death and dying


Carla is not adjusting well to this time.  It is an end of an era for her.  Carla  is a high functioning person with intellectual disabilities.   Both parents have died.  She became too ill to live in her own apartment any longer.  For health and safety reasons, Carla has been moved into a group home where she can receive medical attention and help with personal care.

Joseph is experiencing the opposite.  It is also an end of an era for him.  His mother’s health has forced his family to make a hard decision.  He, too, has been moved into a group home.  While living at home, Joseph was never allowed to dress, shave or clean himself.  He was told where to go and what to do.  At the group home, he is required to clean, dress and shave himself.  He must take part in the chores and activities of the household.  He is required to do his own laundry and clean his own room.

Carla’s personality is softly pleasant.  Her manners are tender and appealing.  Joseph’s manner is gruff and abrasive.  He never walks.  He struts, giving the impression that he thinks more highly of himself than he ought.

unhappy catWhile Carla finds group home living restrictive and oppressive, Joseph has never had more freedom.  Carla has fewer chores and responsibilities now that she no longer lives in her own apartment. Someone cooks her meals, helps her with her household chores when necessary.   Without even informing her, the staff completes the paperwork required by the government which she often hid rather than traverse through the unintelligible maze of questions.  Carla resents the assistance she receives.

The demands on Joseph have multiplied but his finds increasing freedom in this new arrangement even though it is wrapped tightly with chores and requirements.  Of course, Joseph has never been one to complain.  He takes life as it come; and he trusts the Lord to work things out for his benefit.  Joseph often prays out loud, seriously or happily asking God to help him.

Carla admits that she almost never prays.  The requirements of “religion” are much too difficult and confining.  Carla cannot grasp the concept of God being a friend–her friend.

Joseph’s cognitive level is far below Carla’s but his faith quotient soars far above most other people.  He prays and expects an answer “because God loves me.”  He believes that “all things work” for his good because “God said it in the Bible.  Therefore, it’s true.”

In short, Carla is miserable and has been for years.  Joseph is joyous. Each day is a welcomed adventure.

sitting on a porchEach of us come to times in our lives when things radically change.  We graduate from college.  We get married.  Our first baby is born.  The first child enters kindergarten.  Then poof.   In a few short days, she is entering college.  The children leave home.  The children come back home.  A spouse dies.

Our IQ does not determine the position of our misery barometer.  Through prayer and fellowship with our Heavenly Father and Savior, Redeemer, Friend Jesus our barometers are adjusting.  They determine the joy and love into which we motivate through life.  I am praying that my life will follow the example set by Joseph.  Even though, he is a young man with a lousy personality and low IQ.  Joseph has tapped into the life-giving force of the Lord Jesus.  His example gives my hope and joy.

angelA higher functioning person in Special Gathering wanted to know how to get in touch with a medium so that he could speak with his dead relative.  Because of the teachings in the Scriptures about angels appearing to people, he had become confused.  In addition, a member had been medically dead for a very short time and he had reported that he had gone to heaven. This was my explanation to him regarding this important.  

A Brief Explanation of Angels

Part of the problem may be a misunderstanding of who angels are.  It is the popular misconception that when people die they become angels.  Even though it is commonly accepted by modern culture, this is not true.  And it is not supported anywhere in the Scriptures.

Angels are not human beings and people don’t become angels.  Angels are a separate creation by God who predate human beings.  There were angels before there were humans.  They are similar to humans in their form; but they are not humans.  They have supernatural powers that we do not have.

The Bible does not speak of angels as male or female.  They appear as large, strong males most of the time.  However, in modern and ancient cultural pictures, they are depicted as babies with wings or in a more feminine form.  In the Scriptures, angels are given what we in the Western Culture would call male names.  However, they are non-sexual because they do not reproduce.  They are spiritual heavenly beings who live forever.  In the Old Testament, Jesus is spoken of as The Angel of the Lord.

When the angel Lucifer sinned against God (He wanted to be equal with God), he was thrown from heaven and it is indicated in the Bible that Lucifer was given dominion over the earth.  It is believed that Lucifer totally destroyed the earth to such a point that God reclaimed the earth and gave dominion to Adam to “keep”  (the Hebrew word used means safeguard and protect) the earth.  When Adam sinned, the effect was that Adam gave dominion of the earth back to Satan.

When Jesus died, he took dominion over death and hell.  He reclaimed the earth for God and for man.  His resurrection sealed the defeat of Satan.  That is why Satan killed Jesus.  Satan did not understand that Jesus would pay the price for our sin and be resurrected.

When we are born, we are spiritual beings because we are part of God’s creation.  God breathed into Adam a human spirit.  After the fall, we are still part of God’s creation and spiritual beings but we are part of the Kingdom of Satan until we make a free-will choice to accept Jesus as our Savior.  Then we are children of God.

It does not matter whether we are born-again or not, attempting to speak with the dead is forbidden.

Jesus told us in the New Testament that we all have an angel that is with us at all times.  They are there to protect us.  They are not the Holy Spirit who is our guide and teacher.

These are not things that would be taught in a Sunday school class at Special Gathering.  But they are things which the Bible teaches.  Much of what we know about angels is found in the Old Testament.  When Jesus speaks of angels and the New Testament speaks of angels, it is always in the context of what we know about angels from the Old Testament.

Again, trying to speak with a dead person is forbidden.  You want to stay as far away from any hints of this kind of practice.

autism societyThe Autism Society continues to mourn the lives lost on Friday, December 14 in Newtown, Conn.  We join the nation as we keep our collective attention focosed on those directly impacted by this tragedy. In the nation’s rush to understand the reasoning for such an awful occurrence, the conversation evolved to  include the alleged shooter’s possible autism diagnosis. The Autism Society feels it is imperative to remove autism from this tragic story.  Race, ethnicity, gender, and sexual orientation are seldom, if ever, linked to the actions of an individual in a causal relationship.  It is imperative that developmental disorders and disabilities be treated in the same vain.

Further, the Autism Society is committed to informing, educating and securing appropriate services by providing reliable and unbiased information. To that end, we are compelled to dispel any myths about individuals with autism: No evidence exists to link autism and premeditated violence. Suggesting otherwise is wrong and harmful to the more than 1.5 million individuals living with autism in the United States.(1) Individuals with autism and those with other disabilities are more likely to be victims of violence than the perpetrators.(2) Many of the individuals with Asperger's syndrome who have committed crimes had co-existing psychiatric disorders.(3) Individuals with autism who act aggressively typically do so because they are reacting to a situation. 

Please do not judge any individual with autism based on the discourse surrounding Friday's tragic event. Instead, please strive to educate and inform your communities. Help the Autism Society ensure that individuals with autism are not marginalized due to a misunderstanding of a complicated disorder. 

Please consider forwarding or sharing this information with a friend. 1. Gunasekaran, S., & Chaplin, E. (2012). Autism spectrum disorders and offending. Advances in Mental Health and Intellectual Disabilities, 6, 308-313. 2. Hughes, K., Bellis, M. A., Jones, L., Wood, S., Bates, G., Eckley, L., ... & Officer, A. (2012). Prevalence and risk of violence against adults with disabilities: a systematic review and meta-analysis of observational studies. The Lancet. 379, 1621-1629. 3. Newman SS, Ghaziuddin M: Violent crime in Asperger syndrome: the role of psychiatric comorbidity. J Autism Dev Disord 39:1949-52, 2008.   

FORWARD: http://support.autism-society.org/site/R?i=BwuaLdwzQuFm3woiaz--Zw

Read more: http://blog.beliefnet.com/simplelife/2012/12/no-link-between-autism-and-planned-violence.html#ixzz2FhYEsXhG

Ethel was a Bible teacher at Special Gathering.  Additionally, she wrote many books for the mentally challenged community and they were published in our monthly newsletter.  Ethel and I shared a passion for writing and Special Gathering.  Therefore, we became good friends through our shared ministry concerns.  In addition, we both excelled at “going to lunch” and we practiced that part of our friendship often.

Ethel wrote for our monthly newsletter “Connecting Point,” and she was incredibly faithful in her efforts.  Even after she moved to Volusia County, Ethel always met our deadlines; and she wrote with great skill and feeling for the special needs population.
As a Bible teacher, Ethel could not be matched.  She taught the Scriptures with a keen eye for truth and clarity.  Her class was a verse-by-verse discussion study for our readers.  It has become the model for our leadership and readers classes.
My first view of Ethel came 22 years ago through Sarah, her daughter who was mentally challenged.  It was my first year at Camp Agape, our annual ministry retreat.  Sarah was my bunk mate.  I had the top bunk and she had the bottom.
On Sunday afternoon, after two days of camp, I thought I was too tired to climb to the top bunk.  Therefore, I decided to lay on Sarah’s bottom bed, thinking that she would never notice or understand.  I was wrong!
Sarah came into the cabin and jumped me.  “Get off my bed,” she insisted. “You can’t get on my bed!”  Ethel had taught Sarah well.  It is vital for our population to understand their rights and Sarah knew that I was an intruder and she wasn’t intimidated by me.  Ethel treated Sarah as an adult, and she allowed Sarah the dignity of being valued for being a child of the Lord.
One year, in touring our campgrounds, Ethel asked Sarah what she liked best about camp.  Immediately, Sarah said, “Pool.”
Shocked, Ethel said, “You don’t know how to play pool.”  Sarah walked over to the pool table and demonstrated to her mother that she certainly did know how to play the game.  Ethel laughed, “Guess she showed me.”
Ethel was never willing to compromise her faith.  Yet, she shared the message of Jesus with compassion and great love.  Her greatest legacy is her faith in Christ and love for all people but especially for the men and women who knew and loved her through her ministry within the mentally challenged community.

In the early 1990’s when Nancy became a consumer at ARC in Vero Beach, Florida, she told her supported living coach, that her life goals were to bleach her hair blonde and go to California to become Marilyn Monroe. Bleaching her hair blonde was easy, getting her to California, proved harder.

Nancy was never a person who fostered small dreams or ideas.  Born in Charleston, West Virginia, Nancy was 15 years younger than her sister, Roxanne. But Roxanne took her everywhere. When I inquired about this, Roxanne said, emphatically, “Of course, I took her everywhere.  She was my little sister.”  Nancy was born with Down’s Syndrome; but she never allowed her disability drive her into a corner.  Perhaps “hanging” with her teenage sister fostered those large dreams and desires.

Nancy’s life in West Virginia revolved around swimming, summer camp, school, then ARC, the singer, John Denver, The Monkees and her best friend, Susie.  Nancy and Susie were together throughout their school years and at ARC.  Eventually, they became roommates.

When the unthinkable happened and Susie was diagnosed with terminal cancer, Susie was moved into a nursing home.  Out of compassion, her parents believed that it was best for Nancy that she not see Susie again.  But when Roxanne and Gary came to visit the family and heard, “We threw a fit,” Roxanne said.  The parents gave in and Nancy was allowed to see Susie.  Later, as the disease took its grip on Susie’s life, she moved back in with Nancy.  “Susie died in Nancy’s arms,” Roxanne reported.

As the health of her parents grew more frail, Nancy and her mother and father moved to Vero Beach.  It was here that Nancy revealed her desire to become Marilyn Monroe.  She adopted Star Wars and wrestling as a new passion.  Friday night was “Smack Down” Night.  Nancy and her friend, Annie, spent their Friday evenings with The Rock, Chris Jericho, The Undertaker and Stone Cold.

Her one enduring joy, however, was men.  Most men she found attractive; and she was convinced that nearly every men found her irresistible.  She often recited the men that she was soon marry.  However, in the middle of her list, she would stop and say, “No.  I think I’ll just marry Jackie,” who was her black cat.

One evening, Nancy and her roommate decided to go out to dinner.  They called a cab and told the driver to take them to The Patio restaurant.  They ordered dinner and wined and dined for several hours.  Finally, when the waiter came with the bill, he discovered that the two charming ladies had not brought any money with them. Undisturbed, Nancy said, “Call my supportive living coach, Diane.  She’ll take care of the bill.”

Fortunately, the restaurant owner did know Diane.  He called her and explained the situation.  Diane arrived, paid the bill and began an intense retraining program regarding appropriate behaviors in a public restaurant which included emphasis on the fact that you always have enough money with you when you go out to eat.

It was my privilege to carry Nancy to and from Special Gathering for about seven or eight years.  She and I would have great conversations about the Lord but Nancy didn’t always have her theology correct.  “I love Jesus,” she told me one week.  “But I’m not a Christian.”

Of course, I could not let that go without questions.  “Nancy, have you asked Jesus to forgive you for the bad things you have done?”  Yes.  “Have you asked Jesus to come into your heart and be your best friend and your boss?”  Yes.  “Then, Nancy, you are a Christian.

“No, I’m not,” she said with emphasis, “I’m an Episcopalian.”  Most weeks, she told me that she wasn’t a Christian, she was an Episcopalian.  Then some weeks, she was a Methodist.  I think she died an Episcopalian.

Nancy was never a weak person; but she wasn’t ashamed to go to the Lord for strength and comfort.  She often asked for prayer.  For many years, she sang in the Special Gathering choir.  She would share her faith wherever we sang by her great smile and winning ways.  “Nancy was always smiling,” so many people said after she died.

Joanne was her caregiver for several years before she had to go into the nursing home because of Alzheimer’s.  She, Annie, Laurie and Eric often visited Nancy as her health declined. Nancy always remembered Annie’s name and recognized Laurie.  She would smile and put out her hand reaching for each visitor.  Of course, Nancy never lost her ability to flirt.  Even at their last visit a few days before she died, Nancy threw kisses at Eric.

At last, her body gave out and she slipped silently into the arms of her Lord, who is also an Episcopalian and a Methodist.  She has left us but we have our memories.  Her smile.  Her joy.  And I will always remember our conversations about the Lord in the night as I drove her home from a choir performance or Special Gathering.

Yesterday was one of those days.  For months, I’ve tried to figure out how The Special Gathering of Indian River Christmas play should be written.  Special Gathering is a ministry within the mentally challenged community.  Our population learns more slowly than normal; yet they are adults.  It is important that the play is not only educationally appropriate but also appropriate for adults.

Regarding the play, I write it.  Therefore, I begin searching for ideas for the next year as soon as the play is written for the current year.  Sounds as though I’d be way ahead of the game by mid-summer, doesn’t it?   That could be true if I can “see” the logistics of the play.  Many years I’m a bit stumped regarding some portion of the production.  My idea this year comes from the participation of the youth department at our program in one of our programs.  Yet, how do I make it appropriate for our other program.

During my prayer time yesterday, I suddenly knew how the play should be written so that it would be age appropriate and would easily adapt to our other program that does not have youth participation.  I began working on the play about 6:30am.  By 9:30am, I was ready to send it to our staff and volunteers for their suggestions and comments.

Then I began working on other deadline projects.  I was able to complete them all.

By the end of the day, I was thrilled at the productive time I’d experienced.  As I crawled into bed, I was pretty satisfied with the accomplishments of the day.  I prayed, “Lord, thank you so much for the great day.  I feel your presence and your pleasure because of all the work I was able to do today.”

Gently, I felt the Lord’s response, “Linda, I’m with you, leading and directing you at your least productive day, also.  Sometimes I have a greater goal in your life than finishing tasks.”

Whoa!  My tired brain soared.  Of course, it is great to be able to complete tasks.  But what about the days that you work diligently and nothing is accomplished.  Is God pleased with your failed efforts?  Will the Lord honor us, even when we fall short?

Johnnie and Peter Lord

Years ago, Johnnie Lord, the wife of well-known Pastor Peter Lord, said that the Lord assured her that he was much more concerned about the intent of her heart than her actual performance.  While the Bible teaches us this truth, we forget.

How has God assured you that he loves you even when you don’t “perform up to par”?  Are you able to pass on to others the same gace and mercy?

It is probably true that you will be asked to do a funeral for one of your members at some time in your ministry.  There are specific things which I have observed from pastors who are successfully able to capture the essence of the person and still glorify Christ in a funeral sermon or eulogy.  Here are some of those things which you may find helpful.

  1. First, find a hook.  This is something about the person that seems to embody their personality or mission in life.  It may be a phrase, a sentence or an observation.  Most often this should come from the family.  In trying to find a hook for one man that I had never met, every person I spoke to said, “He was a good man.”  I kept trying to find something else about this man until I realized:  This was a truly good man and that was what family wanted to said about him.
  2. Interview as many members of the family as possible to be able to grasp what is meaningful to them.  Ask probing questions.   What is the thing you remember most about Phil?  What did he do during his free time?  Tell me a little bit about his life.  When did he become a Christian?
  3. Everyone has some humor in his or her life.  Try to find it and use it.
  4. The deepest, most moving memories are best wrapped with a glimmer of humor, if possible.
  5. Don’t be afraid to share deeply personal things that the family has given you permission to share.  This is a time for them to hear their words echoing back to them in a positive message of hope.
  6. If the person is not a Christian, amplify some good traits.  Then emphasis that if she could stand before you today, she would want each person present to know Christ.  We know this is a true statement without saying things which are not true.
  7. Use a Thesaurus in finding different words to express what you want to say.  Don’t limit yourself or your imagination in your sentence structure or your vocabulary.
  8. Use Scriptures to say the things you desire to say about the resurrection.  Then don’t forget to speak about the hope of the resurrection of Christ in each sermon or eulogy.  That, after all, is why we have sermons at funerals.
  9. Keep it short.  Limit yourself to a maximum of 10 minutes of sermon.  I also try to limit the Scripture readings to five to 10 minutes.  Intersperse the Scriptures throughout the service.  Find my favorite Scriptures here.  

Remember, above all, you are speaking the heart of the family and the heart of Christ.  When the two are in harmony, it’s a wonderful union.  When they are divergent, God will help you to find ways to honor both.

God loves the broken hearted and desires to heal those who grieve.  It is a wonderful opportunity to show the love of Christ to people who are wounded and hurting.

If you are sharing with a family of a mentally challenged person who has died, this is especially important to remember and acknowledge their grief.  God wants to touch this family in a real way and you can be His instrument.

Here is a eulogy that hopefully will help you to see how these steps can be put together.

Eulogy

Leslie Ann 

          The Apostle Paul writes in the Holy Scriptures that the joy of the Lord is our strength.  Proverbs reminds us that a merry heart is as good as any medicine.  On December 19, 1972, God gave to us an ambassador of laugher and giggles when Leslie Ann  was born to Priscilla.

Raised in a strong Catholic family, faith and commitment to the Lord were the backbone of her existence.  As a natural outgrowth of that love for the Lord, her first communion was a joyous time shared with her mother, grandparents, her Uncle Jack, his two children and the community of believers.

Later, as Leslie matured into adulthood, reaching out became an anchor of her commitment to the Lord as she endeavored to share her faith.  Each Christmas at Special Gathering, we collect gifts for the Haitian children.  Leslie was the first one to bring her gifts.  But she didn’t stop there.  Sunday after Sunday, she would bring toys and school supplies for the young children who have so little.

Of course, Leslie understood the value of money.  The best presents she received were always money or gift cards.  No birthday was complete without a card filled with big bucks. Yet, she never totally comprehended the complete concept.  After obtaining her first job came the wondrous first paycheck.  Excited by this new found wealth, Leslie wanted to put it in the bank as the first installment toward buying a new Corvette.  Somehow the fact that it was only $4 escaped this young financier.

Leslie had a knack for remembering names and addresses. She remembered the full name of everyone she met.  But phone numbers were her specialty.  She spent hours on the phone with her various boyfriends.  Mark from New Jersey was her first real boyfriend.  For more than ten years, they conversed every evening until it was time for them to go to bed.  Last July, when Leslie and her mother went back to Jersey, Mark begged them to come back in the spring because he needed a date to the prom.  “You know my girl’s down there with you,” Mark told Priscilla pensively.

Though she seldom complained, at times her disability would hinder her from doing the fun activities that the other family members enjoyed.  One day, Elaine, her step-sister-in-law, could no longer take her mournful expression as the other young adults scooted around on jet skis.

“I’ll take you,” Elaine volunteered.  Leslie was in her mid-twenties but not too old to giggle.  Unfortunately, in her enthusiasm, Leslie leaned too far and tipped over the jet ski.  In an effort to save herself, Leslie quickly grasped the closest thing to her–which was Elaine’s throat.

Her mother was following her in a boat.  She and the driver of the boat scooped Leslie up from the water within a few seconds.  And Elaine is still thankful.

Leslie never liked being left behind.  And she didn’t like losing when she played games.  After her great nephew, Colin, was born, she would spend hours coloring and playing games with him.  He was her little buddy.  But her competitive nature didn’t die easily and she didn’t enjoy losing, even to him.

Vincent, Colin’s dad and her cousin, was two years younger than she.  He, naturally, was her big buddy.  As children the cousins etched together a life-long bond.  They spent hours building towers with blocks.  After the construction was felled, they would head for the hallway and a ball game.  For Leslie, the fun with Vincent was never in the game or the competition but in the giggling.

About ten years ago, after moving from Jersey, Leslie began attending Special Gathering.  Later, she joined the choir. Her commitment to the choir was remarkable and we came to lean heavily on her strong–though never pitch-perfect–voice.

Every Saturday evening, she’d ask her mom, “Do I need to wear my choir uniform to Special Gathering?”  Her mom would explain that the choir wasn’t singing at another church, only practicing.  “Are you sure?”  Leslie would enquire suspiciously.

One of Leslie’s favorite songs was a selection from our choir.  Often before practice, we would sing it as our prayer.

Change my heart, Oh, God.

Make it ever true

Change my heart, Oh, God,

May I be like you.

 You are the potter, I am the clay

Mold me and make me.

This is what I pray.

Change my heart, Oh, God.

Make it ever true.

Change my heart, Oh, God.

May I be like you

As Leslie slipped into eternity last Saturday, I believe she met the Lord giggling.  You see, her disability and pains are gone.  She isn‘t hurting or afraid anymore.  (show the crystal bowl and the paper cup)

On the Friday evening that Leslie was admitted to the hospital, she was in agonizing pain.  Her stomach had ripped and her lungs were full of pneumonia.  She would code three times before they could get her into surgery.  Fighting frantically to save her life, the technician began taking X-rays.  Explaining to her what they were doing, the tech said, “We are going to hold up this piece of metal and take your picture.”

Leslie weakly nodded her understanding.  As the technician put up the metal sheet to her chest, ready to click the X-ray, Leslie said, “Cheese” and grinned for the picture.  With each X-ray she said, “Cheese” and smiled.  As we remember Christ’s ambassador of giggles, we cannot weep for her, though we will often shed tears for ourselves.  She would demand that we gratefully grin and say, “Cheese.”

Today is a day I will NOT remember.  I got up at my usual 4:30A.M.  After my prayer time, I went into the kitchen to start a pot of decaf; but instead, I had a text message from my son.  I sat down on the couch to answer the message.  After I pressed Send, I closed my eyes and went back to sleep.

The rest of the morning is a bit of a fog.  I woke up a few minutes before 9A.M. to the sound of cable news.  Sometime during those four hours, I’d turned on the TV and fallen back asleep.

Perhaps this is a good thing that I’m having a forgettable day because the last three days were pretty significant.  In fact, I was so excited about the happenings of Friday, Saturday and Sunday that I awakened at 1A.M. each day and I couldn’t seem to get my mind to stop revolving and rehearsing the events of the coming weekend.

To others, there may not be much significance regarding what happened.  I was directing one of the Special Gathering choirs on Saturday and again on Sunday.  The Special Gathering is a ministry within the intellectually disabled community.  Our mission is evangelism and discipleship.  I’ve been a choir director for a Special Gathering choir for about 22 years now; and I’ve not lost the joy of experiencing their performances.  In addition, they share my excitement about being given the privilege to minister and sing for the Lord.

In contrast, last night, I watched an extremely painful interview with Whitney Houston by Oprah Winfrey.  The painful thing was that Ms. Houston had lost the joy of singing.  Again and again, Oprah tried to pull from her some recognition of sorrow for having lost the opportunity to sing for almost 10 years.  But the only response from this extremely gifted woman was “I had all I needed.  I didn’t need money.  I had everything.  I didn’t need to sing anymore.”

Of course, Ms. Houston wasn’t singing for the Lord and that may have made a difference.  Nevertheless, I could not help but compare the joy The Special Gathering choir has in worship and ministry to this sad woman who “had everything.”

To be honest with you, The Special Gathering choirs are “better felt, than telt.”  Some of the choir members would even be put into the category of  Tone Deaf.  Yet what they lack in talent, they make up with joy and excitement to be serving the Lord.

Forgettable days should happen on occasion and I’m glad that for me it means a day of rest.  But to lose the joy of a new day would be sad beyond imagination for me.

What are the things that give you the most joy in your life?  Are forgettable days times of rest for you?

Read more: http://blog.beliefnet.com/simplelife/#ixzz1myQZ6EIm

One year ago tomorrow, my husband came home from the skilled nursing center to die.  While I often say that I don’t live in denial, I had no idea that three months later, he would be dead.  For about a week, the nursing center had been telling me that I could not take care of him if I took him home; but I knew that I would not do heroics regarding his care.  Additionally, he greatly desired to come home.  I had been preparing financially for his care for years and we were ready to take on this monetary responsibility.

For two decades, I’ve observed families living with people who have disabilities and I’ve learned a great deal from their wisdom and mistakes.  Yet, I was struck a month later when I realized that my husband’s Hospice diagnoses had changed from “late-term dementia” to “adult failure to thrive.”  Simply speaking, this means that my husband was in the dying process.

As I remember the day he came home, so many things flood my mind.  Here are some things I learned.

  1. He was constantly falling in and out of reality.  It became my job to remind him where he was and who was taking care of him which greatly relieved his anxiety.  As each caregiver entered his room, I tried to reintroduce them.  “Frank, Terry is here.  Remember she is here to take care of you today while I’m going to work.”  
  2. I learned to leave him alone because that was his desire.  Additionally, he was no long about to respond.  I had no idea how much he understood; and I was concerned that when there were distractions he knew more about his atmosphere than we thought.
  3. He slept most of the day; and he no longer wanted the TV set playing.  Frank had always wanted the TV on constantly.  Now it disturbed him.  This was my cue that he no longer needed or desired distractions.
  4. I’d been critical of the nursing care staff who would not get him up each day.  However, when he came home, I realized how weak he was.  The first day, I got him up early.  He sat up for several hours.  It was clear that he was totally exhausted beyond anything I’d experienced from him.  The next day, I got him up.  Again, he sat up for several hours.  As I took off his feet props from his wheelchair, I turned to put them out-of-the-way.  When I pivoted back, he had slipped and was falling out of his chair.  I realized how weak he was.  This was his last day to get up.
  5. I realized that his great strength could only keep him alive for so long.  I felt that he would continue to live for many more years because he was the strongest person I’d ever met.  However, operations, pain and bone cancer had stolen his ability to fight.
  6. I learned that I must be firm with his support staff, especially the doctors and nurses.  I had assumed that they would keep me informed.  Yet, when I was told that my husband had bone cancer, this information had been kept from me for several months.  Additionally, I had not been told that he was in the dying process.  When I realized his condition, I made an appointment with the nurse and told her that I could take any information given to me.  I would not tolerate not being told my husband’s status.  From that time, everyone was aware that I needed to be informed.  However, I had to be emphatic about my need to know.

I am extremely grateful for the lesson I’ve learned from the disability community and the heroic family members who have walked “through the valley of death” for years.  Again, they have taught me more than I could ever teach them.

This is a post that I shared two years ago.  Because the question is often Googled, I thought this could be a good time to review it.

Yesterday I received a phone call from an adult day program.  A family had called the workshop inquiring how they would tell their sibling who is mentally challenged that their mother had died.  When I realized that the developmentally disabled person was a member, I called the family.  We had a short talk regarding this dilemma.  Later in the day, on the Google search menu, there was the question again.  “How to explain a parent’s death to a mentally challenged person?”

Because several times I’ve been asked this question and it was come up about a dozen times in Google searches, I thought it would be a good thing to attempt to explain.  Of course, every family is different and you will need to use your own good judgment.  What I tell you may not be right for you and your situation.

I am not a grief counselor and I don’t claim to be.  However, in the years I’ve worked with this population, I’ve seen some things that seem to work and some things that only prolong the sorrow.  There are several suggestions that I’ve heard that I believe are not the correct way to handle the situation.  Perhaps the most egregious way would be to ignore the event or remove the mentally challenged person from the home during this grieving time without allowing them to grieve also.

Many years ago, Shiela’s mother died.  She had been in the hospital for months.  The entire family came for her last hours.  A well-meaning friend told the siblings and father, “Don’t tell Shiela.  She will never know.  Let someone else keep her during the funeral.  Don’t upset her by letting her know what is happening.”

The day of the funeral I received a call for the workshop and I was asked to visit Shiela.  She was sitting in the corner by herself.  I went up to her and found her crying.  I pulled up a chair next to hers.  Understanding the family’s wishes, I knew I had to tread carefully and watch what I said, “What’s wrong?” I asked.

“My mother died.  The whole family is at my house and I’m not there,” she told me.  “I want to be with my family.”

For about an hour, we walked and talked together.  Not wanting to break the confidence of the family, I said nothing, only listened.  Though a lower functioning individual, Shiela knew and understood exactly what was happening.  She was confused and hurt that her family had excluded her from the sorrow of her mother’s death and the comforting joy of being with the whole family during this time of hurt and pain.  My coming and allowing her to share her sorrow brought a great deal of release for her.

Another suggestion given to a family was:  Take George to the funeral home.  Show him his mother and tell him that she is sleeping and she won’t ever wake up.  In my opinion, this could be a traumatic thing to tell any person.  Can you imagine how frightening that would be to a person with a limited understanding?  He or she would never want to go to sleep again for fear that s/he may not ever wake up.

Again, I’m not an expert in these matters.  However, I believe that a simple and direct explanation of what has happened could be the most beneficial and healing method.  If the mother was a Christian, you could say something like this, “Sally, you know your mother was very sick.  Last night at 10:30pm, she died. (Giving a date and time can give Sally some concrete evidence to mark the event.)  The Lord always knows what is best for all of us and He knew it was the right time for her to die.

“You will be very sad for a long time and that is all right.  But remember we aren’t to be sad for your mother.  She is in heaven with Jesus.  She is well and not hurting any more.  She is happy and she wants you to be happy too.  Yes, you are going to miss her.”

Then remind Sally of some silly thing that her mother did.  Encourage her to smile and even laugh.  This will give Sally permission to find joyful expressions during this sad time.  This will say to her, “We are all sad but we can still laugh and be happy.”

Don’t stop an appropriate amount of tears.  Crying can be the best thing Sally can do at this time.  Tears may not come immediately.  You may need to give Sally permission to cry.  “It’s all right for you to cry.  I’ve been crying because I’m sad.  You will cry too.  That is all right.  Your mother and Jesus will understand that you are hurting and lonely without her.”

Keep the words and explanation simple and clear.  If there are questions, answer them simply and clearly.  Remember she or he may intuitively understand more than you realize.  Give him or her the opportunity to freely express emotion and ask questions that are meaningful to him/her.

Dealing with grief is always a tricky situation.  Remember:

  1. Some families are expressive.
  2. Others find help in remaining strong and stoic.
  3. Your situation will be unique.
  4. The reaction of your family member will also be unique and very personal.
  5. Pray that God will give you wisdom.
  6. Keep your words and explanation simple.
  7. Answer questions.
  8. Allow him or her to cry.
  9. Introduce an opportunity to laugh with the person about some personal memory that will bring  joy.

Nancy’s voice was sorrowful, “Linda, can we have lunch?  I just want to be sure things are all right with you.”  She is a friend and a fellow pastor.  Nancy, also a recent widow, has called me several times since my husband died just to be sure that I’m all right.

We sat for an hour, eating, laughing and crying about our husbands and our present lives.  Over the months of sorrow and grief, I’ve been upheld and supported by many people who have shown exceptional love.  Here are some things that I’ve learned about supporting others and thereby winning friends from the men and women who have loved me through my present situation.

1.  My friends listen.

2.  Again and again, folks allow me to talk openly about my sorrow without interrupting me.

3.  People aren’t afraid to laugh with a me about situations and events that have happened during the last year.

4.  My friends allow me to cry freely without embarrassment.

5.  They take time for me, even though their lives are hurried and busy.

6.  When appropriate, my friends–especially the men–don’t let me drone on and on about my past and present situations.

7.  People haven’t been afraid to give me advice regarding important financial decisions that I’ve had to make.

8.  Giving added support, there have been people who have been proactive about decisions that I’ve been hesitant to make.  Their support has even extended from advice to action when needed.

9.  Close friends have not been afraid to advise me to slow down when they’ve seen me rushing into life-changing decisions.

10. I’ve been assured of the prayers of my friends.  They’ve not been afraid to stop in the middle of a conversation, even in public, to pray for me.  They often say, “I’m praying.”  This gives me great encouragement.

People within the mentally challenged community and their families walk through sorrowful  health and death events.  These are some ways that you may be of help to them.  What are other things that you’ve experienced that also help?

I walked away from my conversation with John’s only remaining family, a sister and brother-in-law, wishing I had known him better when he was alive.  But that always happens when I interview a family before attempting to conduct a memorial service or funeral.

John died on a Wednesday.  He was a member of The Special Gathering, a ministry within the mentally challenged community.  An important part of our Melbourne program and a member of the choir, we were often cloistered in the van traveling with the rest of the singers.

Therefore, I probably knew him as well as anyone did, other than his family.  But I realized as I got into my car and sat for a few moments reflecting on John’s life that there was so much more to know about him.  These were important things about his past that had shaped him into the man I admired.

There were vital details that I didn’t know or understand.  John was 84 when he died.  Which means that he was about 74 when I met him.  He was a tall and thin man who always stood straight, proud and erect.  He smiled often but you had to savor his words because he didn’t often share his thoughts with anyone.

John was born and raised on the farm.  All his life, he knew hard, hard work.  Therefore, he was stronger than most men half his age.  He loved to work; but, like many people, he was hesitant to push himself into an unknown situation, concerned that he might make a mistake.

For 65 years, John was a devoted train watcher.  The trains carried coal from the mines of Pennsylvania, running directly through the middle of the farm.  Most of his life, his partner in the fields was his father.  Unwavering, the pair sweated through the heat of the day and pouring rain.   But the men would leave their plow and hoe and straighten up as soon as the rambling or whistle could be heard.  They would take off their hat, pull out a handkerchief and wipe the sweat from their face and neck.  The duo watched every train as the cars ambled or raced through the middle of their crops.

“If Mother caught them, she would scold unmercifully,” his sister reported, but her temper couldn’t keep them from stopping when the next trains rambled past.

After John severely broke his leg at the age of 65, his sister and her husband brought him to Florida.  He lived with them for the next 15 years.  He continued to work, helping with the household chores.  He went to Easter Seals at the Alzheimer’s section.  Though he had not one bit of Alzheimer’s, he delighted in helping to push the wheelchairs of the other more frail members of the troop.

While we don’t ever admit it, there is something wonderful about death, that final passage of life.  Because people stop to remember.  We brace our hoe under their armpit and take off their hats.  Slowly, we wipe our brows and listen and embrace the rambling noise of memories.  And for a brief moment in time, we allow ourselves to rejoice in the past.

Jesus said at the last supper, “Do this to remember me.”  Memory is a vital part of the Judeo-Christian heritage.  The passover is a ritual of remembering.  But somehow we refuse to do it.  Our lives are wrapped tightly in the present and future.  Even our older generations, don’t take the time to remember…or we don’t take the time to listen.

But death abruptly unwraps the cocoons of our present and our future and we come to a screeching halt as the noise of the past slaps us in the face.  The only thing John’s family, friends and I have left are our memories of him.  His quick smile.  The way he said, “I know.”  Consequently, for a few days, we’ll savor and nourish and treasure those memories.  We will remember.

What are the treasured memories you have of your members?  What member would you miss the most?  What memories are you impressing on your family and members?

This is an email I received from Bev Linder today.  I wanted to share this with you.  Brad had many physical disabilities and died a few years ago.

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Dear friends,
The following is one of the blogs on my website.  Many of you who receive this mailing may not be aware of my blog.  To view more blogs click here.
When I was home schooling Brad, I would sometimes go out of the house for a while and leave him doing his schoolwork.  He would invariably call me, and about 95% of the time, his first words were, “When will you be home, Mom?”  My answer varied–sometimes I had a bunch to do yet; sometimes, I had only one or two more errands; and some days I would say, “Guess what, Brad.  I’m driving into our driveway right now and should be walking through the door any minute!” Now Brad is in heaven…

 

…and while I was out today, I looked at my cell phone and I could almost hear him saying, “When will you be home, Mom?”  It struck me that Brad really is still waiting for me to come home, only now it is our eternal Home.  I believe with all my heart that our loved ones in heaven still love us and look forward to being with us just as much as we look forward to being with them.
The difference now is that I don’t know when I will be Home.  I may still have much to do on this earth; or maybe I only have a few things that God wants me to accomplish; or maybe I am just about to walk through that door!
And just like when I would leave Brad home when I did my errands, although he is looking forward to seeing me and others that he loves, he is not sitting around idly. When he was here, he was busy doing his school work.  Now, he is busy in heaven.  2 Corinthians 5:9 says, “Therefore we have as our ambition whether at home or absent (whether in heaven or still on earth) to be pleasing to Him.”  I have the same ambition as my son (and other loved ones in heaven)–to be pleasing to Christ in my service.
And I’ll be Home, soon Brad…not sure how soon, but soon!
Bev Linder
contact me at:
This is a description of a good friend’s adventure in December 2010.  Dave is the executive director Gillespie Services which provides housing and day services for people within the intellectually disabled community.  A Special Gathering volunteer, he  is a quiet man, not prone to exaggeration, extremes or drama.

Even though it’s been almost a year since it happened, each time he tells his experience, he cries.  Usually, people who hear his story cry.  In his simple telling, there is  powerful evidence of God’s mercy and grace.

I had chest pains and was so dizzy I could not lift my head. My wife called an ambulance and I was taken to our local hospital in Melbourne, Florida.
Around 2AM the next morning my journey to heaven began.  I went through a tunnel filled with  gorgeous flowers. The colors and smell were nothing I had ever seen or smelled.  I went through light on the other side.
I saw a white fence that went on for as far as I could see; and I saw an angel who was just a little bigger than I am.  She had  wings and she was playing a harp.   She played the harp during my entire visit to heaven.
On the other side of the fence I could see a road made of gold and Jesus standing at the gate. The road was firm and solid but so clear that I could see the clouds underneath it.
When I saw Jesus, I thought, Wow! It is really him.  He looks exactly like his pictures, except his eyes are a bright sky-blue.  He wore a white robe with gold fringe.
Next, I saw four of my family members. They were dressed in white.  I saw my mother, step-father (who raised me), grandmother (my mother’s mother) and my Uncle Mike. (My mother raised him starting at ten years old when my grandmother died of a heart attack.  He was like my brother.)  They all looked between 21 and 34 years of age.
I talked with my mother first. I asked her if she was still in pain. She had died of cancer. She said, “No.” She asked me how my brothers and sister are doing.
I talked to my step-dad and brought up that I was disappointed that he never got around to legally adopting me.  That had been his plan, but inadequate funding prevented him from being able to carry out the plan. He was the Chief of Police of Stow, Ohio.  He died of a heart attack when I was 15 years old.  He said that he was also very sorry that he was unable to get that done for me.
Next I talked with my Uncle Mike.  He also died of a heart attack.  He suffered with heart pain before his death and refused to seek help.  I asked him why he didn’t go to the doctor and he said that he didn’t want anyone to cut him open. I told him that I had open heart surgery and that it isn’t that bad and that he could be alive today if he had sought help. He again stated that he didn’t want anyone to cut him open and he was happy in heaven.
The last family member I talked to was my grandmother.  I thanked her for helping me with my speech when I was in elementary school.  At that time, I had a speech impediment.  She worked with me on some of the letters that gave me trouble.  She told me that was a great time for her being with me. Grandmother was shocked that I remembered this.  My grandmother looked younger than I ever remember seeing her.
After I talked with each one of my family present, Jesus talked to me. He said I could enter the gate if I wanted. However, he said my job on earth was not complete and he wanted me to return.  ”But,” Jesus said to me, “it is your choice.”  He would let me enter the gate if I wanted.  He told me I had a wonderful family. I told Jesus I would return to earth.  Jesus said, “I’m glad you made this choice.”
When I returned, I did not go through the tunnel. I could see my body sitting up in my hospital bed.  I remember thinking, “How am I sitting up? I wasn’t able to sit up earlier.”  You see, I was so dizzy when I came to the hospital, I could not lift my head. I remember floating through the air and returning into my body.
I wanted to call my best friend, Linda, and my wife, Pam, to tell them. I looked at the clock and it was 3:00AM. Jesus spoke to my heart and said, “You can wait until morning to tell the story. You will remember it.”
I waited until morning and called my wife and asked her and my friend to come to the hospital as I just returned from heaven and wanted to tell them my story.
My friend Linda said she believed I died because I expelled my body fluids and the nurse had to clean me up. My trip seemed to take about 15 to 20 minutes.  Yet, I was connected to heart monitors.  I was never pronounced dead, nor did any of the heart monitors show any signs of death.  I guess it is true that a day is like a thousand years and vice versa to God.  He can do all this work in the twinkle of an eye.

Read more: http://blog.beliefnet.com/simplelife/#ixzz1bszo4Nv6

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