for grief support groups, expert advice on grieving, mourning and bereavement, this blog looks at those topics in detail.

Eldercare ABC Blog: Eldercare ABC began as an idea based on empathy and community. This blog taps into the extended social network idea for support.

Family CareGiver Blog: This blog is written by caregivers, for caregivers, offering fresh content, news and helpful studies to its readers.

Hospice and Caregiving Blog: You’ll find stories and articles about the end-of-life experience at this blog.

The Caregiver Blog…your C.A.R.E.S. Share your thoughts or questions related to caregiving for the disabled and chronically ill at this Community Advocacy for Resource, Education, and Support blog.

The Caregiving Zone: to provide holistic education as well as one-on-one consulting for individuals who are facing their own or another's serious or potentially terminal illness. 

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/ 

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

Multiple Sclerosis Center of Excellence

Our story is honored to be of help to those who deserve our gratitude.

From Multiple Sclerosis Center of Excellence United States Department of Veterans Affairs:

“Understanding the Internet: MS and the Web / Web Sites for Caregivers
… There are websites that are devoted to caregiving issues. Some of these include Caregiver.com, Family Caregiver Alliance, and National Family Caregiver Association. There are a few Blogs that also address this population and they are Caregivingly Yours and MS Caregivers.”

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

NEEDED: caring communities

Living with Multiple Sclerosis and MS caregiving can get overwhelming.

In my last entry (What if I’m not the legal caretaker?) one family’s story went tragically wrong.

Richie a MS caregiver blogging from the Netherlands, “A Place To Scream” commented

“sadly I can see how an individual gets overwhelmed … it is a hard life as a care giver and is more than one sad boy could manage- we need caring communities not over burdened individuals.”

Richie, you must have some powerful international mojo because yesterday I received a call from National Multiple Sclerosis Society - Central Pennsylvania Chapter about arranging a day of caring for Patti. Volunteers come to the home for a day of yard work, chores, etc.

“What a difference a day makes” program was debuted a month ago assisting Jay Megonnell in living with MS. United Way of the Capital Region-“Day Of Caring”

With Patti’s MS progression requiring residence in 24/7 assisted care this program is not for us. Yet it could be a godsend for so many living with MS and their caregivers.

If reading this through Patriot News bloglink or living in Central Pennsylvania Chapter area, call 1-800-227-2108, ask for Susan for information.

Pondering ‘caring communities’ and tinkering with Google Analytics I was stunned at the past month's readership of Caregivingly Yours.

Wow, I can still remember trying to create my first entry and wondering if anyone would even read or care.

I believe there are more caring people out there than it may seem.

'How to help' can be more of an obstacle than 'why'.

Related previous entries:

What can friends do to help someone who is a caregiver? (Pt 1)

What can friends do to help someone who is a caregiver? (Pt 2)

What can friends do to help someone who is a caregiver? (Pt 3) 

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer 

musings: Patrick Ponders ... 

MS Awareness "put it out there"

“forgive me for not capitalizing as i have ms and limited use of my left arm.
i wanted to thank you very much for "putting it out there."

How do people with Multiple Sclerosis share in this 21st Century?

In our story, Patti cannot journal herself because of MS visual and cognitive impairment, lack of use of her left arm, and unpredictable control of her right.

Do MS stories make some Dickensonian passage from MS past, MS present, and MS yet to come?

Yes, no, and maybe. Multiple Sclerosis symptoms and progression tend to be unique as well as are the support and resources available to each person.

More progressive MS and advanced MS symptoms unquestionably require more effort to communicate. Yet, sharing YOUR story may help another to discover that they are not alone. Otherwise cyberspace, by default, becomes a phantom’s mask revealing only part of the face of MS.

“not only am i living with ms but my husband also has the disease. … (your website) helped me look at this disease from both perspectives.”

I am always humbled by the reach of Caregivingly Yours. From my original entry: “Why share? … most people will have to walk this path eventually. Why buy some book, feel free to peek in. … This new world of journals or blogs or whatever seems worth a try.” “Caregivingly Yours” April 27, 2004

Journals/blogs read in reverse chronological order and eventually demand necessitated a website. If someone had just found our story, it was challenging to ‘cut to the chase’ through years of entries. A website gives you and the reader more control, of course it costs you money whereas journaling is free.

Network Solutions® offers a reasonable priced do it yourself web site package including domain name and web site building tool “for dummies”.

If considering sharing I recommend trying a journal/blog first simply because it is a free way to test the waters of cyberspace. Google’s Blogger I have found easy to work with.

Most important of all, just say it. Just “put it out there”.

Discovering you are not alone is a beacon anytime, any where.

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...

Multiple Sclerosis & family: wheelchair rollin' 2008

As a caregiver I have never found myself even trying to make a list of New Year’s resolutions. While you certainly must prepare and can ‘try’ to anticipate, the disease progression of the person you care for drives the agenda.

2009 finds me beginning my 19th year as a spouse caregiver, and Patti her 24th year since diagnosed with Multiple Sclerosis.

Captured below in 1 minute and 36 seconds is a look back at 2008 accompanied by "Old Man River".

Multiple Sclerosis & family: wheelchair rollin' 2008

Uploading this I was humbled to discover that Caregivingly Yours videos have been watched nearly 60,000 times since October 2006 when the original Multiple Sclerosis & family: wheelchair rollin’ debuted.

You Tube “insight” feature informs me that our original rollin’ video while most popular in the US, China ranks second, with Sweden and Germany tied for third in views.

Thank you ALL for caring! We will do our best to keep our story of living with Multiple Sclerosis and family, rollin’ on for 2009!

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...

National Family Caregiver's Month ... a roar of frustration

An essential truth of National Family Caregiver’s Month is that a twist of fate is all that separates a non-caregiver from a caregiver.

Sometimes a comment to Caregivingly Yours roars with such frustration and passion that it demands its own entry.

fantaz009 has left a new comment on your post "caregiving: wwwmedicaregov/caregivers/":

excerpts …

“… a few years ago my wife (45) suffered a car accident … Surgery was necessary… and then another surgery … which left her totally disabled … extensive physical
therapy and years of retraining to walk and recovery are in store …”

…my wife a Dental Assistant for 12 years has been handed down without retirement and I owning my own business at the time … was forced to sell and take plenty less than it's net worth, to not only provide for
raising my two teen aged daughters yet total around the clock attention to my wife.

… Each of us have made major sacrifices in our lives … fnding ourselves and our daughters at one time totally broke and homeless, losing our house for lack of payment, kicked to the streets like dogs …

… The disability check my wife now receives, is less than $700 a month. We have verily lived on only that now for 5 years.

… any compensation, for my time in caregiving for my wife? … never offered anymore than food assistance.

We can't even afford a car. So are dependent on our daughter for transportation …

… in my trade. I've tried to re- enter but at my age, I'm stopped at the door with looks …

I provide all the care but we get no giving. I feel that even now I'm wasting my time writing this, because I have very little faith in a bureaucracy that never gives answers, only questions my validity while suppressing the problem..."

All reposting to my comment, can be sent to my email address fantaz009@hotmail.com thank you for your time, comments, and concerns. Stacy Bowen

Caregivingly Yours, Patrick Leer
website: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...

Caregivingly Yours (AOL version) "we've moved"

                        
http://caregivinglyyours.blogspot.com/