Archive for the ‘The Faces of Homecare’ Category

Yes, You Can! How Adaptive Equipment Enables Disabled People to Live Fully

Greetings from Canada!  Homecare Advocate is coming to you from the beautiful and snowy Whistler, British Columbia.

Homecare Advocate Blog: Yes, You Can! How Adaptive Equipment Enables Disabled=

Whistler is a mountain-lover’s dream.  It was the home of the 2010 Winter Olympics and is consistently ranked as one of the top resorts in the world.   So when I came across this remarkable  video of Josh Dueck, a T-11 paraplegic skier who was attempting a back-flip in Whistler’s backcountry, I was intrigued.

Josh’s video below inspired today’s post about how you can continue doing the things you love with adaptive equipment. Josh became a full T-11 paraplegic after a skiing accident but was determined to not  give up on life and the things he loved.  “This is something I’ve been dreaming about ever since I was laid out in the hospital.  I’ve wanted to get back on the horse ever since I got knocked off,” Josh says.

Homecare Advocate Blog: Yes, You Can!How Adaptive Equipment Enables Disabled=Josh’s story reminds me of Bryan Anderson, a vivacious young man who lost both legs and left hand during his military tour in Iraq.  Bryan visited Lambert’s a few years back to speak to our patients about how adaptive equipment can still enable you to live a full, active life.  Bryan was filmed by our local news doing skateboarding tricks and talking about the sports he still enjoys doing after his injuries in Iraq.  He has since appeared on the cover of Esquire magazine and acted in TV and film for CSI: New York, All My Children, and The Wrestler starring Mickey Rourke.

Homecare Advocate Blog: Yes, You Can! How Adaptive Equipment Enables Disabled=Bryan recently released an autobiographical book on his courageous journey, “No Turning Back”, which is available here.  In it, he candidly describes the transformation as he realized that his life would never be the same & how he was determined to live fully after the accident.  His outlook on life kept him going through 13 months of rehab and is an inspiration to other young amputees and people with disabilities.  “This book, ” Anderson writes, “is not about being wounded.  It’s not about struggling.  This book is about living.  It’s about life.”

Bryan and Josh are reminders that no matter what happens to us in life, we can control our mental outlook.  Instead of cant’s, we should look at can’s and how’s.

Enter adaptive technology.

Whether it’s a power-chair to make you mobile, an accessible vehicle to see the world in, or sit-ski that enables you to get on the slopes again, the technology is out there to help you create the life you want.

Talk to your physician about how adaptive equipment can benefit you. Learn about disability rehab-camps and organizations that have specialty equipment to suit a variety of physical and/or mental impairments.   Visit your local home medical equipment company for information on products and devices that can help you achieve your goals.

Here are some places to get you started:

Enabling Technologies: manufacturer of adaptive outdoor equipment.

Quantum Rehab: manufacturer of power chairs, customizable to suit your needs.  (Bryan Anderson is the official spokesperson for Quantum.)

Disabled Sports USA: non-profit offering sports-rehab for those with disabilities, impairments, and permanent injuries.

Adaptive Skiing Organizations: disabled skiing programs throughout the country for various outdoor-sports resorts.

See you back in Tennessee!

::AWP::

“Tell me, what is it you plan to do with your one wild and precious life?” –Mary Oliver

91 Year Old Thrives After Hip Replacement Surgery

What do Billy Joel, George HW Bush, and my grandmother all have in common? They all had successful hip replacement surgeries and joined the ranks the 285,000 Americans who go under the knife for this surgery each year in the United States.

For 91 year old Mrs. W* (name changed), the decision to have hip replacement surgery came once her doctor told her that due to the bone’s deterioration and crumbling, it could break even if she were sitting in a chair. Today, two months after surgery, she sits down with Homecare Advocate to tell her story.

Homecare Advocate Blog: 91 Year Old Thrives After Hip Replacement Surgery

HA: What non-surgical approaches did you take to relieve pain and improve function prior to surgery?

Mrs. W: I’ve used a cane for years, but the pain progressed significantly over the past year or so that by the end I was hardly even able to use a walker. Though some may use pain pills to relieve pain, I’m on Coumadin [a highly-sensitive blood thinner medication] and was only able to take Tylenol. Tylenol would dull the pain but never relieved it.

HA: At 91, what were your primary concerns with having hip replacement surgery?

Mrs. W: Well my heart doctor originally told me a year or two ago that I shouldn’t have it. The surgeon was more concerned once he heard that and wouldn’t consent to surgery until I had tests run. They marked me at “high risk”, which made it hard for me to take that risk and proceed. I was also worried about the risk of stroke as I had to stop taking Coumadin before surgery.

HA: When did you know it was “time” to have the surgery?

Mrs. W: The pain increased from last Christmas until November when I made the decision to have it. Every week I could tell it was getting worse. But what finally convinced me to go ahead was when the surgeon told me my bone was crumbling and that because of that, I could be sitting in a chair and it break. Beforehand I thought I could only break it if I fell, so I did everything I could not to fall. Once I heard that it could just break on its own, I felt like I lost control over it and had to do something.

HA: Did you have to do anything special in preparation for the surgery?

Mrs. W: I had to do slight exercises and deep breathing, which I think was to help ward off pneumonia. I also had to take showers with special soaps 2 nights before, the night before, and the morning of surgery. They [the surgeons] wanted me to be as sterile as possible before surgery. Of course, the biggest change for me was having to be off Coumadin for 5 days.

HA: Why did the doctors want you to be off of Coumadin for so long?

Mrs. W: Hip replacement surgery is a bloody surgery, and they don’t want you to lose too much blood. Since Coumadin is a blood thinner, you bleed more freely if you’re cut. Even being off of Coumadin 5 days before surgery, I had to have two pints of blood.

HA: How long were you in the hospital after the surgery? Did you go home or to a rehab center during recovery?

Mrs. W: I was in the hospital four days; some aren’t there as long. Since I was recovering during the holidays, I chose to stay at a rehab facility in town and was there for 28 days. They had excellent nurses who were there any time I needed them. Once I got home, a physical therapist visited me weekly to continue my recovery.

HA: At what point post-surgery did your pain drop below your previous pain level pre-surgery?

Mrs. W: I was unaware of everything for four or five days following surgery because of the pain medication, but by the time I roused, I was not in the pain I was accustomed to. It was an amazing feeling.

HA: What types of exercises did you do in physical and occupational therapy?

Mrs. W: We did ankle rotations and knee bends, straight leg exercises, standing exercises, and balance exercises. I also did upper-body strength training with weight machines which helps me rise properly from a chair. We practiced getting in and out of a car; I learned the farther back you put the seat, the less you twist the hip. We also learned the safest way to get out in bed, which is to get in with the good leg first. They teach you all of this to help regain strength and to keep you from dislocating your new hip while it bonds to your bones. They worked us hard, two times a day, six days a week with each session lasting 1.5 hours!

Above and beyond what all doctors, nurses and therapists could do, my faith and trust in God gave me the strength each day to keep me going daily and do what is expected for recovery. Some of the other patients at rehab refused to go to therapy and never learned how to help themselves. Surgery for a 91 year old is major, so after I agreed to have it I was determined to do everything required of me to get the biggest benefit I could.

HA: Do you still do any exercises now that you’re at home?

Mrs. W: Before I had surgery, I never exercised. The pain took over to where I could hardly do anything at all. But now that I went through rehab and learned what to do, I continue my exercises and stretches at home. I do ankle exercises while watching TV, perform deep stretches while seated, and walk around my house and backyard.

HA: What have you done at home to create a safe, accessible environment?

Mrs. W: I already had a lot in place and was using it before surgery since my hip was so bad. I think that may have prepared me more for using them after surgery than those who had never had anything before. I use my reacher for everything! I have handrails on stairways and a stair lift if I need it again. In my bathroom I use a raised toilet seat, shower bench, grab bars, and long-handled sponge. I turned a plastic hanging shoe organizer into my “catch all” by my favorite seat lift chair that holds the remote control, phone, tissues, reading materials, and such so that everything is nearby.

HA: What are you looking forward to now that you’ve had a successful hip replacement?

Mrs. W: I’m most looking forward to being carefree from other people. I’m an independent person that likes to take care of myself and do things myself. I hope to do that as long as I can. I would love to drive again, but… maybe later [she chuckles and her eyes sparkle mischievously].

HA: What is the one piece of advice you’d give our Homecare Advocate readers contemplating hip replacement surgery?

Mrs. W: Have it before you get to the point where you’re suffering like I did. And remember, it’s all in a matter of adjustment, tolerance of pain, and change of activity. I’m happy to have done it all, and I truly think I succeeded!

Tune in next week as Homecare Advocate digs into the details of hip replacement surgery. We’ll cover surgery trends and advancements, risks, and benefits of what the American Academy of Orthopaedic Surgeons has called, “one of the most successful operations in all of medicine.”

::AWP::

Testimony on the Invaluable Cost of Homecare

We have a special treat for you today! Esteemed poet, teacher, and friend, Henry Walker, wrote this tribute to homecare especially for Homecare Advocate. His compelling story about his mother’s homecare experience is touching and reminds us about the quality of life that’s possible through homecare services. Enjoy!

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Home is where the heart, and the care can be

Who are the real lovers of God? Perhaps it is any who know that the Divine has no hands but theirs, no feet but theirs, no other eyes through which to look out and see what needs to be done.

Homecare Advocate Blog Henry Walker Poem About Homecare 01In heart after heart, in family after family, someone needs care and someone else steps forward to help. Such a gift of one’s self is sacred, and government can be a big help in allowing each gift to be given. Such a gift is morally right and enriching. And, when the bottom line is figured, the safety net closer to home is cheaper than the gift of hospital and nursing home.

My mother spent her life caring for others: her spouse, her children, her family, her students–anyone who needed help, a meal, a bed, a shoulder, an ear. As long as she could, she took care of herself. Like her mother, she worked all the time, for home is hard to make and bills don’t pay themselves.

As Alzheimer’s slipped into her, she forgot to take her pills and to pay her bills. For the first time, her body had trouble processing sugar and nightmares were in the room with her. One last time she walked and then she didn’t. It’s wonderful how long we can each take care of ourselves in the bathroom, and what a logistical and emotional nightmare when we can’t. What were we to do?

Mother was well-prepared with handicap-accessible quarters and a nearby room for a caregiver. She even had insurance to pay for a nursing home. When she was still “with it,” she compared nearby nursing homes and liked the one that had five meals a day. She wanted, and we wanted for her, to stay at home as long as possible.

We were incredibly lucky in finding a caregiver who already loved Mother and who found a way to stay with her, and then to find others in her family who would share the work and challenge. We were incredibly lucky to have two of her nieces, with substantial financial resources, feel the “calling” to pay for the caregivers. Mother had stored up the capital with them in how she had lived her life with them.Homecare Advocate Blog Henry Walker Poem About Homecare 01

What jumps out of all this to me is that our country often does its best for our aged and for those infirm when we can find the way for them to stay at home and get the care there. Our experience with home health care nurses was wonderful. The Hospice nurses were wonderful. The caregivers we had were wonderful. And the cost to us all was far less at home than at a hospital or a nursing home. May we find the way to have home health care even more supported and possible. People deserve the best, whether in hospital, nursing home, or at home. Let’s make it so.

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We’ll be featuring different homecare stories and perspectives all month, and we encourage you to send in your own story! Please e-mail it to advocate(at)lambertshc.com, and we may just pick yours for next week’s Faces of Homecare Feature.

Happy Homecare & Family Caregivers Month!

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Wheels for the World: Part II

Remember the story of the starfish?  The person walking along the beach, picking up each starfish and tossing it back into the sea?  It may be true that we cannot do everything, but we have an ability to make a difference, one by one.   As I wrote in an earlier post Wheels for the World, Lambert’s rehab specialist, Rusty Beal, traveled to Guatemala to help with Wheels for the World by Joni & Friends. Nearly 40 of us gathered yesterday evening in West Knoxville to hear Rusty recount this life-changing experience along with some of his traveling companions (Laura, Rhoni, & Grant from the Knoxville chapter of Joni & Friends) as well as Chris Yerger from Knoxville.
Homecare Advocate: Wheels for the World presentation in Knoxville
Rusty agreed to share his story with Homecare Advocate readers.  He writes:

Once I decided to go to Guatemala on the Wheels for the World mission trip, I was blessed with support and encouragement from my family (especially my wife), my friends, church family and co-workers. As I prepared for the unknown ahead of me, I feel that prayer was the single most helpful thing for me. I had many worries and concerns that I wasn’t sure if I could have overcome them and be able to be “worry free” while I was working in Guatemala. I prayed myself, of course, but many co-workers and friends were right there by my side praying as well as my entire church family.

I went as a wheelchair mechanic on the trip because of my ATP (Assistive Technology Professional) certification. To receive this certification, I went through in depth study course on-line (approx. 40 hours), sat for an exam that took almost two hours and each year, I must maintain the certification by continuing my education in wheelchair technology. Everyone in our group brought different skills to the mix. We had two physical therapists, an engineer, a special education teacher, a translator and several more people on the trip.

Homecare Advocate: Guatemala Wheels for the World Group Photo

Our group consisted of 10 people and we met with a group from Bethel Ministries. The group from Bethel Ministries live in Guatemala and they take care of getting the distributions set up there as well as work towards providing chairs for people in need at other times as well.

Homecare Advocate: Wheels for the World, Grateful Woman

All of the people in Guatemala that I interacted with were very grateful and happy to have us there. They received us with smiles and left us in tears, many times because they were so happy to finally have the mobility that they have never had.









The largest barriers we faced, in my opinion, was the fact that we had lots of travel time and simply being out of our normal comfort zones. Our travel time was approximately 2 1/2 hours for 3 days and 4 1/2 hours the other two days.  During our time there, we traveled a lot so that we could get to the villages where the distribution would take place. Our day started around 6:30 a.m. and ended around 3:00 p.m. or until the last person was fitted with a wheelchair and had someone to pray with them.


Trying to tell what was my favorite thing from the trip is difficult. There are so many things that I enjoyed and was blessed by. However, the one that stands out the most to me is the expression on a young boy’s face after he received his wheelchair.

Homecare Advocate: Wheels for the World, Part II boy

This young man had Spina Bifida and has little to no use of his legs.  In order to go anywhere, he had to drag himself with his arms or have his mother carry him.  As I spent two hours working on the wheelchair that we were going to give him, he watched me closely to see what I was doing. Once he received it, the expression on his face was priceless and I had a mother, with tears in her eyes, as she watched her child become more independent. I knew that I had done something for this young man that would benefit him in so many ways and that would change his life.  He now has a sporty wheelchair that he can use all over town and no longer has to rely on someone to help him get from place to place.

Homecare Advocate: Wheels for the World, Guatemalan boy and mother with Rusty

My experience in Guatemala was wonderful and I am so thankful that I was given this opportunity and for all of the support that I received.

–Rusty Beal, ATP at Lambert’s Health Care

Wow, what an incredible experience.  Last night he described the high occurrence of Cerebral Palsy in many Guatemalans and how the biggest cause of physical and developmental disabilities for many is a lack of an education.  In America, he explains, our problems occur with obstacles like the umbilical cord wrapping around the baby’s neck.  There, there are preventable educational barriers that pose risk to the children.  One long-practiced custom they believe is that when a baby gets a temperature, one can burn the sickness out of them.  To do so, the parent(s) wrap their baby tightly in layers of clothing and rags and put their baby out in the extreme heat of the Central American sun.  This exposure to long periods of severe heat cause brain damage, resulting in many children having lifelong physical and developmental disabilities.  Their group worked through Bethel Ministries International where missionaries teach Guatemalans about these types of issues and minister to them spiritually.

Homecare Advocate: Wheels for the World, Part II.  Boy and Chris

























In seeing the photos and hearing Rusty speak about this trip, it becomes painfully obvious how much we have in America and how grateful we should truly be.  Rusty described the beautiful ways that families care for one another in Guatemala, parents carrying their children everywhere because they don’t have a wheelchair, people dragging their loved ones to the wheelchair distribution site on cardboard, in old wheelbarrows, and any way one could imagine to get the medical equipment that was so desperately needed.  I am reminded of our own caregivers in the United States and the selfless hours spent caring for a parent, partner, or friend.  What an example they set for us all.

453 wheelchairs were given to Guatemalans during Rusty’s 6-day trip.  That is 453 lives, 453 families forever changed because of this worthy organization and its mission to spread God’s message as they care for people’s physical and spiritual needs.  You can help change a life through donations of your wheelchairs, walkers, and canes.  Other medical items, like prescription glasses and readers, are also distributed through Joni & Friends, giving the gift of sight.

Homecare Advocate: Wheels for the World, Glasses for Guatemala

Lambert’s co-owner, Elizabeth, purchased 100 readers and handmade 100 lovely felt cases that were given out on Rusty’s trip.  These glasses provide Guatemalans the opportunity to read the Spanish Bibles they are given by Joni & Friends.  What a gift.

Laura Payne, who works in the Knoxville Joni & Friends office and accompanied Rusty on this trip, was thrilled to see the work God did through Rusty in Guatemala. “We are so thankful for Rusty’s ministry to children and adults with disabilities as he customized wheelchairs specifically for them,” she said. “He used his big heart and his amazing abilities to make a difference in people’s lives. The support of the Wolfes and the Lambert’s Health Care family, which made it possible for him to be part of the Wheels for the World outreach team in Guatemala, was a gift to all whom Rusty served and the ministry team!”

We each have the potential for greatness.  We each have the ability to reach out and touch someone’s heart, to change someone’s life, to make this world a better place. To learn more about how you can make a positive impact, visit your local Joni & Friends chapter organization or call 1.818.707.5664.  We can always use another Rusty, transforming lives one by one.

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Wheelchairs for the World

Imagine having to rely on friends and family to carry you everywhere you go.  Spending virtually all of your time in isolation, without the ability to engage in the world.  Unfortunately, this is what happens to many throughout developing countries as their mobility impairment prevents them from connecting with the outside world.  The World Health Organization estimates that 18 million people are currently in need of a wheelchair, which can cost a year’s wages in some areas.  Meet one organization committed to providing wheelchairs and sharing the love of Christ through their mission work.  “It’s about changing the hearts, minds, and lives of people. It’s about transforming societies, village by village, person by person.”

Wheels for the World is a program by Joni & Friends that collects, refurbishes, and distributes wheelchairs to needy individuals in developing nations as part of their ministry.  What I particularly love about this Wheels for the World is that they set up permanent missions in these countries and tailor the wheelchairs to suit the terrain.  Their ongoing presence in these communities is essential to making a lasting difference and making a real impact.  Since 1994, over 63,000 wheelchairs have been distributed worldwide through their outreach efforts.

credit: Joni & Friends Press Kit

Our company owner, Randy, felt God calling for Lambert’s to get involved with this worthy program earlier this summer, so Randy got in touch with the local Joni & Friends chapter.  Through much prayer and preparation, our company sponsored our ATP (Assistive Technology Professional) rehab specialist, Rusty, to participate in the Wheels for the World trip to Guatemala.  Rusty’s professional expertise and spiritual desire to help others made him a perfect candidate, and he will oversee the process of fitting each person in an appropriate wheelchair.

Rusty flew out of Knoxville yesterday morning to begin what will be a great adventure.  During the next 7 days, Rusty and 9 others in his group will travel to Guatemala City, Retalhuleu, Quetzaltenango, San Marcos, and Soloa as they touch the lives of over 200 adults and children by providing them wheelchairs and Bibles.  Our company prayer group has been lifting Rusty’s group up each day, and Rusty’s wife says that so far he’s having a great time.

We’ll post an update on his travels once he returns to Tennessee, but in the meantime I hope you enjoy this video from a 2009 trip to Guatemala by Joni & Friends and Bethel Ministries International.


’09 JAF Trip

You can help by donating old wheelchairs and mobility equipment to your local Joni & Friends chapter. To learn more about ways you can get involved, visit the Wheels for the World site.

Gospel of Luke 14, “invite the poor, the crippled, the lame, the blind and you will be blessed…make them come in so my house will be full.”

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The Language of Love

What happens when words are no longer words?  When language bears no meaning, and everything is lost in translation?  Henry Walker wrote a collection of poems spanning 12 years as he deals with his mother’s dementia and sees the toil that Alzheimer’s takes on even the most beautiful of spirits.

He shares the struggles, confusion, and glimmers of hope as he learns how to speak a silent language with the mother he loves so dearly. The Duke Family Support Program shared his work in their 2009 Fall newsletter, and Henry offers it as a free download here.

Jean: “Let me tell you, we love you all, and we’re gonna keep on loving you as long as we can. . .
What’s good about you all is you catch on,
you catch on, you catch on,
and you know it’s not going to be perfect.”


Jean Walker, Henry's mother












A Little Help

by Henry Walker, November 17, 2001
if we’re lucky
we share our journey through this life
with guides who help us find our way
with partners who help us carry our burdens
with those we can help up with a hand
with those who will help us up,
parents,
friends,
spouse,
and,
if we can keep going long enough,
caregivers
through whom love can well up
so that their
hearts
and hands
and the fullness of their selves
hold us in their care
so that through the last days of our journey
we’re not alone and lost,
those who care for Mother these last days
are humble servants of the divine,
though Mother can feel lost she’s not alone
and those caregivers endure the storms of her frustration
so that the glowing sun of her self
can still break through,
through her bright eyes and laughing heart,
flowing from the love
with which she still embraces the world.



Down to the Core

by Henry Walker, March 17, 2000
I go into her room
and gaze at her sleeping peacefully,
a moment of doubt–whether to wake her?
a moment of worry of how much of her will wake up
and how I will react, and then I move on
and sing a verse of “Down in the Valley”
and then another and she softly wakes into a cough,
I speak to her, her eyes open, and she says
“Well, hello, Henry.”
We talk for awhile
but since so many words have lost their moorings to her thoughts
it’s hard to tell what we’re talking about,
after a few minutes I start to leave
so I say something and hit my leg– shouting out “By Crackey!”
a big grin fills her face and she hits her own leg, laughing “By Crackey!”,
a back and forth joke we did together months ago.
Singing and joking still work
music and humor mooring the words into meaning, fulfilling them,
using more of the soul to feel their meaning
than the airy world of language usually uses,
as we build fairy castles within our reason–
and when it flies away from us, burned like Icarus,
maybe we drop down to what we still have left,
so much burned away , but it’s still the core of Mother there,
burning with love, smiling with music and good humor,
what a tribute to her life
for her to drop down to such a wonderful foundation
she’s built with the spirit of her life.



Mother In Spring

by Henry Walker, April 7, 2001
The winding path I follow pulls me round again into Mother’s room,
first I’m out in the yard and spy her, sitting up, through the window,
we wave, I blow her a kiss
and she returns one,
I visit with her for a little while and she’s in a fuss
about that man who wouldn’t listen, who disturbed her,
getting from bed to chair
more effort than she wants to deal with
her fussing more than I want to deal with
so I excuse myself for a dip in the creek,
half an hour later I return to visit with her,
after she waves me in from outside
we exchange exclamations of how pretty it all is,
then I venture a comment about the corncob squirrel feeder
and her eyes narrow in confusion at what connection to meaning
my words might have,
I rephrase, go just for talking about squirrels, a favorite of hers,
and she responds with words that I think are about squirrels,
it’s like the ideas are still there, the images,
but the words her mind calls up fly off on tangents to the random
so we lose words as tools that each of us can use
to pry apart the walls between us
and let us in to understand the other,
for now we still have the tools of a twinkle in the eye, of a hug and a kiss,
for five minutes I stand by Mother while her eyes are outside
and her mind is full of story
which she tells me
which she tells me
which she tells me,
just like that,
full of repetition,
of repetition,
of repetition,
of kids she tries to help, of limits to her help
to her help
to her help,
words of love, of God, of dying but not knowing the hour,
and the story is real and powerful and clear to her while I only get glimpses,
I don’t say anything till she’s finished, because if I were to,
I would interrupt,
now at this stage in her life, it is not our place to interrupt, to disagree,
she has enough frustrations keeping the train on the track
and moving along to where she wants to go without us derailing,
she finishes and is quiet for awhile,
we look together at her favorite picture, twin babies,
and she tells me of their life
there, on the desk,
for 12 or 13 years she thinks, details don’t matter,
she’s hard at work building meaning with her life,
it’s like the stories of Faerie
and she’s stepping away into a different realm
and just because we can’t see it
doesn’t mean it isn’t real
doesn’t mean it isn’t real
to her,
I think a song for her would be great
a song with a lot of repetition,
so Joan and I sing of “coming ‘round the mountain,”
she enjoys it.



Like in a Dream

by Henry Walker, December 30, 2000
she talks to the pictures on the desk,
they live just like we do,
so I guess we’re real in some two-dimensional way
like a movie or dream,
her words tumble out
like she’s just woken up
and the dream’s still real,
so much now she doesn’t understand
so much now she can’t control,
and when she’s at her best now
she lets go and quits straining
to put back together what can’t be
so she’ll laugh and shrug away the problem
and she can let herself be happy in the moment
with teaching the pictures
talking at visitors
enjoying a meal, birds, snow,
she hates to be cleaned
and she can work to hold on to the fussing
till soon she forgets
and she’s back in the present,
the moment.


Alzheimer’s if often said to be a family disease since it touches us all.  Though over 5.4 million Americans are living with Alzheimer’s, many family members feel alone and isolated in their struggle.  Homecare Advocate gives a special thanks to Henry for sharing his work and intimate family situation with others so that they would not be isolated in their struggles with this mind-robbing disease.  For more information on this disease, warning signs, and ways you can help, visit the Alzheimer’s Association.

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The Good Fight

“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”  Margaret Mead

Homecare Advocate: The Good Fight (ALS)Most of last night was spent learning about Tim LaFollette, a young, talented, witty musician who was diagnosed with ALS (Lou Gehrig’s Disease) in ’09 at 29.  And his friends who decided that they were going to do something about it.

As I blogged in an earlier post, there is no cure for ALS.  Tim was all too familiar with this–both his mother and grandmother died from ALS when he was a child.  I don’t know that any of us really know how we would respond if we were told we have 12 months to live, the average mortality rate of his particular type of ALS.  Tim chose, according to his site, to refuse a silent death.

SO WHAT DO HIS FRIENDS DO? They create Often Awesome, an organization that helps Tim and his wife Kaylan through their journey with ALS.  They broadcast bi-weekly documentary segments about Tim online to raise awareness of ALS and to put a face on this disease.  They found the Often Awesome Army, a growing number of 1400 individuals committed to helping Tim by fundraising, donating, volunteering between nurse shifts, and spreading the word about ALS. They take his message viral on facebook and youtube.  Some have even gotten Tim’s signature swallow tattoo in honor of and in support of his cause.  What a message that sends to us all.

Scott Avett of the Avett Brothers was approached by the Often Awesome Army about helping raise money for Tim; he subsequently raised $3400 by auctioning off his original artwork online.  Scott said that using his artwork to help another has been “an awakening for me” that something as natural for him to do, like art, could serve someone in need.

Tim’s condition is so terrifying, and it conjures up a fear within me of dark days, of when we’re put to the test to truly be hopeful and truly keep our head up.  And that makes him a hero to me… (He) has a relationship with that impending end.  To conquer that fear or live with that fear or react to that fear in a positive way is how I want to be.  It’s how people should want to be.

And the effort is worth it.  “I have never seen an amount of miles put down, cash involved, people to a show, compliments in a bag ever that give you the fulfillment or reward that the quiet piece of service will doIt’s endless, and any of us can do it” Scott explains during an Often Awesome interview.   The Avett Brothers’ stage manager, Pete, was responsible for connecting the two together.  He says, “a lot of people have things, not necessarily money, but we all have a way to make a difference.  You just harness that and pull it together, and the things that can come out of that are incredible.”

It’s that commitment to making something better, to improving someone’s life through acts great and small that have really inspired me with Often Awesome.  Whether it’s recruiting the help of famous musicians, hosting community fundraising events, or raising enough money to purchase a wheelchair accessible van, this is truly an army who have channeled all of their love for Tim into something that actually makes a difference.  Their passion, energy, grit, and determination is an inspiration to all of us who are fighting for our loved ones to have a higher quality of life and have the support needed as they live with their illness or disability.

Watch the Avett Brothers and others helping raise money for Tim and watch more episodes on their Web site brought to you by AllAcesMedia.

So go, and be not simply good–be good for something.

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Journey Through Fire: ALS

I just ordered A Journey Through Fire: ALS–Memoir of a Caregiver written by local author and caregiver, Shirley A. Knight.  She chronicles the hard, arduous battle she and her husband, Bill, faced along his journey with ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig’s Disease).  With a background in nursing, she details the struggles with insurance companies , the strength she found in God, and the solace she found in friends and church family.  However, in the end, the book is also about her own survival and learning to live after the death of a loved one.

Her story is of interest both from a professional perspective as well as a personal one since my own grandfather died of ALS before I was born.  I never got to meet him, though I hear stories from my 91-year old grandmother about his days working on the railroad, how he courted her on the front porch swing that I now have at my own home, and how one afternoon they eloped (as she assures me most kids did “back then”) only to go back to their own homes and wait until the next day to tell their families.  I wish that I could have known him and that he could see how his 9 grandkids and 14 great-grandchildren turned out.

My grandmother sacrificed greatly to care for him while raising my then-15 year old father.  As I’m sure this book will reveal, caregiving is not always a joy.  Caregiving is sometimes the hardest thing one can do, the ultimate demonstration of selflessness as you wade through unchartered waters, in their case knowing not that you can change the disease, but that you can change the life of the one affected by it.  You can help that person have dignity and comfort in their final chapters.  You can stand beside them and be their strength as they learn to let go of this world little by little.

According to Mrs. Knight, A Journey Through Fire is written, “as a testament to God’s promise…I have learned that life, with all its uncertainties, somehow manages to go on; that strength and courage exist for our trials beyond what we believe to be humanly possible.  It has taught me that God is faithful.  Even in his silence, He showers us with blessings“.

The ALS Association is one of those blessings. Thousands of families turn to their local chapters seeking information, resources, and assistance as a loved one is diagnosed with this ugly, deadly disease.  This association advocates for those with ALS and is one of the world’s largest funders in research for a cure.  According to their Web site, 15 people are diagnosed with this disease each day in the United States, typically between the ages of 40 and 70.  It indiscriminately affects over 30,000 Americans, regardless of race, socioeconomic background, or medical history and robs them of their future, with 80% dying within the first 5 years.   But the ALS Association is hopeful for medical advancement that will lead to a cure.

I hope you’ll join me in reading A Journey Through Fire (which you can buy here); you can also read Mrs. Knight’s interview with our community paper that introduced me to this book.  Though Mrs. Knight provides great insight to the trials of ALS, you can help rewrite the ending in our fight against ALS.

Get involved in your local ALS chapter, be it through a donation, participation in a fundraiser, or even volunteering.  Knoxville’s annual Walk to Defeat ALS is coming up September 24th.  To find one in your community visit the ALS Association, where you can find local events and help change the world.

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Independence at Home

I awoke this beautiful 4th of July morning in the comfort of my own home, dressed, and got online to read the world’s happenings.  The cover story of the Knoxville-News Sentinel, my local paper, was about a young man about my age in a battle with the state to do these very things–live in his home with family, do activities he enjoys, and maintain his current quality of life in spite of having cerebral palsy.

Chris Hughes is one of 680 disabled Tennesseans who will have his current homecare services cut as Tennessee looks for ways to cut $47 million from the budget of Department of Intellectual & Developmental Disabilities (DIDD).  The state, like many others across the country, faces tough choices as they must find ways to balance the budget while caring for those in need.  Tennessee had been the only state to champion homecare beneficiaries needing two personal assistants to live at home, but the state is now forced to scale back services under the tremendous financial pressure of a lagging economy and a budget shortfall of $1 billion according to the Kaiser Family Foundation.  Though homecare is overwhelmingly  preferred by millions of the elderly and disabled like Chris across the country, cuts like what’s happening in Tennessee leave some with few options as their homecare services are stripped away.

Isn’t homecare less expensive? DIDD Commissioner Jim Henry said it may be true that even some high-need beneficiaries save a significant amount of money by receiving homecare services instead of going into “medically skilled community homes”.  Chris’ mother and caregiver, Cathy, is convinced that it is cheaper for her son to remain at home where his risk of infection is lower and quality of life is higher.  According to the article, Cathy “doesn’t think her son would get the intense attention he needs to communicate. She doubts he would get to listen to his music, read his books, go camping or fishing. She’s worried that, without her constant attention, he’d get sick or die from an infection or aspirating liquid.“  Serious concerns from a parent who sold her company to become a full-time caregiver for her son and, along with two aides, has kept Chris healthy with only one hospitalization in spite of being tube fed for years.

Cathy’s concerns echo across the nation as many caregivers struggle to find resources for their loved ones and provide a higher quality of life than an institutionalized setting can provide.  Using his computer to communicate, Chris slowly types, “I…don’t…want…go” when discussions about him entering a community unit an hour away arise.  Cathy explains to The Sentinel, “DIDD has not been our enemy; they’ve been the best thing to happen to us. … We want him to have quality of life. That’s what the state taught us.

With thousands more on the Tennessee DIDD wait-list, it is important to start asking how we can restructure our current health care services to better take advantage of homecare’s low cost alternative to nursing home care where millions like Chris across the country can be free and independent with their families.  Isn’t that what the American Dream is about?  As I see the flags waving and fireworks cracking around us today, my thoughts turn to Chris and how he deserves to have his own independence at home where he prefers to live, gets sick less often, and can maintain his quality of life.

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A Life Remembered

A Life Remembered: Ms. BeeToday we celebrate the life of a fascinating, vibrant woman who was able to live at home with dignity and a higher quality of life due to homecare services. “Ms. Bee” (name changed) was the kind of woman who put Life in living and seemed to magically energize a room with her presence.  She was bold, colorful, and passionate about her relationship with God.  The mother of several children, she taught me about how one can be a nurturing mother without giving up everything else that makes her, her.  She loved the arts and filled her home with treasured pieces from her world travels.  And that home was where she was able to stay as her health declined.

She was a blessed woman, fortunate to have supportive family who helped her maintain her independence at home by coordinating a caregiver to assist her, homecare equipment to help with mobility, and therapists and nurses to be sure she was well cared for as she entered into her final days.  Parkinson’s did not hold Ms. Bee back.  She challenged us to be real and lived with great grit and determination.  She taught the importance of community and was active in several non-profits and art groups as well as serving on the White House Commission on Aging.  Though disabled herself, she would call homebound friends to play hymns on the piano over the phone to them to lift their spirits.  Throughout the years of knowing her and witnessing her decline in health, one thing remained constant: her positive, humorous outlook on life and quest to help others see the hand of God in small, everyday things.   Her presence will be missed greatly, yet, as her loving nephew wrote in a poem dedicated to her, “The song of her life echoes in so many of us”.  A truly remarkable woman who left a rich legacy for us all.

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