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Motivational Healthcare Speaker: In Home care; 2008 Governor’s Caregiver Recognition Award

“May I have the envelope please...?”

   
On Wednesday, April 23, 2008 the Leakes along with eight other Virginia families attended the 2008 Virginia Conference on Volunteerism and Community Service and received the 2008 Governor’s Caregiver Recognition Award. The Council on the Status of Women, in partnership with the Secretary of Health and Human Resources and Virginia Department for the Aging, sponsors the annual caregiver award signed by the Governor of Virginia that “symbolically honors the thousands of caregivers who lovingly take care of family and friends day-after-day. Although the award is only given to a few caregivers, it serves to heighten public awareness of the contributions of all caregivers.”

We were thrilled to attend the banquet and are honored by the award. We use this opportunity to tell you about an extraordinary man, to say thanks, and to make the case for in-home care.

Father's Day 2008 update: We welcome writer Bill Lohmann and photographer Bob Brown of the Richmond Times Dispatch and are blown away by their stunning textual and visual portrait.

A note about the video Humor Helps Helping. This password protected video includes a humorous description of an event that occurred during our family's experience with in-home care. While the subject matter is intimate, the language is clean and the tone respectful. Enjoy!


How in the world did we get selected?

  • A successful nominating letter: My brother, Derek, writes well.
  • An awareness of the ‘all call’ for submissions. The award is given annually with a submission deadline in late January/early February. Information can be found at www.dss.virginia.gov. More on how we knew about the award is found below.

Contents

1) Dad: A portion of Derek’s nominating letter; Dad’s experience in the hospital; Home modifications after Dad’s return from the hospital; How the modifications were adaptations of changes Dad had made over the course of his life to remain independent.

2) Our experience with in-home care: What we hoped would happen; What has happened.

3) Thank You: Resources, Friends, Family.

4) Should you find yourself in the same situation: Encouragement to give it a try for his/her sake and for yours.

Jump to:
DadOur experience with in-home careThank YouShould you find yourself in the same situation


1) Dad

The caregiving recipient, Francis Leake, as described in Derek’s nominating letter:

“My father is 81. His muscular dystrophy (www.fshsociety.org) began to manifest itself when he was around 20. He was in the Navy then, doing his part for WWII. He was a flagman who would serve aboard two aircraft carriers. When the weakness appeared, he was sent home. Dad dealt with the disease as well as any confirmed child of the Depression; he made do. He stayed strong. He married. He worked. He had children — two boys who both inherited the faulty chromosome.

“Throughout the years, Dad did things his way. He did not follow the path of his father or brothers or sisters. His own path meant forming a tough hide and the strength of conviction. He developed into a tough, determined individualist. His dystrophy took away the ability to run and swim and throw a baseball. But he wouldn’t let it take away his walking, and he continued walking until he was almost 78.

“That year, he had a bad fall that severely bruised his left eye. His cheek was so swollen that he couldn’t see where he was putting his feet. If he couldn’t see where his feet were going, he couldn’t trust himself to walk. When he stopped walking, his legs finally weakened to the point that he never walked again. And the distinctive clomp...clomp...clomp was never heard again.”

 
Dad in May 2005 after his fall and before his stay in the hospital.

Later in 2005, Dad was diagnosed with renal cell carcinoma. He submitted to surgery. It did not go well.

Dad entered the hospital for a three day stay and minimally invasive laparoscopic surgery. He left the hospital five weeks and three operations later. Over a month on his back and unable to exercise, Dad returned home much weaker than when he had left.

 

Dad following his trip to the hospital

When Dad pressed the nurse call button the ‘we are on the way’ voice would answer. He waited the anticipated time and then some. In addition to the usual delay, it took a few extra minutes to assemble the team of nurses required to help him out of bed. Dad is not heavy, 5’ 11” and 160, but because Dad was away from his home and the adaptations he had created to take advantage of his abilities transferring proved an ordeal.

 
What we had seen in the hospital that we wanted to avoid

Seeing that a significant portion of the staff had to stop what they were doing in order to perform ‘slide board times 2 plus’ whenever he needed to sit up, make for rehab, go to the little boy’s room, Dad began to feel like a burden. He stopped hitting his call button and needs went unmet. And this was during the day. At night or on the weekends there was a skeleton staff and he waited longer.

Dad, who had been able to see to himself even after the fall that severely bruised his left eye, now needed help every step of the way. We learned the phrase ‘activities of daily living’ and that Dad would need assistance with all of the basic and some of those termed instrumental: www.cdc.gov.

Additionally, we ran into problems with some of the staples of long term care. The bedside potty was difficult for him to use. The external catheters Dad wore at night, as applied by trained professionals, did not stay on.

Dad would need physical assistance the rest of his life. He would never be happy again if every time he wanted to get out of bed, off the toilet, or onto his scooter it was Showtime! and ‘slide board times 2 plus’. He would need helpers who spent enough time around him to grow accustomed to his abilities, and he would need equipment that worked.

Home modifications to enable in-home care

 
Dad’s secretarial chair and walking stick were replaced first by a Rascal scooter and then by a Jazzy 1122 tilt wheelchair.

Some of the fixes could be achieved mechanically. Over the first few months of Dad’s return from the hospital and after lots of trial and error our house was modified to meet Dad’s new needs.

 
His standard toilet was refitted with a Takagi bidet.
In 2000, Dad mounted a hoist to the ceiling near his bed that he used to lift him up to a standing position (In the photos below, it’s flush against two unpainted blocks on the ceiling). In 2005, functionality of this hoist was augmented by hanging it from a ceiling track. When the time came to get in or out of bed the hoist lifted Dad up and once
 
Dad was raised higher than the mattress the hoist moved along the track with Dad suspended over the bed. Gone was the rehab hospital’s slide board; the number of attendants was reduced from ‘times 2plus’ to 1.

 
Getting into bed without sliding across a slide board or across the mattress reduced the risk of skin shearing. The track is not parallel or perpendicular to the bed but set at an angle to cut across the bed on a diagonal. Several angles were tried until the one was found that was ‘just right’ and dropped Dad into the bed where it eliminated his need to reposition. Mounting the bedroom hoist on a ceiling track system in the bedroom led to doing the same with one in the bathroom that travels over both the toilet and bathtub. The ceiling-mounted track has as its poles the center of the toilet and the front center of the spa seat.

 
The kitchen also was equipped with a hoist and track system. Dad uses this hoist when he has an appointment with the doctor, and he needs to transfer from his tilt wheelchair onto a scooter. He uses a scooter for doctor visits because it’s not as tall as his wheelchair making it possible for him to pass beneath the jamb of the van’s sliding door without having to duck his head.

When the time came to buy a new wheelchair accessible van, the old van was not traded in or sold; we kept it so caregivers would always have a way to transport Dad.

Living in the outer reaches of our county we had learned the distance from the local rescue squad could be detrimental to health.

Home modifications: A part of the legacy of changes Dad had made to stay independent

These changes were built on a history of successful changes Dad had made to live independently.

It had not been easy for Dad for some time.

The dining room table is worn down (point at picture to highlight) where the finger nails of his right hand would pinch into the wood as he held his right hand in place to push himself up into a standing position. The long bare spot on the edge of the table in the center of the photo is worn from his leaning forward to stretch his back. The legs of the table are a recent addition, standing in table mounts and on blocks to accommodate the height of his wheelchair. FSH muscular dystrophy’s advance is persistent and relatively predictable. Dad in the past had been able to anticipate its path and adjust before it was too late. In 1990 a few years before ADA and standardized codes, Dad built an accessible house — no steps, no thresholds, wheelchair-wide doors — that still serves him and his housemate today.

When it became difficult

 
When it became difficult getting onto his tractor, a 1952 Massey Ferguson, he built a “chicken-walk”, a wooden step, tied to it a rope and hung it from the chassis.
He’d lower it to the ground, step on it, mount the tractor and swing the chicken-walk up and over the chassis taking it along with him until he was ready a few hours later to dismount. He would then lower it, step on it, and then back onto the ground.

 

 
When it became difficult
climbing into his pickup he put a car battery in the truck bed, hooked the battery to a winch, hung the winch from a derrick and attached a seatbelt to the yellow strap hanging from the winch (In the photo, the seatbelt is not pictured but would have been attached to the clasp at the bottom of the yellow strap). He wrapped the seatbelt about him and buckled it to the clasp. He pressed the ‘ON’ of a toggle switch that activated the battery. He was raised about two inches to his tip toes and from this height could lift his right leg high enough to place onto the floor board of the truck. With a leg up he could begin sliding his body onto the front seat.
 

When it became difficult and he could no longer push himself up into a standing position at the dining room table he mounted a hoist to the ceiling above his bed (seen in the earlier photo near the ceiling track). He would get dressed sitting on the bed, strap into a seat belt that hung from a hoist that would lift him to a standing position. He would walk from the bedroom to the kitchen and sit at the table in a table chair. To keep his balance he walked with the walking stick and as he walked he pushed before him the secretarial chair. He would sit at the table in a table chair until the time came to get up when he would transfer to the secretarial chair and using the walking stick ‘pole’ himself into the bedroom and back under the stationary hoist that would raise him to his feet.

Mental modifications

He did not immediately embrace in-home care. As a “tough, determined individualist” who had helped run a couple companies, built a couple houses, put a couple boys through college, he did not take to having his sandwich cut into 9 bite-size squares. He had always found strength in making do on his own.

Even though our options were limited — Dad would not have met the physical qualifications for assisted living and the ceiling lifts he needed were not available in full care facilities — he did not go quietly. We got by for the first several months with short caregiving shifts: a five hour shift in the morning from breakfast to lunch and a three hour shift, dinner to bedtime, each night. Friends in the neighborhood stood by in the off hours ready to help if needed.

Partial care proved helpful but not enough. Thinking back, difficult moments — one person with muscular dystrophy trying to help another with muscular dystrophy to get in or out of bed or make potty — were nearly slapstick. On a rainy January morning at what we who love to be outside have come to call ‘the bottom of the year’ — when the overnight low and daytime high are at their lowest and remain so for over two weeks and there’s little prospect other than waiting out another day — we looked out the kitchen window at empty bird feeders where cardinals hunted and pecked for seed that was not there and decided we could use a little more help, too.

Jump to:
DadOur experience with in-home careThank YouShould you find yourself in the same situation


2) Our experience with in-home care

What we hoped would happen

Dad would get the help he needed and regain as much as possible his fighting spirit and retain the ability to provide. Someone would live here ready to help Dad day and night.

What has happened

We got what we needed. Strong bonds of friendship have formed between Dad and the caregivers; for some caregivers, departing for new jobs closer to town has proved difficult.

Thank you caregivers

A hug from Felicia
 
Complete caregiving nourishes the whole being. Dad fashioned himself into a provider; the caregivers who understand Dad’s mental image of himself know that the things he would have provided need to be done, too.

 
Cooking with Bobby
 
Tasks on the daily care plan are seen to and others added as well: household trash gets carried to the dump; recycling to the center. The birdfeeders are filled.

We are daily exposed to the best in others. When someone requires assistance with all activities of daily living, needs are readily identified and are recognized as legitimate. Humans want to show empathy. Serving others is selfish.

Sitting with the K Man

Jump to:
DadOur experience with in-home careThank YouShould you find yourself in the same situation


3) Thank You to our Local Resources

Cheapest/‘least expensive’ home health supplies goes to Discount Medical: The most knowledgeable and the most fun, too: Howard, Rick, Bill, Gerri, and Barry never let you leave without a laugh and a smile.

Did you know external catheters come in five sizes: small, medium, tall, grande, and venti...Enjoy your Starbucks everybody!

Built By Dominion David Tuck, my buddy since Laburnum Elementary listens, creates and isn’t happy until I’m happy. Roll-in shower for me; spa seat for Dad; air compressor activated sliding patio door — that’s him in the photos aligning the ceiling track. “Are you happy now, Brett? I’m happy, David.”

DP Stairlift: Dale Yeatts has put up ceiling tracks, installed and maintained lifts, kept wheelchairs rolling and scooters scootin’. When he’s here and has knocked off his task list he walks over to Dad and says. “Francis, is there anything else I can do?” Yes, there is this one thing. He does it, and he leaves things here better than he found them.

Mom and Max: We are fortunate to have at our disposal not one but two pharmacists. If a caregiver has a question about a drug contraindication, I’ll say, “That’s interesting, I’ll look into that.” I’ll call the staff pharmacist and say, “Mom....” She’ll say, “Max...” and Max will check his PDA or call his son, the doctor. Thirty minutes later I track down the caregiver and this time know what I’m talking about. If the caregiver’s been here for awhile she’ll say, “You’re very smart Brett; I knew you would know...and how’s your mother doing?”

HELPS Agency: Mrs. Coleman and Ms. Gordon, ReneeGordon5@aol.com, were a major early find: an ‘agency’ that provides non-agency caregivers. When a slot needs to be filled and we can't fill it ourselves, I call 804-648-2826 and say, “A little HELPS please ...” and a caregiver arrives at our doorstep.

So who told us there was such a thing as a Governor’s Caregiver Recognition Award: That girl from Modern Poetry class at William and Mary who kept touching me on the elbow

My friend, Cathy Walker, pictured here at Richmond’s 2007 Living the Dream Jubilee and caught in the act of touching someone on the elbow. If you’ve met Cathy you’ve been touched on the elbow. Cathy’s a long time political activist and The Walker Treatment is a gesture Lyndon Baines Johnson would have admired. She gets her energy from touching people on the elbow. And you get energy, too. As her favorite singer points out we humans can use a little human touch and when she reaches out you are connected with the others she’s touched and possibilities become available that did not before exist.

She was aware of our story and knew that if we were among the families chosen this would be a great way to honor Dad and at the same time make the case for in-home care.

Thanks, Cathy. Touching elbows works. Here’s mine. Press on.

A Do-Gooder cited earlier in a different role

It’s always this much fun for the caregivers. The sprightly ole gal, below, in her mid 70’s said she was able to provide care so we took her up on it and she gave us three weeks in the middle of the holiday season when good help was hard to find.

 
She’s laughing because I’ve just called in from the road to tell her what the pay is.

Thanks Mom; we’ll keep you in mind for next year.

And thanks to Max, too. Mom remarried several years ago, spends over half the year in a different state, and he misses her when she’s not home. She wanted to help and she did.

 
Derek, Anne-Marie, Philip and Mickey


Derek, Anne-Marie, and Philip

“I think of him every morning,” Dad says about his brother lost in WWII. Dad had left the aircraft carrier, the USS Franklin, when a few months later on 19 March 1945 it was struck by two 550 pound bombs killing 742 counted among them his brother, Philip. Derek and Anne-Marie named their son Philip after Dad’s brother and after Dad’s father and not a day goes by that Dad is not grateful.

Jump to:
DadOur experience with in-home careThank YouShould you find yourself in the same situation


4) Should you find yourself in the same situation

We are fortunate: Dad has no mental deficit; he sleeps through the night more times than not; we are not dealing with a new situation but with a very familiar disease that picked up a lot of speed — as if, by my estimate, Dad incurred 5 years of muscle loss over the course of a 2 month stretch.

The accessibility improvements cited above, while built into a house designed to be ‘muscular dystrophy friendly’, are in most instances adaptations that can be made to any house even one like ours with smallish rooms. The after-market improvements above were made in a 2500 square foot brick ranch within an 11’ by 11’ space in the bedroom and a bathroom measuring 7’ by 5’.

Muscular dystrophy is a muscle-wasting disease; so is aging. If there is someone in your family who needs help and whose needs can be met outside an institution, please try to make it work at home.

Why it works for us: When Dad has been outside

It’s more than a cute answer: it has worked for us in small part because the in-home care recipient likes being out-of-the-home, in plain air, outdoors where physical constraints are broken, emotions sort out, intellectual curiosity is fed, spirit is enlarged.

 
When Dad has been outside sitting in the bright sun or under the shade of a small tree he’s gotten all he could ask for; it works for him and it works for us, too.

When Dad has been outside...he is free...to watch his fruit trees bloom ...to point out to someone that “the azalea used to be over to the left a few feet but I moved it to the right so it would balance out the one on the other end of the sidewalk.”


“You see that...there’s a line that runs down from the chest across the belly” of a Rose-breasted Grosbeak as it stops at our feeder for a week in late April to recharge on its way north.
When Dad has been outside...he is able to fall back into the natural cycle, remarks on what he sees and is revived. Not so much transcendental as mere aesthetic appreciation.


 
“He’s bigger than the Indigo Bunting and he’s got some brown on his shoulder” of the Blue Grosbeak a week later that stays in a nearby field and makes a nest in the young sweet gums.
When Dad has been outside...he will return and report something new as “the most beautiful thing I have ever seen” and repeat it to himself to feel again the initial excitement “...I have ever seen.”
“I heard the Rain Crow and 10 minutes later the clouds rolled in.”

 
There’s a peach the deer haven’t gotten to yet.

 
A dragonfly that “just sat there...let me get right up on it.”

A Meadow Fritillary lands on the front of a wheelchair.

The “Iris our neighbor was digging up and throwing away; I said give ‘em to me...I know just where to put them.”

And “those Shasta Daisies they come up wild. You don’t have to plant ‘em and just look...”

 

When Dad has been outside...Grampy returns able to lift himself and others.

We will stay the present course as long as we are physically and financially able and as long as Dad’s medical needs can be met at home.

My role

I have lived with Dad since I graduated from college. Upon Dad’s return from the hospital, my role has been to manage the caregiving, support the folks who support Dad, and to observe: abstract a lesson that I can pass along to an audience — the simple life around us is a miracle — and to try to imprint that message on no one more than me.

After one of the unsuccessful operations of 2005, Dad encountered severe complications and was placed on a ventilator. For a few days we held our breath. It took long hours before the problems were pinpointed and treated and before the process of stepping off of life support began. There would be no guarantees; it was not uncommon for a patient with muscular dystrophy once on a ventilator to never come off. Over the next several hours as the ventilator was slowly turned down and the percentage of breathing it did for Dad was lowered from 100 to 75 to 50, we held our breath again. When the ventilator reached 50 percent, Dad was able to do the other 50 percent. When it did 25 percent, he did 75 percent. When the ventilator arrived at zero, Dad’s chest swelled heaving up and down under his own power. We took a deep breath, too. I told him in those first few minutes to keep hanging in there and that if he continued to recover I would do whatever I could to help him get well. He looked a little groggy so to check his hearing I said “If you come home, I’ll pick up the costs until you get better.”

Dad was an accountant with a good ear for numbers and his hearing checked out fine, I’m sorry to report, and for the first 16 months of his return home I paid for his caregiving.

Ouch.

Maintaining the cost of caregiving live-in or institutional does not come cheaply. With that weighing heavy on my mind and while carrying around a much lightened wallet, in January 2007, I deemed Dad’s health much improved, ‘you’re better now’, lack of medical training notwithstanding.

Dad began picking up the bill and has paid his own way for over a year.

School bell rings

Just as we learned the term ‘activities of daily living’ the time has come to learn a new term: ‘community based waiver’. I have enjoyed meeting the friendly people at the county social services office and look forward to a long fruitful relationship.

Among the things we’re learning

A) Medicaid long term care: institutional coverage vs. in-home coverage

For people who meet financial and physical qualifications, Medicaid pays for long term care. For those who qualify, Medicaid pays for 168 hours per week in a nursing home; for those who qualify and choose to live at home through a community based waiver, Medicaid pays for 40 hours per week.

Were Dad, who requires 24/7 coverage, to qualify for Medicaid and were he to live in a nursing home, Medicaid would pay all of his room and board, all 168 hours. Were Dad to qualify for Medicaid and he lived at home he would receive 40 hours of coverage; we would need to find funding for the other 128 hours per week.

B) Given his occupation and his love of numbers, I believed Dad could only as long as he had the funds from which to provide retain the sense of being a provider.

He no longer does yet still feels he is.

For so long he has moved us with the way he handled that part of his personal being determined by a faulty chromosome. But were you to talk with Dad he might say to you as he has said to me, “I never thought of myself as disabled”. Exposed and without funds it is much easier to see what he means by that now.

Homo sapiens share 99.98% DNA and can do with it as we wish — Solomon, Homer, Confucius, Lao-tze, Aristotle, Plato, Alexander, Ptolemy, St. Jerome, Chandra Gupta, Charlemagne, Al-Battani, Genghis Khan, Maimonides, Newton, Watt, Hume, Rousseau, Napoleon, Beethoven, Darwin, Cezanne, Van Gogh, Brahms, Bruckner, Helen Keller, Rachel Carson, FDR, LBJ, Phil Niekro, Phillippe Soul Wynn, Roy Orbison — that’s a lot of variation for the .02 percent.

Bigger than the unavoidable difference in the man resulting from a genetic defect belonging to just a few is his variance from the norm of the chromosomes common to us all. As determined as we may be by our shared human DNA, Dad has reminded us that by choosing to take up responsibilities, by choosing to take on the things that are difficult, by choosing to believe it is not written, the image of ourselves in our mind becomes the one that swells our chest, changes paths, creates outcomes and is more determining still.

Dad has spent his life building adaptive equipment, a successful business or two, houses but nothing quite like the mind’s architecture of his ‘strength of conviction’ — that there are beliefs more foundational than others, that the decay of physical power over the course of a lifetime amounts to less than the might we can draw from framing the mental images we make, and that of these there is no greater construct than the frieze we choose to forge of our family fact and fiction — a little smaller than an optimism and a little bigger than a minimalism it is wholly an edifice of self preservation, a ‘hide’ for oneself and for those whom one provides for a shelter within the shade.

We love Dad. As reported near the conclusion of a ‘comedy’ show...

“It’s hard enough to tell when our own needs are being met, let alone the needs of someone else. So I offer this brief portrait of someone important to me to illustrate what it sounds like and what to listen for when someone we care about is finding what suffices.

My 81 year old housemate, my dad. An insurance actuary would say my dad is a lucky man — the average lifespan for a male born in 1926 is less than 80. My Dad would say, “Yes, I’m lucky; I worked hard to be this fortunate.”

81 years of muscular dystrophy, 45 years of high blood pressure, 30 years of gout, 15 years of arthritis, nearly three years ago he had kidney cancer and after a long stay in the hospital he returned home minus a kidney and the ability to see to himself or any of his activities of daily living, requiring 24 hour 7 day a week care.

It’s hard for his housemate to watch. I couldn’t imagine what it was like for him, so I asked him, “Dad, are there moments in your day when any of this still feels worthwhile?”

 
It was July, he was outside our home resting in the shade of a redbud tree with his tilt wheelchair kicked way back and he was looking up at the sky.

He said, “This morning I saw altocumulus clouds pass by which is why it’s such a pretty day, but they signal that this evening we’ll be in for a change in the weather.”

I said, “Yes, Dad.”

“You hear that bird in the shrubs, ‘Cheedala, Cheedala, Cheedala.’ That’s a Carolina Wren and it’s her third brood. She’s a good mom. I’m glad I got to see her pull it off one more time.”

I was admiring the way he was adding to his narrative, Mother Nature his lifelong paramour. I appreciated the way he was ordering the remaining parts of his world. But that wasn’t enough for him, he wasn’t satisfied yet. He needed to know one more thing: “Son, are you alright?”

“Yes, Dad, I am.”

“Well, then... it doesn’t get any better than this for anybody...for anybody.”

The simple life around us is a miracle. Living is a constant, consuming act of creation.

The abundant existence has a time and a place...it is here and it is now — love life....

 

 

 

 


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