The Wall of Awkwardness, Pressure and Stigma That Surrounds Grief

by Amy L. Silva Rigtrup


On this week's episode of The Silva Lining, I was joined by one of my favorite guests on the topic of grief, Deanna Upchurch, Grief and Volunteer Programs Specialist at Hope Hospice & Palliative Care Rhode Island, formerly known as Home & Hospice Care Of Rhode Island. Along with an exceptionally trained and compassionate team of grief counselors and volunteer facilitators, Deanna and Hope Hospice will be expanding their areas of support between Providence, RI and Southeastern MA. To find out more about Hope Hospice and the multiple support groups they already offer please visit their website and CLICK HERE for the support groups schedule.

As a person who has experienced loss, how many times have you:

  • Felt pressured to come up with ways that all of the countless people offering help/support can help you?
  • Felt like you couldn't say no to engaging in situations you may have not been comfortable with, but were told you should do?
  • Been told how you should or shouldn't be feeling or coping with your grief?
  • Found yourself in a conversation where acknowledgement of your deceased love one is specifically avoided?
  • Felt that you've needed support but didn't know who to call or what to say, so didn't call anyone at all?

As a person supporting someone that has experienced a loss, how many times have you:

  • Not felt you had the right words to express your sympathy, love, willingness to support and instead chose to say something cliche, or avoided contact altogether?
  • Have wanted or expressed offers of support at the funeral but were unsure if it was okay to reach out to the bereaved in the weeks/months that followed?
  • Wondered in social settings about mentioning the deceased around the bereaved, assuming bringing up the person would upset the bereaved - so chose not to?

All of these very relatable, well-intentioned and highly common societal elements exist because of a wall of awkwardness, pressure and stigma that surrounds grief. The only way to bring down this wall is through education and communication. The more our society is educated about grief, perceptions will expand, minds will open, expectations will be erased and this will all lead to better communication between the bereaved and support networks. That is how the wall will come down.

Grief is not black and white, formulaic or measurable. It is as unique and complex as the individuals we are, the relationships we have and the capacities of love we feel. There can be no room for judgement in grief. Just acknowledgement, respect, understanding, love and support.

CLICK HERE to listen to the podcast dated 3/31/16

Deanna and I had an extensive conversation on these topics, initially sparked by an interesting list that she came across on Facebook (author unknown):

The 5 types of people responding to a friend after a death. Which one are you?

The comforters - these beautiful people are warm and tender. They look into my eyes and see my tears, and they seem to know intuitively what I need. They can articulate how they feel, and recognize my never-ending pain, and sometimes they don't need to say anything at all because their body language is obvious. They hug and they squeeze my hand as required. They're not afraid of their emotions and tears, or of mine. They make it clear how much they care about me and how much they also miss my loved one. They are, unfortunately, so rare. 

The try hards - they have their heart in the right place, but they don't know what to say or how to be.  I totally understand because I don't know how to be either. They fumble and stumble with words, but their presence is noted and their love is felt.  

The fixers - these people are going to 'cure' my grief! They tell me that 'time will heal', to 'keep my chin up', to read this book, to go to church, to see another therapist, to be positive.....but have they ever lost anyone? Probably not. 

The drama addicts - these people were once friends, lost through the passage of time and moving cities etc. They came out of the woodwork as soon as they heard my loved one was in ICU. They emailed, sent texts and were wanting to know the details of my 'crisis', and how on earth I was coping. Then after the funeral, they disappeared again. 

The avoiders - they literally turn the other way at social gatherings, or in the shopping centre. They have absolutely no ability to communicate, although they did send a card or flowers at the start. And if by chance they do interact, there is no mention of what has happened. It's like my loved one never existed. These people are good to hang out with on days when you are trying to move forward and pretend it never happened yourself!

What I found really interesting about this list is that we can take on many of these different roles for people in our lives depending on the situation and relationships that we have. Also, I am already taking inventory of my support network and know who I tend to reach out to in certain situations. 

One answer I have for breaking down the wall is by embracing PERMISSION. Maybe the bereaved can give themselves permission to think about what they need and ask for it - especially when someone offers to help. Permission to say no when they feel like they are "expected" to say yes. Permission to express how they feel or don't feel. Permission to grieve the way they need to.

Dr. Alan Wolfelt, nationally known author, educator and grief counselor wrote this Mourner's Bill of Rights that you can read by clicking HERE

Supporters can give themselves permission too! Permission to announce, acknowledge, even offer the specific type of support that they are willing to provide. Permission to honestly say what they are feeling - even if it doesn't seem to be the "normal" things they should say. Permission to ask the bereaved about things they feel unsure or awkward about talking about. 

The good news is that there is hope. Support and resources about grief are more available and carry a broader perspective than ever before. The wall can come down. We can all help each other because the groundwork is in place. At the center of everything is love. All of the awkwardness, pressure and stigma on both sides of the wall stands on a foundation of love and good intentions. We just need to open our minds, communicate and move forward.

 

Upcoming Events:

A Community Conversation - Weaving A Tapestry; Tuesday, April 5th @ 7:00 PM at Blessed Trinity Church, 1340 Plymouth Ave., Fall River, MA 02721 coordinated by The Fall River Suicide Prevention Task Force and sponsored by The Fall River Herald News; all are welcome to attend this discussion about prevention, resources and supports for those impacted by suicide.

Tickets are still available for Havens Healing Hands Comedy Night Fundraiser. Please consider attending or donating to this worthy cause - 100% of proceeds helping provide Vitamin C IV Treatments to those with pediatric cancer. Anyone interested in donating items for the raffle, please message me. https://www.facebook.com/events/181381172236601/

The Silva Lining would like to thank our wonderful sponsor,

St. Anthony of Padua Credit Union - We are proud to be sponsored by such an incredible bank, that in an age of conglomerate banks treating people like numbers, maintains a relationship with its members based on trust, friendly service and loyalty. With competitive rates for savings accounts and various loans, St. Anthony of Padua can handle all of your financial needs. Convenient online banking and more information at www.stanthonyofpaduafcu.com


Surviving Suicide: A Veteran's Story

by Amy L. Silva Rigtrup


I started this week's show by reading this excerpt from Wendy Garf-Lipp's Guest Opinion piece in The Fall River Herald News:

"I think that some part of me really knows that suicide is a major issue in our country. And I think that some part of me really knows that the numbers in Southeastern Massachusetts are quite high. I also think that some part of me knows that suicide affects teens, and men, and elders and LGBTQ+ folk and veterans and all segments of the community. And, I think that some part of me really knows that unless the person was famous, we don’t really think about it. I think that some part of me really knows that friends and relatives don’t want to talk about this subject, yet suicide is the 12th leading cause of deaths in Massachusetts overall."

This piece so poignantly sums up the imperative need for more conversations, education, awareness and preventative support about suicide. I wholeheartedly agree with Wendy, that suicide is only really talked about when it is somebody famous. In recent years, there have been many celebrity suicides that have been massively highlighted in all forms of media. These have sparked great conversations about the realities of depression, anxiety and the seriousness of mental issues. These vast conversations and speculations are all missing one thing - the story. It is not often that we get to hear from the people that attempted suicide and live to share their story. The tangled web that led up to it, what stopped them or saved them and the journey forward, with hills and valleys, strength and weakness, towards hope, recovery and a new perspective.

My guest this week does just that. A Veteran of our Armed Forces, he shares his story about his deployment in Iraq, where he experienced immense stress, anxiety, depression and ultimately attempted suicide. This brave man fought for our country, found the strength to seek help when he needed it and has the courage to share his journey in order to help others that may be struggling. Please listen and share with anyone you know that might be in need of help or that loves someone who is.

I'd like to let his story speak for itself, so I invite you to listen to the podcast dated 3/10/2015 by CLICKING HERE

The other reason for sharing Wendy's Guest Opinion piece in The Fall River Herald - beyond the fact that it's an amazingly written piece, worth reading in its entirety - is that it mentions the newly created community based Suicide Prevention Task Force, formed by United Neighbors and Greater Fall River Partners. A Task Force that I am honored to be a part of.

Supporters include: Saint Anne’s Hospital, Fall River Police Department, Bristol County Distict Attorney’s Office, Dog Tag Navigators, Fall River Army Band, The Samaritans, Department of Children and Families, Fall River Public Schools, Diman, Greater Fall River Re-Creation, Healthfirst, Child and Family Services, Silva-Faria Funeral Home, The Samaritans, the faith-based community, residents and families and guided by Bristol County Regional Coalition for Suicide Prevention.

The Herald News is sponsoring a Community Conversation on April 5 at 7 p.m. at Blessed Trinity Church (watch The Herald News for more information) Please join us - all are welcome.

Anyone interested in joining the coalition or learning more about our work, please contact Wendy@unfr.org 

The Silva Lining would like to thank our wonderful sponsor,

St. Anthony of Padua Credit Union - We are proud to be sponsored by such an incredible bank, that in an age of conglomerate banks treating people like numbers, maintains a relationship with its members based on trust, friendly service and loyalty. With competitive rates for savings accounts and various loans, St. Anthony of Padua can handle all of your financial needs. Convenient online banking and more information at www.stanthonyofpaduafcu.com

 


Revisiting the Memory Bus with Rose M. Grant

by Amy L. Silva Rigtrup


Just over a year ago, Rose M. Grant was a guest on The Silva Lining, having recently published her book, "I Left My Memory On A Bus Somewhere: A Bittersweet Journey Through Alzheimer's Disease". Within her book, written mainly to honor her husband's memory while also providing support and education for other caregivers and families as well as raise awareness about the disease, she mentions that writing this book was her way of putting her "grief into action". She was my inspiration to seek out and interview people that put their "grief into action" in different ways - and that's only an ounce of where her inspiration reaches!

This week Rose came back on the show to fill me in on her year and continue the conversation about this disease that has no cure, leaves no survivors, demands our attention and requires our action. She has had quite the busy year. Her book is in its second printing with a digital version in the works; she's attended 25 readings/signings; lectured at UMass Dartmouth to Nursing Students in Gerontology Rotation; Key Note Speaker at Rhode Island's Alzheimer's Association's Walk Kick-Off; remains very active with local support systems for caregivers; devotes time, effort and creativity into numerous fundraising endeavors; and most importantly, has watched her beloved family grow, expand and thrive.

Click HERE to listen to the podcast dated 3/3/2016 and CLICK HERE for Rose's first interview

Our conversation touched upon the importance of highlighting nursing homes for their quality of care, especially in meeting the needs of those in various stages of Alzheimer's disease. They are also a huge asset of positive opportunity for the family members. Yes, in a perfect world, we would all be able to keep our loved ones home to die peaceful deaths but for some families and certain situations - this simply is not an option. The loved one's condition of health is a factor that requires specific needs and like Rose said on the show, with Alzheimer's Disease, keeping your loved one home, "takes a village". From the physical needs as the stages of the disease progress, to the emotional toll taken on the caregiver, including factors of safety for unexpected or provoked behavioral aggressiveness to the abilities to escape or find ways to harm themselves - nursing homes are just better equipped to handle all of these realities that can be overwhelmingly stressful for families. The beauty is, that once these factors are removed as issues to worry about, families are free to enjoy spending time with their loved ones.

How to make the most of that time was another topic Rose and I discussed. As adults, we rely on conversation to mainly connect with people. For some phases of Alzheimer's, great conversations can be had, but sometimes, conversation simply is not possible. When that happens, It's important to remember other ways to engage and connect, like using touch, music, photographs and remembering that they can most likely still hear you - so keep talking to them. Continue efforts with engagement, because you never know when you'll spark a precious "window of lucidity". Here is the Huffington Post piece about the app I mentioned on the show that you can customize with memories, captions, photos and music to enhance engagement called GreyMatters. I urge you to watch the video about the creator who made this app for her grandmother. It took my breath away.

Children. The stages of Alzheimer's are devastating for so many reasons and on so many levels. For adults, part of the struggle is adapting to the changing personality/cognition/engagement with family members they looked up to. The challenge is to adapt and meet the person at the level they happen to be at in that moment at that stage in the disease. For adults, this is complex. For children - this is simple. Children are professionals at engaging with people, regardless of what "stage" they are in. They engage, they bond, they have an uncanny ability to bring out happiness, joy and unexpected reactions. There is a preschool in Seattle, WA that is located within a senior care center with integrated activities throughout the week that join the children and elderly together - and it's amazing. Click here to check out the documentary about the school's Intergenerational Learning Center, "Present Perfect", coming out soon.

In a nutshell, Rose is amazing and I hope my listeners want to keep hearing from her as much as I do. I wish her all of the best on her continued journey of speaking, sharing, helping, inspiring and educating.

Love for her beloved Jack mixed with the motivation to take action got her to put pen to paper and share her story. Her background as an educator of Science led her to devote proceeds from her book sales to Cure Alzheimer's Fund. What they are doing in groundbreaking. Not only should you know about it, but you should share it, support it and follow its progress. Can you imagine a world where scientific medical research was followed with the same attention and flair that celebrity marriages and championship sports were?

This fund is science - a Research Consortium made up of an all-star team of scientists working at premier research institutions across the country. 100% percent goes to research. The founders and board cover ALL operating expenses. They were responsible for the groundbreaking "Alzheimer's in a Dish Study" which promises to greatly accelerate drug testing and was reported by The New York Times as a "giant step forward." 

Please visit the Cure Alzheimer's Fund website for more information or to make a donation.

So, you're wondering how to get a copy of Rose's book? I'd love to help her get to that third printing by the end of the year! Here's how:

For caregivers or family members seeking support, The Alzheimer's Association is a great place to start and has many local partnerships on their site that you can reach out to in your area. There are two events coming up locally about Effective Communication Strategies:

  • In March @ Buttonwood Senior Center, New Bedford
  • In April @ Bristol Elder Services, Fall River

Rose serves on the Southeastern Massachusetts Partnership Caregiver Panels with the Alzheimer's Association and has Panels coming up at The Olde White Church in Swansea and St. Joseph Church in Fairhaven. Email semapartnership@gmail.com

Other great resources for caregivers are Local Council on Aging and Bristol Elder Services. Just know that you are not alone. support is available and it's the best type of support - from people that have been where you are and know the path that you are on.

The Silva Lining would like to thank our wonderful sponsor,

St. Anthony of Padua Credit Union - We are proud to be sponsored by such an incredible bank, that in an age of conglomerate banks treating people like numbers, maintains a relationship with its members based on trust, friendly service and loyalty. With competitive rates for savings accounts and various loans, St. Anthony of Padua can handle all of your financial needs. Convenient online banking and more information at www.stanthonyofpaduafcu.com


A Talk With Peter Stefan - Humanity In The Face Of Hate

by Amy L. Silva Rigtrup


For decades, Peter Stefan has been a selfless, multi-faceted, determined and unwavering voice for not only the funeral industry, but also for the voiceless, poor, outcast, and quite honestly, humanity itself.

His name became famous when in 2013, he was the funeral director that ultimately handled the remains of alleged Boston Marathon Bomber, Tamerlan Tsarnaev. The owner of Graham Putnam & Mahoney Funeral Home in Worcester, MA not only dealt with the situation with compassion, precision and integrity, but he even fed and befriended the crowds of protesters that lined the street across from his property for two and a half weeks. He received backlash from many outlets with people voicing their strong opinion that Stefan was wrong for receiving Tsarnaev’s body. It was a justifiably upsetting and emotional time for New Englanders and the entire country, but the fact remained that a body needed to be buried and couldn’t bury itself. 

On this week’s episode, Peter Stefan shared with me his story and recollections from the entire experience. For him, it all came down to a matter of human decency. As funeral directors, we take an oath much like doctors - and if you recall, there was not an inkling of controversy over all of the doctors and nurses that treated Dzhokhar Tsarnaev in the hospital before he went to prison. We may not agree with, condone, or even be able to stomach the actions of those we serve, but everyone deserves to be treated as well as a humane and dignified final disposition.

In the 2013 Person of the Year piece written about Peter in The Worcester Magazine, Peter says, “I Think, where this is the first terrorist killed on American soil, [it means] we didn’t act like they would do,” He goes on to say, “[In the Middle East] they dragged American’s bodies through the streets. We didn’t do any of that stuff. If we showed them anything at all, we rose above all of it and still did what we should do. We taught the world a lesson.” 

During our conversation on the air, he was alluding to a quote that summarizes this sentiment. Once I found the quote, I could understand why it would be hard to recall verbatim. Nonetheless, it is the perfect quote:

“Show me the manner in which a nation cares for its dead and I will measure with mathematical exactness the tender mercies of its people, their respect for the laws of the land and their loyalty to high ideals” ~ Sir William Gladstone

Peter did the right thing and I commend him for it, as a fellow funeral director and proud citizen of this country. 

There have not been many times that the final disposition of a terrorist/mass murderer was so complicated and widely covered by the media. What deserves being acknowledged is that when these horrible things happen, left in the aftermath is a body (or bodies) of the guilty - and even less thought of - their families. The grief of losing a family member, or worse a child, that has killed or brought harm to others is a level of grief that I cannot fathom to grasp the depths of, nor would wish upon anyone on earth. These families should be allowed their privacy, respect for their grief and freedom from judgement.

Beyond his experience handling Tsarnaev’s remains, there is so much more about Peter that the world needs to know about.  I again reference the article in Worcester Magazine because it truly highlights so his history, advocacy and achievements; some of which we talked about on the air.

Since there is so much to cover, I am happy to say that Peter will be coming back for two more episodes! So tune in on Thursday February 18th and again on Thursday February 25th from 2-3pm on WSAR 1480AM with LiveStream at WSAR.com

Peter has assured me that there is no question he will not answer. So if you have anything you'd like to ask him - about Tsarnaev, the funeral industry, literally anything - feel free to call in live during the shows at (508) 673-1480, comment below or email me at amy@thesilvalining.org

The Silva Lining would like to thank our wonderful sponsors,

Forethought Life Insurance, our trusted and loyal Pre-need partner since 1990. Forethought has helped us provide the families we serve with pre-planning solutions that meet our own high standards of service. Visit www.forethought.com for more information

FINE Mortuary College in Norwood, MA. If you want gain a thorough education as you prepare for a career in the funeral industry and walk into the board exam highly prepared, FINE is the school for you.  Visit www.fmc.edu for more information

St. Anthony of Padua Credit Union - We are proud to be sponsored by such an incredible bank, that in an age of conglomerate banks treating people like numbers, maintains a relationship with its members based on trust, friendly service and loyalty. With competitive rates for savings accounts and various loans, St. Anthony of Padua can handle all of your financial needs. Convenient online banking and more information at www.stanthonyofpaduafcu.com