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A Child in the Hospital – 44 Surgeries Later!

Dear Friends,

Symphony of Soul is honored to provide “live musical medicine for the soul” to the young patients at Dell Children’s Hospital.  Looking so frail in their hospital gowns with IV tubes attached to their arms, the children slowly trickle into the activities room for the Symphony of Soul performances.  Nurses and family members steady them as they walk or push them along in a wheelchair.  It breaks one’s heart to witness their vulnerability.  Warmth quickly fills the room, however, as the music begins and the smiles spread across the faces of the young patients.

We all tend to feel so helpless when a friend or loved one is in the hospital.  How do we help?  What should we say or not say?  What should we do or not do?  It’s hard enough to know how to handle such tender situations with adults, but with children, it can feel unbearable and overwhelming.  The questions loom much larger:  How do we help this vulnerable little child?  How do we comfort his terrified mother and father?

Over lunch recently, I begged my dear friend and soul sister Sue Ann Zerre to write about her experience of supporting her son Zach through 44 major surgeries.  “Forty-four surgeries later!” I exclaimed.  “Sue Ann, do you realize the profound impact your story could have on other people?  It is extremely rare for anyone to survive that many serious surgeries, especially a child.  You’ve endured so much and you know from so many agonizing experiences with Zach what people can and should do to help when a child is in the hospital.  Please write about it and share it with the rest of us so that we can learn.”

With tears spilling out of her angelic blue eyes, Sue Ann softly smiled and agreed to give the writing a try.  Her son Zach is now 35 years old, happily married, working in Austin and a living miracle.  The trials Zach and Sue Ann endured would be unbearable to most of us.  We suffer greatly whenever a friend or loved one has to have surgery.  But 44 times is too much for anyone, especially a young child.  While she moves forward with writing, Sue Ann has given me permission to share a little of her story with us, as follows:

“When Zach was born, the doctors came to tell me that he wasn’t urinating.  After a few hours I was told that his insides looked like scrambled eggs; he didn’t have a bladder; one kidney was 10 times bigger than the other; his heart had a hole in it; and they gave him a 1% chance of surviving. I was devastated!  I knew in my heart that he had a purpose and was going to survive!  Zach had 10 surgeries in the first year of his life. During that time, we lived at Children’s Medical Center in Dallas.

There is so much to absorb when your child is born with any challenge, but being a single mom, and without much family support, it was up to me.  Zach slept on my chest the first few months in order to hear my heart beat.  As he grew, the doctors were encouraged but still very concerned about his chance of survival.

My personal faith and the grace of God are the foundation of our story.  The relationship with the medical community – the doctors and nurses – is a special ingredient.  It is so important to work with them.  We are all a team trying to extend the life of the child.  The relationship with the other moms and finding a support system was also very important.  I would sit with a stuffed dog snuggled up in my arms while Zach was in surgery.  The other moms started doing the same.  It gave us a sense of comfort!  As Zach got older, I was able to decorate his room with kites hanging from the ceiling, GI Joe figures, plants, and a lot of colored construction paper.  It softened the sterile environment of the hospital room.

I found that a lot of my friends couldn’t handle it.  A few would come up to see us but were then overwhelmed seeing all of the children with their challenges.  It would hurt my feelings but I accepted the fact that, until you go through something like this, you have no idea how it feels.  We need the support of family and friends.  If there isn’t any family, you make friends with the other mothers and you support each other.

When Zach was 8 years old, his roommate passed away and that was his first time to lose a friend.  It had a huge affect on him.  He had been in a protective bubble surrounded by the medical community.  It gave him a false sense of security and so it was a shock when his friend died.”

Sue Ann shared with me that nurses and doctors can make a positive or negative impact on the children and families, depending on their people skills.  The aloof or arrogant doctors and other medical personnel only add to the extreme anxiety that the families are already experiencing.  But those who are warm and tender and who take the time to communicate with compassion can have a very positive impact.

With this in mind, I am happy to report that my lovely half-sister Dr. Mary Kathryn “M.K.” Hyland Eagleton has begun her residency at UT Southwestern-Austin in pediatrics at Dell Children’s Hospital.  Needless to say, I am very proud of M.K. and I know that her brilliant mind, combined with her sweet, humble and gentle demeanor, will have a very positive impact on everyone around her at Dell Children’s, most especially the young patients and their families.

In addition to having compassionate caregivers such as M.K. on the premises, Sue Ann assures me that our Symphony of Soul musicians are providing a wonderful gift to the children and families whenever they perform at Dell Children’s Hospital.  There is nothing like music to lift the spirits of those who are in physical and emotional pain.  The families of the young patients say time and again that it comforts them to see their fragile son or daughter smiling and singing along with the music.  Sue Ann shared with me that when Zach was in the hospital, “People would bring their guitars and sing.  Music brings life to these kids,” she said.

I look forward to hearing more of Sue Ann’s story, for I know it will be a valuable source of insight for us all.  In the meantime, Symphony of Soul will continue serving the precious children and their families with love, compassion and, of course, “musical medicine for the soul”.

With blessings,

Leslie Hyland Rodgers

Alzheimer’s and Dementia: A Spiritual Perspective

Alzheimer’s and Dementia:  A Spiritual Perspective

Dear Friends,

The musicians on the Symphony of Soul roster often ask me how they should conduct themselves with the clients who have Alzheimer’s and Dementia.  As you know, we bring live music to everyone from infants to senior citizens facing challenges ranging from cancer to homelessness to mental illness to drug & alcohol addiction and more.  We serve very fragile populations and it is important to treat our clients with courtesy and respect.  Relating to someone with memory impairment can be an especially daunting task for someone who isn’t experienced with this particular population.

Dementia is a loss of brain function that occurs with certain diseases. Alzheimer’s disease (AD) is one form of dementia that gradually gets worse over time. It affects memory, thinking, and behavior. Memory impairment, as well as problems with language, decision-making ability, judgment, and personality, are necessary features for the diagnosis.” www.ncbi.nlm.nih.gov

 

Fortunately or unfortunately, I have a great deal of personal experience with this population, both through my 11 years of running Symphony of Soul and through my 7-year walk alongside my beloved mother who is now in the advanced stages of Alzheimer’s.  I am no medical expert, by any means, but from my heart to yours, I will share with you some valuable lessons that I’ve learned along the way.

A person with memory impairment is like a child.  Gradually stripped away of all skills, talents and high brain functioning, they gradually regress from high functioning adult to teenager, to grade schooler, to toddler, to infant – but never in any particular order.  If you love children, you will love the folks with Alzheimer’s and Dementia, just as I do.

They can be hilariously playful and funny and wonderfully tender and affectionate, just like a child.  Every day and every moment is brand new for them, just as it is for a child.  And, yes, just like small children, they sometimes have temper tantrums, anxiety and tearfulness over seemingly small things.  They have trouble expressing themselves in words due to a limited vocabulary, get frightened of things they don’t understand, and pick up things that look interesting to them – even if it’s your purse!  As the disease progresses, just like small children, they might wear odd combinations of clothes, get food everywhere when they eat and become cranky when they need a nap.

Like most children, they are starved for attention.  We must be willing to enter their world, wherever they may be in that particular moment.  At one care center, some of the women love to walk around with baby dolls.  Some days, the baby dolls are merely toys to them but on other days, those baby dolls are real babies.  It would be cruel and inappropriate for us to shame and criticize them and say “That’s not a real baby!  That’s just a doll!”  The loving choice is to say “Oh, what a beautiful baby!  What’s her name?  May I hold her?”  This honors the dignity of the person with Alzheimer’s.  As a general rule of thumb, never shame or criticize them.  They see the world through the eyes of a child and our job is to treat them with the same gentleness and patience we would a child.

There is one caveat, however:  they aren’t children.  They are adults who have lived long, rich, productive lives and it is important to honor their dignity and treat them with respect.  Therefore, we must never patronize them or talk about them right in front of them as if they aren’t there.  I also cannot stress strongly enough that we must never, ever try and force them to face the reality of their disease!

People with this disease, especially in the early stages, have a great deal of self-protective denial – and for good reason!  It is terrifying to feel your mind going away, to wake up not remembering who you are, where you are, or why you’re here.  In the early stages of the illness, people have moments of functioning well and moments of feeling completely blank of all understanding.  In my personal opinion, this is the worst part of the disease for them because they are aware enough to know that something is wrong with them but too terrified to face the dreadful reality.

There is no cure for Alzheimer’s or Dementia.  It gets worse and worse until the patient ultimately dies from the gradual shut down of the brain and all bodily functions.  Forcing someone to try and face that horrible reality is cruel and pointless, not only because of the grim reality of the disease, but because the disease strips away one’s mental and emotional capacity to cope with reality.  It would be like forcing a small toddler to face the fact that she’s dying of cancer.  The poor child would be frightened and traumatized yet with limited ability to understand what is happening to her.

As the disease progresses, our loved ones with Alzheimer’s and Dementia pass through all awareness to a place of no longer being aware that anything is wrong with them.  At that point, they will live more fully in the present moment and they will feel more and more at peace.  This is truly a blessing.

In the early stages, you will frequently have repeat conversations and it may try your patience.  Cherish those conversations, for in the late stages of the disease, you will no longer be able converse with them about much of anything.  Throughout the disease, they may have moments of disorientation where they want to “go home” or “talk to daddy” (who’s been dead for over 30 years) or fret over the fact that “I don’t have any money!  Who took my money?”  These moments can be frustrating, but rather than lose your patience, the most effective strategy is first, to assure them with simple explanations such as “We’ll go home soon,” or “You can talk to your daddy later today, okay?” or “You don’t need to worry about money anymore.  I am taking care of you.”

From there, simply redirect them.  Distract them by pointing out that beautiful bird resting outside on the window sill or suggesting you take a walk in the garden together to admire those beautiful roses.  Laughter is absolutely the best medicine.  If you can find something funny to laugh with them about, they will often forget their worries.  And, of course, music is always the best distraction, but I’ll go into that later.  Yes, you may go through such routines of comforting them and redirecting them several times in the course of an hour but the goal, always, is to keep them safe, peaceful and content.  Comfort them and redirect their attention to something that makes them happy.

From a spiritual perspective, our loved ones with Alzheimer’s and Dementia are our greatest teachers.  How many religious and spiritual teachings encourage us to live in the present moment?  We are encouraged to let go of the past and stop worrying about the future, for all we really have is the present moment.  Our friends in the 12-step programs encourage us to live “one day at a time” and, for someone in the throes of addiction, that might mean living “one minute at a time” or “one second at a time”.  Who better exemplifies living in the present moment than children and people with Alzheimer’s and Dementia?

Our Jewish and Christian friends remind us of Psalm 46:10 that says, “Be still, and know that I am God.” Our Buddhist friends encourage meditation to help practice this inner stillness and to learn the value “being” in the present moment rather than “doing”.  As one who has practiced meditation for 25 years, I can tell you that I still find it very challenging sometimes to just “be”!  No matter what method of meditation I’ve tried, it always proves to be difficult because we “healthy” humans are wired to get out and “do”!  As a Christian, I have felt most at home practicing the form of meditation knows as Contemplative Prayer for the last 8 years.  Even so, I am faced with the same challenge of sitting in the silence and “being”.

Our worldly perspective is to achieve, achieve, achieve!  We want more “success”, so often defined as more stuff, more status, more money, more fancy cars, more designer clothes, more, more, more!  But we are reminded in various religious and spiritual teachings that none of this brings us true and lasting happiness and we certainly don’t take any of it with us when we die.  We are taught that the things we focus on the most are the things we truly do worship the most.

As the insightful author David Foster Wallace points out in his book This is Water, “An outstanding reason for choosing some sort of God… is that pretty much anything else you worship will eat you alive.”  If we spend all of our time and energy on our job, then that is what we really worship.  If we’re obsessed with getting more and more money, then that is what we worship.  If we are addicted to alcohol and we live for our next drink, then that is what we worship.

The Bible encourages us to “come like little children to the Lord” Matthew 18:3.  To me, this means that we must let go of our worldly cares and our adult busy-ness and move into a pure state of childlike openness, playfulness, being-ness, awe and wonder.  It is hard to know God when we are so caught up in our busy adult lives and striving to achieve and acquire.  We miss moments of the divine when we remain so caught up in our mode of driving ourselves so hard.  What greater example of adults “being” as children and “living in the present moment” than our friends with Alzheimer’s and dementia?  It is the spirit of playfulness and innocence that opens the door to moments of Heaven or Nirvana here on earth. Could it be that our friends and loved ones with Alzheimer’s and Dementia are closer to an experience of God than those of us who are “healthy”?

It is in my frequent visits with my pastor Barbara that I have come to view Mom’s disease as an opportunity for spiritual growth.  Barbara encouraged me to watch Mom closely and “see how she does it”.  I was mystified at first but now I understand what Barbara meant.  In the worldly sense, it is devastating to see my mother’s decline into the disease.  Selfishly, I often miss being able to share experiences with her and confide in her like I used to. Like anyone, I have my days of darkness and despair over Mom’s illness.  Sometimes the grief comes out of nowhere and I find myself doubled over in tears, unable to control the sobbing.

From a spiritual perspective, however, I see that Mom is coming “unto the Lord” as a child more and more every day and I know that she is showing me how to deepen my own relationship with the creator.  When I remember to turn back to my faith, I am able to see beyond my selfish worldly desires and know in my heart that Mom is in a process of moving closer to God – and I have the great honor of watching, learning and witnessing “how she does it”.

I accept each moment with Mama as a gift.  Just curling up to her and holding her allows me to cherish her essence.  Sitting outside in the garden and holding her hand while we watch the birds fly by is a kind of meditation in and of itself.  I get to practice being in the present moment.  Laughing with Mama over the silliest childlike things is wonderfully refreshing to the “on-top-of-it” adult part of me that’s so busy getting things done.  And, of course, there is no greater magic than singing with Mama.  She has a beautiful voice and she loves to sing.

Besides physical affection, singing is our greatest means of connecting with one another at this point in her illness.  She may not be able to converse with me much anymore now that her use of language has fallen away.  But if I softly sing a song that she loves, she will sing along with me.  As if by magic, language comes back to her.  St. Augustine said, “Singing is praying twice”.  Indeed, like most people with Alzheimer’s and dementia, Mama may not be able to speak with ease, but she can still sing God’s language of music, the “speech of angels”.  Surely, when we sing together, we are “praying twice”.

So many people suffer nowadays with friends and loved ones in care centers for Dementia and Alzheimer’s.  Some people visit their loved ones a great deal and others avoid visiting because it is too devastating to see their loved one in that condition.  The frequent, painful lament is that Mom or Dad “isn’t there anymore” and “no longer knows me” and “died to me a long time ago”. Yes, in the worldly sense, we see less and less of our loved ones as the disease progresses, but I invite you, no matter what your religious and spiritual beliefs may or may not be, to consider that, in the spiritual sense, Alzheimer’s and Dementia present a different story entirely.  Mama may not seem to be here in the worldly sense but in the spiritual sense, she is more here, more vibrant, more alive and more present than she’s ever been.  All I can say to that is “Amen”.

With blessings,

Leslie Hyland Rodgers

For more information on Alzheimer’s and Dementia, please visit www.alz.org and www.ncbi.nlm.nih.gov.