Defeating Isolation for&nbsp;

United Stroke Alliance in partnership with Medtronic launched a new resource for Stroke Support Groups called The Booster Box. Included in the box is everything a leader needs to conduct a support group meeting for up to 24 attendees.

To receive your free Booster Box please call our office at
309-688-5450 or email info@strokecamp.org to request yours.

Subscriptions will be available for purchase and information will be inside your free box.

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Does it seem like I post a lot of articles about caregivers when I should post more about stroke survivors? Maybe I do. At least I don't think so. I think caregivers do not normally get the recognition that they deserve. The focus is usually on the survivor, and rightly so. Bless their hearts. Survivors lives are so radically changed and so misunderstood in their actions. Their lives are so disrupted, made so much more difficult.

In danger of downplaying the difficulties of the survivor, I want to focus more this week on the difficulties of the caregiver. After all, they are really the unsung heros of a nasty, life changing, too frequent occurring disability called stroke.

The following post is a re-post from August 2014 by Deb Theriault. She is a member of the now discontinued Strokenet newsletter staff.

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Unsung Heroes

by Deb Theriault

Back in the 1990’s, I had to do many everyday things for my father, who had developed Parkinson’s disease. I handled all of his paperwork and financial affairs, made sure he went to the doctors and took his medications, was with him whenever he was hospitalized and, ultimately, had to find him a suitable assisted living facility. Once he was there, I then had to communicate with the facility people to make sure that his needs were met.

However, I didn’t consider myself a “real” caregiver since I didn’t have to handle my father’s more physically intimate needs. I remember attending a local Parkinson’s support group with an acquaintance whose father also had Parkinson’s. Unlike my friend, I didn’t have to prepare food for my father or feed him, help him with bathing or assist him with his toileting functions, so when the support group had a “caregiver’s recognition day,” I felt like a fraud when I received one of the white carnations that were handed out to the caregivers in attendance. I knew I was devoting a lot of time and energy looking after my father’s many needs, but I didn’t feel like I was in the same “caregiving league” as my friend.

Likewise, over the years I’ve received a lot of correspondence from spouses, partners and family members of stroke survivors who feel the same way. Many people who are in the survivor’s orbit often say things like:

“I’m not their actual caregiver, but I help them out a lot by reminding them to take their pills, going with them to the doctors, and doing errands and household chores that they can’t do anymore.”

OR

“I don’t have to give them baths, get them dressed or brush their teeth, but I’ve taken over buying food and meal preparation, because their attention span is off just enough that I fear for their safety going out alone, or when working around a hot stove.”

OR

“I now do all the finances, bill paying and other administrative chores, as well as keep track of all their appointments and medications, because he/she doesn’t have the concentration or focus that they used to.”

Some people may argue that the above duties actually do describe those of a caregiver. But others would point out that while these activities are a part of the stroke survivor’s total world, they don’t include hands-on activities such as personal hygiene, toileting, and feeding. If they don’t perform these types of duties, many spouses, partners, family members and friends of stroke survivors feel that they’re not “real” caregivers.

But, if these thoughtful, giving people aren’t caregivers, then what are they? Maybe it’s time to think of these individuals in a different light, and to “re-brand” their role as that of a “care partner,” someone who is deeply invested in the well-being of the stroke survivor, but who performs the less physically intimate tasks that keep the survivor’s life in order and enable them to live more normally.

This re-branding won’t be embraced by everyone, but a care partner designation helps to clarify the care partner’s role. It acknowledges that care partners direct and coordinate many aspects of their loved one’s day-to-day activities and care, even if it doesn’t involve feeding, bathing and similar functions. This designation also recognizes that care partnering is just as important as traditional caregiving, and that care partners are just as essential as caregivers, even if their associated tasks are sometimes different.

It should be noted that the caregiver and care partner roles often overlap and aren’t necessarily “static.” They can swing back and forth, as the stroke survivor makes progress but then experiences setbacks. However, as the stroke survivor once again becomes more adept and independent, his/her caregiver can transition back into the role of care partner in the survivor’s life.

Care partnering can also take place at a distance, as in the case of adult children who coordinate the care of parents who live across the country from them. It’s not truly accurate to describe these individuals as caregivers (since they’re not in close physical proximity to the people they’re caring for), but it’s easy to think of them as care partners since they’re still intensely involved in coordinating, and making decisions about, their parents’ daily care.

Most people learn how to be care partners “on the job,” but there’s a lot of information on the internet that can help care partners, and caregivers, to do their jobs better. Much of this info can be found on disease-specific websites, which provide advice to caregivers of people who have those associated illnesses or problems. For example, the Stroke Network has a wonderful caregiver’s forum for people who take care of stroke survivors.

But, there’s at least one resource out there that isn’t associated with any one illness or condition. The “Care Partners Resource” has a good website that addresses both caregiving and care partnering. They can be found at: http://carepartnersresource.com/

Additional resources can be found by “Googling” words and phrases such as “care partner”, “care partnering”, “caregiving”, and like terms.
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The Stroke Network, Inc.

P.O. Box 492 Abingdon, Maryland 21009

Sunday, December 23, 2018

MERRY CHRISTMAS EVERYONE

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MERRY CHRISTMAS EVERYONE

December 25th we celebrate the birth of Christ

It is a day of peace

and

goodwill

It's also the day we look for gifts that

St. Nicholas (aka Santa Claus)

has left under our Christmas tree

and

Mom and Dad

and

Daughters and Sons

and

Granddaughters and Grandsons

and

Sisters and Brothers

and

Grandmas and Grandpas

and

Aunts and Uncles

and

Nieces and Nephews

and

Sometimes People We Don't Even Know

Leave Presents There Too

But the Best Present of All is Christ Himself.

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‘Twas the night before Christmas, when all through the house

Not a creature was stirring, not even a mouse;

The stockings were hung by the chimney with care,

In hopes that St. Nicholas soon would be there;

The children were nestled all snug in their beds,

While visions of sugar-plums danced in their heads;

And mamma in her ‘kerchief, and I in my cap,

Had just settled down for a long winter’s nap,

When out on the lawn there arose such a clatter,

I sprang from the bed to see what was the matter.

Away to the window I flew like a flash,

Tore open the shutters and threw up the sash.

The moon on the breast of the new-fallen snow

Gave the lustre of mid-day to objects below,

When, what to my wondering eyes should appear,

But a miniature sleigh, and eight tiny reindeer,

With a little old driver, so lively and quick,

I knew in a moment it must be St. Nick.

More rapid than eagles his coursers they came,

And he whistled, and shouted, and called them by name;

“Now, Dasher! now, Dancer! now, Prancer and Vixen!

On, Comet! on Cupid! on, Donder and Blitzen!

To the top of the porch! to the top of the wall!

Now dash away! dash away! dash away all!”

As dry leaves that before the wild hurricane fly,

When they meet with an obstacle, mount to the sky,

So up to the house-top the coursers they flew,

With the sleigh full of toys, and St. Nicholas too.

And then, in a twinkling, I heard on the roof

The prancing and pawing of each little hoof.

As I drew in my hand, and was turning around,

Down the chimney St. Nicholas came with a bound.

He was dressed all in fur, from his head to his foot,

And his clothes were all tarnished with ashes and soot;

A bundle of toys he had flung on his back,

And he looked like a peddler just opening his pack.

His eyes—how they twinkled! his dimples how merry!

His cheeks were like roses, his nose like a cherry!

His droll little mouth was drawn up like a bow,

And the beard of his chin was as white as the snow;

The stump of a pipe he held tight in his teeth,

And the smoke it encircled his head like a wreath;

He had a broad face and a little round belly,

That shook, when he laughed like a bowlful of jelly.

He was chubby and plump, a right jolly old elf,

And I laughed when I saw him, in spite of myself;

A wink of his eye and a twist of his head,

Soon gave me to know I had nothing to dread;

He spoke not a word, but went straight to his work,

And filled all the stockings; then turned with a jerk,

And laying his finger aside of his nose,

And giving a nod, up the chimney he rose;

He sprang to his sleigh, to his team gave a whistle,

And away they all flew like the down of a thistle.

But I heard him exclaim, ere he drove out of sight,

“Happy Christmas to all, and to all a good-night.”

Sunday, December 16, 2018

True Wealth Is Found in One’s Friends

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Pastor Phil Bell is a stroke survivor and one of our stroke camp friends from Macomb, Illinois. Occasionally, he writes articles for their local newspaper. This is one of them, and he has permitted us to post it on our blog.
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Street & Steeple for December 7, 2018

“True Wealth Is Found in One’s Friends”
By Phil Bell, retired pastor University Baptist Church

Annually, Forbes Magazine publishes lists of the world’s most wealthy people. They measure wealth, as do most of us, by money and possessions. There are, however, other ways to measure riches, among them, knowledge and education. I would propose that true wealth is measured by one’s friends! On my refrigerator is a magnet reading, “Friends are God’s way of taking care of us.” I couldn’t agree more!

Following my massive stroke, when my wife, Nancy, brought me home from Heartland Healthcare, a few of my church friends who are also brothers and sisters in Christ, came to our house to assist her in transferring me from my wheelchair to our stairs lift chair, back into the wheelchair, and then into bed. In fact, one of them came every Sunday morning to help her so I could attend church and continued to do so until she felt confident to do it herself! Nearly all of the church folk brought us dinner every day until we had to, literally, tell them to stop. Without these friends my transition home would have been significantly more difficult, if not impossible!

Throughout my life I have been blessed to have eight best friends, including my wife, both when we were dating and after our marriage. I honestly believe her attending me so well as my sole caregiver is due as much as or more to her being my best friend as to her being my wife. My two best friends now after my wife are both pastors: my own, Rich Barnett of University Baptist and Mike Burdick of Immanuel Lutheran.

The first Aprils Fools Day following my stroke I called Mike to say, “Mike, now that I have half a brain I’m ready to convert to be a Lutheran. Not even waiting for me to say April Fool, he said, “Phil, we don’t want you!” That is, I believe, how friends speak to one another, honestly with fun out of mutual respect and trust! Nancy and I are fortunate to have good neighbors and friends on either side of us.

Also, across the street, live a family of Cardinals fans and friends, if you can believe that! Nancy, when she brought me home, arranged with them that she could call upon them to help, if needed. They, graciously told her especially to call in cases of emergency. Sure enough, soon, I ended up on the floor. She called them. When they came, Nancy looked down at me to say, “You’re never going to live this down.” As most of you know, I am one of Macomb’s most die-hard and obnoxious Cubs fan! I looked up to see three Cardinals shirted persons here to rescue me! They did, and since, many times Tom has been invaluable help to Nancy in many ways!

In 2016 when the Cubs won it all. Tom came to me saying, “Phil, you know your Cubs flag hanging in front of your house is getting a little the worse for wear. I will buy you a new one should the Cubs win the World Series.” Of course, they did and he did! He came up with it so quickly I wondered if he really had to buy it or already had it, being a closet Cubs fan! Either way, that is the height of friendship, a Cardinals fan giving a Cubs flag to a Cubs fan. He is paying the price for his magnanimous gesture, having to look at it every day!

The Bible has plenty to say about friends. In Proverbs we are told that there is a friend who is closer than a brother, that a friend’s counsel is sweet, and we are not to forsake our own friend or the friend of our father. I trust I’ve convinced you that true wealth is measured by our friends!

Your job is to appreciate your friends by telling them so and increase others’ riches by being a friend yourself!

Sunday, December 9, 2018

Defeating Isolation

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The following post is about a support group in Southern California. I'm reposting it here because I believe isolation to be a major factor after a stroke. Many time I've heard at camp of survivors not seeing friends anymore or relatives not coming to visit as much anymore. Support groups are a very good way to address these isolation feelings. It can be a good way to make new friends, socialize, educate and encourage rehab. Use this Stroke Support Group Finder Link to help you find a support group in your area. You merely enter your zip code and give a radius in miles you're willing to drive to attend.

Peoria, Illinois has a support group. Here is their web address:

Peoria Area Stroke Group

The following article is from the Stroke Connection website:

http://strokeconnection.strokeassociation.org/

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Defeating Isolation for

Over 40 Years

BY JON CASWELL

Our Support Showcase department highlights the good work being done by stroke support groups from around the nation. If you are part of a successful support group we should consider featuring, let us know!

Glendora Program Director Sonia Schupbach

In the 1970s, Dr. Herbert Johnson of Casa Colina Rehabilitation Center in southern California knew that stroke could be incredibly isolating for both survivors and their families. He believed that isolation affected a survivor’s emotional wellbeing as well as their physical recovery. In an effort to prevent social isolation and regression, Johnson teamed up with colleague Sharon Meyers to create the Glendora After Stroke Support Group in 1973. Their plan was to create a venue where both survivors and their caregivers could partake in camaraderie with others who were going through similar life experiences. The fact they did that in the last century makes theirs one of the oldest support groups we know about.

The Glendora After Stroke Center is a no-fee program that serves the greater Los Angeles area.Glendora is a town of 50,000 about 25 miles east of Los Angeles. The current director, SoniaSchupbach, has been leading the group since 2012. She has worked with seniors for over 20 years. “I love being around these people,” she said. “They have a real zest for life.”

The group meets every Wednesday at the La Fetra Senior Center, a city-owned facility. A full day of programs starts at 9:30 in concurrent break-out groups. One group, led by assistant director Pat Kelly, focuses on relearning skills such as reading, writing and speaking. Simultaneously, a caregiver support group and a current events discussion group take place. At 11 a.m., everyone re-groups for chair exercises followed by entertainment or an educational speaker. After a low-cost lunch, the survivors convene for a support group meeting.

Field trips are planned once a quarter. Recent excursions have been to visit the space shuttle Endeavour, the LaBrea tar pits, the San Juan Capistrano Mission and the Ronald Reagan Presidential Library & Museum.

In addition to these activities, a volunteer recognition banquet is held every October. “We have many, many volunteers to honor,” Schupbach said. “Even the mayor attends.” The group also celebrates Halloween with a costume contest and holds an annual Christmas party.

Being a clearinghouse of resources is another way the group supports its members. “We try to get people what they need,” Schupbach said. “For instance, when people have to take early retirement, we have a volunteer lawyer who helps them through the process at Social Security.”

Fundraising

It takes a budget to put on a no-fee program of this magnitude every week, as well as schedule speakers, entertainment and field trips. The Glendora group gets a portion of its budget (and the use of the La Fetra Senior Center) as a grant from the city. In addition, the group marks Stroke Awareness Month in May by mailing donation requests from members to family and friends. They also raise money by collecting garage sale items that they give to a local resale shop, which in turn gives the group a 30 percent commission.

Attracting Members

Although many members have been coming for years, no group can last 40 years without bringing in new members, so publicity is key. For starters, the group maintains a listing in the local weekly paper. Each May, a banner promoting Stroke Awareness Month and with the group’s contact information is hung on Glendora’s main street. There is also a banner inside the senior center that alerts visitors to the weekly meetings. Brochures are placed in local rehab centers and doctors’ offices. The group also maintains a community presence by participating in health fairs and a Halloween carnival. And after so many years, there is significant word-of-mouth publicity.

Attitude

Schupbach attributes the success and longevity of the Glendora After-Stroke Program to attitude. “Our members love to come because they get encouragement and don’t feel different,” Schupbach said. “Our goal is to love them and accept them. I give lots of hugs and get lots of hugs back.”

Love and acceptance are a good way to trump isolation. No doubt founder Johnson would approve.

This information is provided as a resource to our readers. The tips, products or resources listed have not been reviewed or endorsed by the American Stroke Association.

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United Stroke Alliance is not an affiliation of American Heart Association/American Stroke Association.
Copyright is owned or held by the American Heart Association,Inc., and all rights are reserved.

Permission is granted, at no cost and without need for further request, to link to, quote, excerpt or reprint

from these stories in any medium as long as no text is altered and proper attribution is made to

American Heart Association. See full terms of use.

Sunday, December 2, 2018

The two hours that saved me from myself

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Monica is a frequent and valuable volunteer for our stroke camps and for other brain injury organizations she is involved with. Her words are worth considering as I believe stroke survivors and even their caregivers can, and in many cases do, experience depression when their loved one suffers a stroke. Monica is also an excellent, and should be considered professional, photographer. (She makes my photos look like they came off the walls of prehistoric caves)

She posted this on Thanksgiving day and I was able to get her permission to repost it here on our RRSC blog. I believe this to be good reading even now because even though major holiday seasons like Thanksgiving, Christmas and the coming New Year celebrations should be happy times they are also prime depression times for many of us for many reasons.

If you wish to see more of Monica's thoughts and experiences I urge you to visit her blog site:

"Turning Empathy Into Action"

monicavestwheeler.blogspot.com

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The two hours that saved me from myself

By Monica Vest Wheeler

May you be blessed with discovering new ways of giving thanks on this day …

I am beyond blessed with the family and friends who never fail to lend a hand, a shoulder, a word, an ear … They put me in a place of calm, such as this moment of soaking in the power and peace of Lake Michigan last month on my way home from camp …

I now take better care of my physical self … walking at least four to five times a week, eating less and better … developing more stamina after losing more than 20 pounds … a great reversal after ending up in the ER near physical collapse two weeks after Mom passed away in July.

Yes, yes, yes, go, go, go …

Self-talk, self-talk, self-talk …

Yes, I believed that I was (re)building a new me …

Several days ago, I finally stopped to ask, “Who am I?" If I only knew. I had been writing the story for 60 years and finding fault with every previous chapter. There wasn’t enough red ink in the world to correct everything “I" considered an error. Intellectually I knew I was wrong but I couldn't course-correct emotionally … Don't worry. No cliff jumping because I'm afraid of heights …

:-)

My poor husband and son, the challenges they've faced with someone who has battled depression for soooooo many years … Talk about loving, patient souls … Yes, I wanted/needed help but was unsure what it even was. I had already increased my meds while caring for Mom or I knew I wouldn’t make it. However, I’m smart enough to know that meds alone wouldn’t “rescue” me.

I composed an email asking a professional counselor I knew for help. Then I steadied my shaking finger over the send button … and hit it. This person got me in for what turned out to be a two-hour Monica-athon. Poor person … I owe them a box of tissues to replace the one I consumed …

:-)

Finally, finally, finally … I untangled the roots of decades of self-imposed inadequacies, doubts and fears, and it made sense. In the last 17 years, I had had therapy several times because of my depression and made great progress. But this time, because of where I am in my lifeline and losing my parents in the last two years, I guess I tapped into a deeper vein of existence and purpose … oh yes …

And it was enough to cut my tissue consumption at home by 90 percent and to turn my husband’s tears of worry a few days ago to laughing, “Geez, you’re sure happy!” just yesterday …

Blessed be those who help and listen and love and hurt for us … family and friends who are kind and patient and compassionate … people who acknowledge they need help and ask for and accept it …

I need you … and you need me … what a glorious, glorious place to be …

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Wednesday, November 21, 2018

Happy Thanksgiving from Care Partners Resource

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I know this post is earlier than previous ones but I just got this wonderful email tonight from Lori Ramos Lemasters of Carepartners Resource. I want to pass it on to you before you gather with your family and/or friends tomorrow for Thanksgiving because I think it is very good advice for you survivors or caregivers. How many times have you heard: "If there is anything I can do to help, let me know." With her advice, you have a good chance of getting that help.

---------------------------------------------------------------------------------------------------Happy Thanksgiving from Care Partners Resource

Care Partners Resource lori@carepartnersresource.com

Happy Thanksgiving to you and yours,

As you prepare for your Thanksgiving celebration I wanted to send a quick email to wish you blessings and happiness.
While you may be looking forward to the time with family and friends, holidays can also be difficult when your caring for a loved one. The added responsibilities of house guests, extra cooking or even getting your loved one to a family celebration can be a challenge. However, it is worth the time and extra energy to break out of the everyday routine and enjoy family, friends and food.
This Thanksgiving holiday I encourage each of you to take this opportunity to ask for a little help. It may seem like an odd time to discuss your needs but family gatherings are a great time to explain how things have changed, how you're feeling and that you would be grateful for a little help. Before you head out to that celebration or everyone shows up at your door take a minute and write everything you do in a day. Make copies and keep it handy and be prepared the moment anyone offers any help hand it to them and ask them to pick one item on the list.
If you have a tough time asking for or accepting help please watch this quick 10 minute Caregiver Tuesday Talk Outside the Box from my YouTube page:

https://www.youtube.com/watch?v=97PxAtCN6bQ&list=PL2CDQWNsrLdkkdhe_Z1nGFQhsPdJDEoJP&index=2

I hope the tips in the video are helpful and if you need any other ideas or suggestions I'm only an email away.

Take good care and have a very happy Thanksgiving,
Lori
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Copyright © 2018 Care Partners Resource, All rights reserved.
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Our mailing address is:
Care Partners Resource
Littleton, CO 80127

Sunday, November 18, 2018

Warning Stroke, But Didn’t Seek Help

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