death and dying


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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