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From the Spring 2008 issue of For Those Who Give and Grieve.

The pain of losing a loved one can be made worse if family, friends or co-workers begin to treat you differently. Many people aren’t sure how to act around someone who is grieving and may be uncomfortable.

Did you notice any changes in the behavior of people you know, and, if so, did you try to help them understand how you wanted to be treated?

Did anyone respond in ways that were particularly helpful or compassionate? What did you want people to do or say?

I lost my 27 years old son on april 2008. I want Just People remember good memoty of him

Posted by: farideh shahabi

I am a donor parent. We donated our son's organs in 1992.
A coworker's daughter died recently and I sent the following to our coworkers:

LaNita is now a member of my club, the "bereaved parents club". The dues are the death of your child, intense pain and a broken heart. Once you join, you can never leave. You just have to learn to endure. As you do, you discover gifts, but that takes a while.

Recommendations for talking to bereaved parents:

Talk to them, do not avoid them. Being a bereaved parent is not a contagious disease.

Be open and willing to let them cry. Be willing to cry, yourself.

Mention their child's name when talking to them. Bereaved parents need to hear their child's name, often.
All too often, people avoid mentioning the child's name and the death. To the bereaved parent, it is an ignoring of the pain. It is an ignoring of the tragedy. When people do the avoidance, they act as if the death never occurred and as if the child never existed. That hurts and intensifies the grief.

Do Not , I repeat, Do Not say that you understand, You can't, even if your own child died. You can't understand what any bereaved parent is going through. It is the most painful and weirdest experience I have ever gone through. And I am still going through it. Remember? "You can join, but you can never leave." It gets easier with time, we learn to live with it. And we eventually see the gifts and blessing associated with this experience. But that takes time and the help of those who love you.
However, if you are a bereaved parent, let that be known. Bereaved parents need to connect with other bereaved parents.

Do Not say things like, "Well, at least you still have two other kids." Saying things like that hurts. It is like saying to a person who lost his arms, "Well, at least you have two other limbs." To say that would be cruel.

Do not even say things like, "Well, at least now she is in a better place." She is NOT! The best place is at home, alive and well. No child should die before her parents. Therefore, there is no better place. A child going to "heaven" creates a hell for the parents.

Do not mention that your dog or cat died, as a way to relate. Do not try to relate with the death of a loved one, unless that loved one is your own child. In winter of 1985/86 two of my favorite uncles, my grandmother and my mother died that winter. Their deaths were nothing compared to my son's death. The intensity of a child's death overshadows all other deaths.

Crying is good. Do not be afraid to see the bereaved parent cry. Honor her by allowing her to cry and by crying with her.

People state that they don't know what to say to a bereaved parent. If you knew the child, you can tell her what you remember about the child. If you didn't know the child, you can ask her to tell about her child, and be willing to cry with the bereaved parent. You can ask her how she is feeling today. Distract her from her grief, AFTER you have acknowledged it. You can distract her by talking about anything "normal". Tell her a joke. Talk about work. You can talk about anything.

This is a lesson in compassion.

If you have any questions, please don't hesitate to call me or reply to this message.

Mushroom Montoya

Posted by: Mushroom Montoya

It is hard to have a true friend in this world but when we do we expect to keep them.

It seems that when our daughter died the people I thought were my best friends dissapeared and new friends came out of no where, so essentially it was a bitter-sweet experience.

I always voiced how I felt and wanted to be treated and suspect that some were scared off by my grief while new people came into my life with a strong constitution showing me more aspects of humanity than I had ever known before.

The best help was from people who walked the walk with me, not just talked the talk.. and the ones who could in their silence show their compassion and sorrow, to our family and to me.

Sometimes there is nothing that can be "said" but it certianly helped when others reminded me of my great Faith in God and the promise of Eternity, not just this life as we know it.

I liked when people showed their compassion through deeds and actions, and invited me to partake in things to help me escape the grief for awhile.

To be reminded I would see my Daughter again and that currently she is living on through others because she was an organ and cornea donor helped tremendously.

Posted by: CindyJo Greever

I lost my oldest daughter in a car wreck that almost took my middle daughter too...People at first were helpful there for me to talk lean on.the thing that got me was when they would say you are strong you will get over this in no there a time limit?It has been 7yr. and the pain is still there it has just gotten to where i can live with it.and the same people are like see told you in no time you would be better.

Posted by: patsy childers

People I had known for years began to avoid me. Places I had looked for comfort and reassurance, now, was absent in my time of need. I discovered the strength of my husband and resiliance of my children kept me going. I didn't continue to seek people out or beg for comfort. I realized in the end whom was there for me. My immediate family and God. I miss you dad, more than you will ever know.

Posted by: Betsey A. Sugg

when my son died, i thought i was going to die.But all my friends and family was there for me. Thw only thing was, when someone found out we donated his organs. they said i don't think i could do response was always, i know how i couldn't. so many people don't understand about organ donation.and that is really a shame.

Posted by: Katherine Kelley

when my son died, i thought i was going to die.But all my friends and family was there for me. Thw only thing was, when someone found out we donated his organs. they said i don't think i could do response was always, i know how i couldn't. so many people don't understand about organ donation.and that is really a shame.

Posted by: Katherine Kelley

People didn't want me to cry. I have explained over the past 15 years that my tears are a way of remembering. My husband and my surviving children don't know what to do when I cry. I've explained that sometimes the longing and the missing are so great that I just need to let them out and crying is one way to do this. My crying has gone from the heart wrenching sobbing to a more cleansing type. I still think of Stephen, miss him, wonder what type of man he would be, what type of career he would have chosen, etc. I still have this conversation today with friends.

I shop for Christmas all year long so when Stephen died in April I already had items for him for Christmas. I mentioned this in a conversation with a friend and she immediately said to me that she would take care of them. She took the items and was able to return some to stores for refunds. What was left she donated to an agency that provides toys for children at Christmas. Every year since then I have asked my family to buy a gift for a child in Stephen's honor and spend what they would have spent if he was still with us. We began by selecting a child that was his age until he would have been 16 and then we started over from 1.

Go by the post office and pick up stamps. Offer to address envelopes so when they feel like writing notes that's all they have to do.

Make a run to the store for supplies that seem to disappear when there are extra people around--toilet paper, paper towels, napkins, cups, plates, dish detergent, laundry detergent.

Offer to come in to vacuum or hire a local service to spend the day cleaning the house (because of cost this might be a group project.

Stock the freezer with ready to bake or just heat foods. Stop by with dinner so no one has to think, prepare, cook, or clean.

Another suggestion I have for those who "want to do something," is to listen. Take your friend or family member out for ice cream or coffee, go for a walk, etc. Just time alone where this person can just let go. Don't be afraid to share a story about the deceased. Our greatest fear is that we will be the only one who remembers our loved one.

I was so touched by my son's classmates. He died when they were in 6th grade in 1992. Our family provided flowers for their high school graduation ceremony in 1998 in his memory but of course the kids didn't know this. The president of the class had her fellow classmates leave the seat where he would have been seated empty and she mentioned that he was there with them in her speech.

Don't forget. There will be many people around for the wake and the funeral and then people just disappear. They don't want to make you sad or get you upset. They don't mention the person's name or share memories or stories when this is what we want to hear. Yes, there will probably be tears but those come from the warmth in our heart. After some time has passed bring out those pictures you come across, return that book that was shared, all of those reminders are treasured signs that our loved ones were important, not just to us but to others as well.

Posted by: Jane

Everyone was so kind for the first couple of months. Saying and doing all the right things but on the first year anniversery NO one called. I later ask some of my friend Why?and the response was "I didn't know what to do" It was proably the longest day Of my life.

Posted by: Gen Riffe

People would try to avoid me if they saw me. I think because they did not know what to say. I just wanted them to acknowledge me not avoid me.
It would of been nice to get hugged. Unfortunately you cannot make individuals understand the loss of a child. No one knows until they are in this situation.

Posted by: Barbara Sayer

For myself, I noticed a huge support the weeks following my son's death. However, after a few months back to work I felt like people forgot that I was grieving. I was experiencing things I'd never wanted to know. While friends and co-workers were planning the weekend I was at the cemetery, while they were taking vacation, I was planning my son's headstone. While the holiday's were approaching, I was finding out all the gifts of life that my son's donation had given. Who do you share this with? I felt alone. I have one girlfriend who gave me her time and just listened, never expecting anything from me, or pressuring me to go out, return her call, she simply has loved me and told me from the beginning it was ok to cry to her. Not to apologize for anything. Whereas, other friends pressured me to get back to my old self, going out to lunch, putting the guilt trip on me for not calling or going out to dinner. Stacie let me be myself and listened. Sometimes you have a good day things are going fine and then you get "blind sided" by that favorite song, a memory, someone who looks like your missing loved one and the day can go from good to sad. That's when co-workers and friends forget that we're still not 100%. I have not said to co-workers or friends what I need from them or that they are pressuring me. I'm not sure what I need at times. Through the support from companionate friends I have talked to family and expressed what I needed or wanted from them or to help me get through the holidays. I also received information on what they needed from me. That was helpful.
I also met someone from the Family Donor dinner that was held in Montana who is going through the same thing and I can talk to her about the darker feelings I may be going through that would be to much for a regular friend who doesn't know how a death of a child feels.
Thank you,
Kris Miller,
Butte, Mt.

Posted by: Kris Miller

With some people, it was as if the death of our son was a disease they could catch if they came too close. I think death reminds all of us that we are mortals, but losing a child is different. It's unthinkable, obscene, against the natural order. If WE could lose a child, then THEY could too. For others, I think they just didn't know what to say and didn't want to say the wrong thing (which many people did...Time heals all wounds, you'll get over it, etc.) and so said nothing. The two most comforting things I heard was "I'm so sorry" and, from a mother whose two sons had died, "It won't get any better." I needed to know that I wouldn't wake up one morning, years later, and not feel my son's absence. We get better at "it" but that's different. Personally, I was the most offended by people who seemed to think that ignoring the whole thing (and ignoring our son) was the way to go...eating dinner with old friends who never even spoke his name. I LOVE to talk about my son Adam who lived 16 wonderful years and died 7 years ago. People don't need to think that it will be too painful - we've already experienced the most painful thing imaginable; how could reliving happy memories add to that pain?

Posted by: Ellen Gillette

This is a correction to my first response. I said I know what I would want people to do and that is go through my family . . . I meant to say would I WOULD NOT want.

Posted by: Alison Mohn

I noticed that people tended to avoid me, I think because they didn't know what to say. It's kind of hard (at least for me) to bring up the issue of how you want to be treated. I wouldn't bring it up unless someone specifically asked. Some people responded by continuing to ask how I was and NOT avoid talking about my son, Ryan. By continuing to talk about him and asking different questions, it made me feel that he wasn't forgotten. I know what I would want people to do and that is to go through other family members to ask how I am. I have found that many people have done that where I am concerned. Ask me how I am . . . not my family because they don't know. Only I can tell you how I feel.

Posted by: Alison Mohn

So many people don't know how to respond to you! I really was moved by something a lady that went to church with me at the time of my son's death, " she said take one day at a time, and know that losing a child will probably take four years for you to begin to heal" I remembered , she had also lost a son ! She was so right. All we really want is for our friends and family to be there to listen if we need to talk. Believe me talking is the best medicine.

Posted by: chris clement

#1...When my husband died suddenly at 54 years old, my adult children, who had always looked to us for advice/advice, seemed to act like I was unable to make ANY decisions for myself. I'll admit that for the 1st few weeks I was grateful to have someone step up but it soon became an annoyance. I finally had to sit down with them and tell them I might be sad, depressed and scared at times but I was working through the grief and getting my bearings back. I let them know that I might be asking their opinions more often and that I appreciated their input BUT that I would not always be doing what they thought was the right thing to do. They all seemed to be ok with that. They have continued to be supportive but didn't try to take over and do for me what I could do for myself. Because they heard me, I have been able to gradually regain my confidence and continue on my journey of healing.
#2 What I found helpful was the people who simply said "I am so sorry" and I am thinking of you" (or praying for you. And those who provided a touch, a hug or an arm around my shoulder. All the promises that some people made of lunch,we'll have you over for dinner, we'll get together soon, etc. are hurtful if not followed through.
I especially appreciate those who referred to my husband by name or spoke of what he meant to them. I still remember those types of conversations.

Posted by: Judi Worley

I definitely experienced changes in behavior of those around me, including my own family members. At first everyone is very sympathetic then there was very little conversation. At times, conversations would stop when I walked in a room. Telephone calls stopped, I no longer fit in. I found the best way to have them feel more comfortable was for me to talk about my son in their presence. I let them know that it was ok to talk about Brian. He may no longer be on this earth with me but he is still my son. I will always have 2 sons and will always talk about him & his accomplishments, but most of all about the gifts that he gave to the nine families whose loved ones were on the waiting list. My friends and families now know that they can speak freely about their children just as I talk about mine. There are some people who will never be comfortable around me & I can accept that & understand it. All I ever wanted was for my friends & family to treat me the same way they always have. Over time it has gotten better. As long as I have my core group of friends I can handle any emotional wave that comes my way.

Posted by: Susan Seidel

Most people, not knowing how to deal with me afer I lost my daughter, treated me very differently. It was easier to avoid me than for someone to try to reach out to me. The best thing that happened to me was one co-worker, Nancy, was the only one who acted the same way towards me as she always had. We were close friends and she let our friendship play out the same as before the accident. I did not know how to ask for help until one friend gave me a wonderful book to guide me through the grief process. Many people showed compassion, giving hugs, sharing tears and doing many things for me that I couldn't face at the time. I will never forget the love I felt from all these family members and friends.

Posted by: Billie Lomonaco

I was amazed at the responses of those I considered so close to me. They're collective respose seemed to be get over it,forget it and move on. That was the most painful time; needing those family and friends and finding them "gone". Only a few have accepted my grief and "allowed" me the time to grieve. The absolute best thing anyone can do is to give hugs and listen. Those people are so few and far between. But they are the best!

Posted by: Sharron O'Buckley

When my son died too soon too young in an accident I was devestated. After the funeral and everything was over I just wanted to be left alone. I didn't want to see anyone or talk to anyone. I needed time to just be alone and to try to come to grips with the whole situation. I needed time to grieve and to try and make some sense out of what had happened. I told my friends this. I told them when I was ready to get back to the real world I would let them know. They honored my request. I will always be greatful for what they did for me. They were there when I really needed them.

Posted by: Anna Parham

Question # 1
I found that people looked at you with a new feeling of uneasiness of not knowing quite how to look at you or not quite knowing what to say. They wanted so much to take away the grief that we were expereincing. May mentioned that the could not express in words how they felt.That sorry was not enough. As we have shared and continue to share this experence with others we have made it a habit to dwell on the positive things that this experince has been. The gift that our son gave to his recipients has helped to soften the grief. We have been very open with others and share that experience with them. As we have been open to talk to them about it they have felt more open to share their empathy with us.
Our son was involved in a auto pedestrian accident. He was hit by a car.
We have had the great experience of getting to know the person who was driving the car. His family even though it was hard came and shared their sorrow of this accident and we have both been open to the sorrow and hopefully ease the guilt that this wonderful man has felt for this accident. This has helped us and others know that tragedy happens. But it is important to not let it destroy two familes lives with bitterness.

Question # 2
Our son passed away just over two weeks before Christmas. Our neighbors purchased christmas ornaments that were presented to us to put on our tree. With them cards were also given. Written on them was the reason they had purchased or made that particular ornaments.
Also the neighbors gave a scrapbook with letters and pictures from their families with thoughts, memories of how our sonhad touched their lives. Also words of hope. We cherish these two gifts. Each year as we decorate the christmas tree we reread those thoughts. This has help to bond us to our neighbors and friends.

At work when I returned after the funeral. I was met with a heart attack.Let me explain. I work for a finincial institution. Each branch employees had written a note to our family written on a paper heart. My work area was filled with these paper hearts with words full of compassion and uplifiting thougts.
I want people to treat us like we are. We have changed as we look at the world a little different. We try to appreciate the family we have a bit deeper. We want other s to understand that sometimes things are very sad but that we need to to talk to us. It is okay to bring up the subject. Learn from it and know that we are in this together as friends, neighbors, and family and to be their when your life crumbles at bit. Pick us up, encourage us to move on, look for the good. Just know someone cares has made all the difference in our lives.

Posted by: Sheila Baxter

When my wife Valerie died suddenly four years ago at the age of 38.I thought that my world had come to an end. My friends were there for me in many ways, the only problem was that i needed some time to myself and i could'nt get it. They were at my house day and night not letting me be alone.I did enjoy the company but there were times that I just wanted to scream at them and tell them to get out of my house, I did'nt do it but I wanted to.Things were like this for about two months, then i noticed that they were starting to come around less and less,then they all stopped coming around. I called them why they stopped coming around. They all had the same answer,I didnt know what to say anymore.Since then I havent seen them at all,I dont know why but they just stopped calling and visiting me.The only change that I can see that came was that they all didnt know what to say anymore.I dont know if this will help anyone or not, but it made me feel better writing it. Thankyou for reading this and I hope that everyone who lost a family member has a happy and joyful life.

Posted by: Ken Raively

When my almost five year old daughter died suddenly in an auto accident 13 years ago, so many people wanted to be a blessing. Unfortunately, often the wrong thing is said or shared or acted upon.

To protect me, one person was certain that the newspaper was no where to be found the day following the accident. unfortunately, even when I was ready to look at it, it was gone...they must have destroyed it.

Saying the wrong thing: I know how you feel; I'm hurting too; not allowing me the freedom to share my hurts and pain along with my memories and joys of her life. Even now, not everyone is open to hearing about a child who has passed away - it makes them uncomfortable, as though it might be contagious. hmmmm.....

Sharing stories of your experience too soon after the death: YIKES! bad idea...because when the pain was so very fresh to me(days) i really didn't care that someone had had a miscarriage or lost a new born...i know it sounds harsh, but i didn't.

Pushing those who are grieving into your agenda or plan: out of kindness and concern some would try to urge you forward - get out, have some fun, let's move past this. When all i wanted to do is die myself, this was not helpful.

The most helpful experience was from a very wonderful woman - she was my daughter's best friend's mom. All she did was sit with me, help me with my housework and listen. What a blessing she was!

The other wonderful thing was from the mother of a boy who attended preschool with Danielle. She gave me a wonderful poem about being a parent and how God chooses us specifically for this task without promising how long we will have the job. it was a life changer for me.

all in all...i believe that we all mean well and care for those who are grieving, but we are limited to our own experience. we often say, do or share the wrong's part of it.

Posted by: Daphne Mayer

The loss of our only son was untimely and devasting. At 22 he had just begun to live. We received many cards, e-mails and much sympathy for the first month. The tragedy overwhelmed our lives and we didn't even know what we needed. One dear friend went beyond the 'card and a casserole' by coming to our house and doing what needed to be done; washing dishes, laundry and even cleaning the bathroom. She didn't ask where I kept extra toilet paper she just brought along a new package. So many that cared about us during the first month forgot about us quickly as thier lives returned to normal. On his birthday, 5 people called or wrote, by the 1 year anniversary of the accident, 2 people remembered our pain. On his next birthday, no one called or wrote. It's unfortunate how many people expected us to be 'over it' by now. The ones who truly care are the ones that listen to our endless thoughts, stories, and pain through the journey of grief. They care enough to know we will never 'get over it' and need their sholders as we learn to live with our loss, and find a new normal.

Posted by: Peggy Matthews

After the first year they seemed to be less concerned with my feeling mainly because they were scared to ask me how I was feeling. It seemed that I was able to bridge this area of uncomfortableness by bringing up memories of my husband Louis.I would just talk about Louis when I was around friends and family. I knew that this was uncomfortable to everyone that was in our life before his death.

Posted by: Felacita King

The most wonderful thing someone can do for a person who is grieving is to mention the deceased name. Those people I knew who continued to talk about my son and call him by name meant more to me than anything. No one wants to believe that the person you have lost is now being forgotten by those who knew him.
Remembrances, such as a note, card or little gift, were thoughtful and caring little reminders that I was not along in my pain and grief.
I still receive Mother's Day cards, four years later, from those who knew and loved my son.
Also, not avoiding the grieving person in the store or anywhere out in public would be another important thing to remember. Don't make grieving people feel like they are invisible!!!

Posted by: stephanie willis

When acquaintences would be overly solicitous. I would say: "Whenever I feel like crying, I can hear Dave saying, "What are you crying about?! Count your blessings. You don't have to cook for me anymore. You don't have to be home at 5 on the dot, etc." And I would say this with a big smile, because that's the way we were. Some people were horrified, but most were relieved that I have a sense of humor along with my grief.

Posted by: Mrs Dee

ADD TO MY PREVIOUS.......Please.
One added item I mention in my talks is "Yes, you will see tears." If seeing a 60 year old cry bothers you..."tough!"
Vietnam taught me how to cry - losing a son has made me an expert at it. - S

Posted by: Steve Gardner

I agree, relatives, friends and acquaintances will not know how to approach you or what to say when talking to a Donor Family.

One of the most aggravating statements is "I know what you are feeling." Bull! Everyone grieves differently.

When giving talks to Medical folks or students I mention this subject. My recommendation to these folks is give the grieving person a "Hug" and an "I'm sorry." Realistically nothing else can or should be done.

Posted by: Steve Gardner

Two years ago, I lost my only child, my daughter Kim. She was 21 and her death was completely unexpected and a total shock. I feel so lucky to have family, friends and coworkers who have always been there to support me. Since the beginning, they have not been afraid to talk to me about Kim, sharing their memories of her and their sorrow at losing her. I find that I cry less frequently now, and I'm able to smile more as we remember her and the joy she took in living her life. I realize that I am very lucky to have so many caring people in my life.

Posted by: Denise Daley

After the passing of my only son, family and friends became noticably uncomfortable in my presense. Avoidance became the easier choice and friendships were strained. Grieving does not play by rules. Griving has no consistancy or "understanding". Grief rolls over your soul like a violent raging storm, unleasing all it's fury. I am grateful that a few friends became aware of those "approaching" storms, and instead of avoiding me, they patiently waited for the clearing, and for me to crawl to shore. They never passed judgement - had no expectations, just a warm blanket of love and compassion. They have become my "herd", walking each sorrowful step with me in silence and love.

Posted by: Patricia Nelson

Looking back now, 5+ years after we lost our 32 year old son suddenly and totally unexpectedly to complications of Diabetes, after I returned to work, several weeks later, I found that my co-workers, whom I had worked with for 10+ years to not want to talk at all. I see now that they not only did not know what to say but they were especially afraid they would make me cry which I did for many days, weeks and months. The worse part of it was nobody wanted to even say Chad's name and I needed to talk about him. I have a cousin that had lost her 18 year old son two years before we lost Chad and we have talked about the same thing. She said this year that it was nice to hear her sister-in-law finally say Brandon's name. My family was in so much shock that we didn't want other people to understand - we just wanted people to acknowledge that even though they didn't know what we were going through that they did care. Our family has changed so much since Chad died and we have changed the way we celebrate holidays and to this day our families still don't have compassion for how we've changed. We often talk about how life goes on but we have figured out that we are now in our "After Chad Life" and our priorities have changed. Our lives were changed forever when we lost Chad. I believe my family (husband, son, daughter-in-law and grand children)have become closer and more compassionate to people that have lost a loved one. We are not afraid to walk up to someone that is grieving and tell them that we know what they are going through and to offer our help, especially to let them know if they need to talk - we are there.

Posted by: Marcia Davenport