Posts Tagged ‘death’
Nicole – Advice for Other Professionals Managing Grief
Nicole – Advice for Other Professionals Managing Grief
Nicole discusses dealing with repeated loss while working in community outreach, not being afraid to be human.
Nicole – Grieving as a community
Nicole – Grieving as a community
Nicole discusses the power of grieving together as a community. Finding connection and trust.
The Reflection Room® project: How storytelling supports processing grief
The Saint Elizabeth Foundation offers a project called the Reflection Room – a space for thinking and talking about dying, death, and grief.
The Reflection Room project is an evidence-based participatory art installation that was developed by researchers at the SE Research Centre and Memorial University in 2016. The project included a research component that evaluated the impact of Reflection Rooms as the project adapted over time to address changing needs.
The Reflection Room project was first developed to support people in community and healthcare settings to move from death-denying to death-discussing. From the first installation, the Reflection Room project has gone through three Phases of adaptation and continues to evolve.
Common elements across Reflection Rooms, whether they are set up to include an entire room, hallway, or corner of a room, include a quiet, calming space that invites visitors to read other people’s stories and post their own. The rooms are unstructured and unfacilitated, allowing visitors to engage with the space however they wish.
Over a five-year period from 2016-2020, the Reflection Room project was installed in 62 places across Canada, including in conferences, art galleries, hospices, and hospitals (Phases 1 and 2). Over a thousand stories were shared by individuals during their visits to these various Reflection Rooms. Results from the study from this period showed that storytelling can be an important part of grieving.
In 2020, Phase 3 of its adaptation and evaluation began with the SE Research Centre being asked to expand the reach of the Reflection Room to long-term care home communities in Ontario to respond to some of the accumulated pandemic-related grief in those communities. With the support of the Saint Elizabeth Foundation, Ontario Health Central, Family Councils Ontario, Ontario Centres for Learning, Research and Innovation in Long-Term Care, and Ontario Association of Residents’ Councils, over 50 homes signed up to host a Reflection Room®. In order to adapt to the environment of long-term care homes, an easy-to-set-up ‘kit’ incorporating instructions and materials (e.g., Reflection Cards, a red curtain to display Reflection Cards, candles, etc.) was developed and sent to homes free of cost. Overwhelmingly positive feedback has demonstrated that the Rooms support communities to work through grief by having a quiet space to rest and reflect, disclose emotions, process thoughts, and feel connected to others through sharing stories. The project often is complementary to other existing initiatives in long-term care homes such as palliative care committees and spiritual programs.
A collection of the stories shared over the course of the project is available to view on the Reflection Room website.
If you want to learn more about the project, contact foundation@sehc.com and listen to the Grief Stories podcast episode 64.
Neeliya Paripooranam, MSc, is a Project and Communications Manager at the SE Research Centre, overseeing the Reflection Room® project. Celina Carter, RN PhD, is a Senior Research Associate at the SE Research Centre. Paul Holyoke, PhD, is the Vice President, Research and Innovation at SE Health. Justine Giosa, PhD, is the Scientific Director, SE Research Centre and Adjunct Assistant Professor in the School of Public Health Sciences at the University of Waterloo. Hana Irving, MA, is the Director, Philanthropic Programs for the Saint Elizabeth Foundation.
Alongside
By Mike Bonikowsky
Grief is the great leveller, and the great divider. Everyone grieves, sooner or later, but no two people will experience it in the same way. No two bereavements are the same, and neither are any two consolations.
This is only more poignantly the case for people with developmental disabilities. Not only is their grief completely unique, but they are often unable to express it in traditional ways. How are we to support someone through the grieving process when they cannot, or will not, tell us what they are thinking and feeling about their loss? The answer is simple, and difficult.
In Christian theology, there is a concept called “the Holy Spirit”. This is the invisible piece of God that is everywhere all the time, with and within all people. The name given to this in the original ancient Greek is the “Paraclete”, literally, “The one who comes alongside.”
That is also our best, and only role, when supporting a person with a developmental disability to grieve. We must be the one that comes alongside. There is no closer place we can get to. We must be present, be with, perhaps not understanding or comprehending what the person we support is experiencing, but alongside them nonetheless. We must be there, ready to provide whatever we can discover of their unique need in grief.
But that coming alongside must begin before the bereavement. We must already have been there through the happier seasons of the person’s life, if we are to know them well enough to read the language of their grieving, and hope to know in what little ways we may support them. Supporting a person with a developmental disability to grieve is not a matter of coming alongside, but of remaining where we already were. It is a matter of knowing and being known by them, of being trusted. It is not so much a matter of doing anything for the person, but of being something for them: A safe place, a consistent and reliable presence. It is to be a fixed point in a confusing, chaotic world, someone of whom they can say: “When that person is here, I can expect things to be like this.” Only when this relationship is present and well-established in the ordinary times can we come alongside in the darkest, loneliest season on the person’s life, and hope to meet their unspoken needs.
And usually the answer to those needs is what it has always been: To simply be there with them, to prepare a meal for them and do the dishes afterward, to help them wash body and find clean clothes to wear. To open the curtains in the morning, so that when they emerge from the dark cave of their unique grief, for however short a time, they are greeted by a world that has not ended, and a face that they know, and that knows them.
Grief & Ice Cream
By John (Lewis) Clark, Author of upcoming book (Cook Away Your Grief).
When my wife of 18 years died in 2016, I became a single father missing the love of my life, and also had to learn how to raise two girls (13-17 at the time) on my own. I remember a conversation I had with my mother-in-law and oldest daughter that began as reminiscing over a person who became a lost love to all of us. We all talked about different aspects of my wife but shortly, it transformed into a “who meant more to her” fest.
All our points of view were out of love, but each of us had a different angle for different reasons. My mother-in-law saw my wife’s death as the loss of her baby girl, my daughter, as the loss of her mother and me, as the loss of my love. The conversation became elevated because not only was it a sensitive topic, but it became a comparison.
I dubbed this the “Umbrella Effect” because it felt like an umbrella that fit three but caused each of us to become wet on one side. When my mother-in-law made a comment that got me thinking, I had to back off my somewhat defensive position. She talked about how she felt when my wife was born. It soon made me think about how my wife felt when our babies were born, and I realized that I was solely the contributor in each case. The connections that my mother-in-law and my daughter had trumped my 18 years automatically. These two ladies had true connections with my wife. Love based on biology beats loves based on time and experiences, any day.
We all had a relevant case, but mine was getting weaker with every statement made. I had to understand that biological connections give a different justification for reminiscing. As a husband, I was torn between defending my love for my wife and understanding my mother-in-law and my daughter’s points of view. Although it hurt, I had to realize the source of the pain. I no longer wanted to be an unconscious contributor to their hurt. I had to realize that everybody mourns loss differently, and comparing only brought more hurt to an already sensitive situation.
To alleviate the tension, I grabbed three bowls from my mother-in-law’s cupboard, got the scooper, and three spoons. I pulled out the cookie dough ice cream, which prompted a truce. Peace is always achievable over ice cream. I now know that although people can be subjected to the same grief, they all process and see it differently. What is good is that everybody remembers her for the beauty she brought to our family. Although our conversation got contentious at times, it was clear that although we lost her, no one lost the love we have for her.
Tips for Grieving During the Holidays
By Alyssa Warmland
The holidays can bring up a lot of feelings, especially when you’re grieving the loss of a loved one. Whether it’s the first holiday season without someone, the holidays mark a time where someone you love died, or it’s just hard to be around celebration when you’re not feeling celebratory, December can feel heavy.
These are a few tips for grieving during the holidays:
Remind yourself that it’s okay to feel however you feel.
Feeling sad or mad? Feeling happy- and guilty for not feeling worse? Whatever comes up for you is normal. It’s okay to sit with your feelings, to give them some space when it feels right, and also to compartmentalize them if you feel like that’s best in the moment. You can acknowledge your feelings, put them in your pocket, and hold on to them during the family dinner if you want to. You can take them out of your pocket and spend time with them later. Grief is unique, and can show up in unexpected ways. It’s okay to feel however you feel.
Reach out for connection.
Sometimes we worry that we’ll make someone else upset if we mention our grief, or if we show up in a way that isn’t particularly festive. The truth is, the people who care about us want to hold space for us, even when we’re grieving. Connection can help us feel better.
Find ways to incorporate your loved one(s) into celebrations.
Did your dad have a favourite side dish your family always served at dinner? Did Oma make sugar cookies every year? Did your sister always compliment you when you wore red? Consider serving dad’s dish, or baking Oma’s cookies, or wearing red.
Share stories about your loved ones.
Sometimes it can be tempting to pretend the people we love haven’t died. As if, by not talking about them, we can pretend they’re still around. In fact, sharing stories about them can help honour them and to feel their presence. Remembering our loved ones out loud in connection with other people can feel healing.
Watch/listen/read other peoples’ stories and insights about grief.
At griefstories.org , we host stories and insights from people with lived experience in grief, as well as healthcare professionals’ insights on grief. These videos, podcasts, and blog posts are available for free 24/7, anywhere you can access the internet. Our hope is that this content may help you feel less alone.
Set boundaries.
Listen to how your body feels. You don’t have to do anything you don’t want to do. You are safe and you are worthy of operating with integrity toward yourself. Grief can be hard, and it’s okay to be gentle with yourself as you move in and through it – even during the holidays. Set whatever boundaries feel right for you. There are no rules here. You’ve got this.
Grief Literacy and Developmental Disability
By Carrie Batt, Grief Educator
Grief literacy has become a popular topic, yet it is a topic that is untapped within the disability community, specifically within the developmental sector. The sector supports and empowers people with a developmental disability and consists of families, their loved ones and service providers.
Within the sector there are very few conversations, education, or shared expertise about grief, loss, and disability. The pandemic brought to light the sheer lack of education and support that exists about grief, loss, and disability. My way of dealing with such a realization was to try to make a small change, which began by forwarding a proposal to my employer, requesting that we offer grief literacy sessions. The proposal was accepted, and we successfully offered four 1-hour grief literacy sessions, which reached a total of 20 participants. What we learned in offering these sessions was the value of learning new language to help in expressing and describing their grief experiences as, often, people with a developmental disability have grief stories that so often are unacknowledged and go unnoticed. Their grief histories are often extensive, and very painful. The painful history of the grief experienced amongst people with a developmental disability that begins with the atrocities of the institutions, the Huronia Regional Centre, The Ontario Hospital School, and The Orillia Asylum. The magnitude of such grief and loss has only recently been made public.
There is such an enormous amount of grief and the loss that until recently was unnoticed. Such unacknowledged grief within the developmental sector is far more common than ever imagined, especially when we include that of our direct support workers. Currently their grief is unheard of. Consider for a moment, supporting someone for ten years in their home, and when the supported person dies, cleaning out their room to prepare it for the next person to move in, and doing so without any recognition of your personal grief. Such scenarios play out daily within our developmental sector and just being expected to carry on with the work is the norm.
With that said, the reality remains that the developmental services sector can only benefit from receiving support and guidance from the bereavement support services sector. Such a partnership would help to bridge the gaps and begin dedicating resources towards, training education, and understanding about grief, loss and disability.
Grief and Parenting in the Disability Community
By Carrie Batt, Grief Educator
Parenting is complicated as it has so many twists and turns. There are a variety of parenting styles such as hovering, free and easy, and everything in between. The one thing parents have in common is the fact that parenting never ends, thought it changes. Many parents can look forward to their child changing as they age and gain independence. Parents often look forward to and are proud of their child leaving the nest. Yet for many parents with children who have developmental disabilities, that is not the case. These parents must offer unwavering support, care, and guidance to their child or children who live with disabilities.
These are parents who are relied on in various ways, being the primary caregiver and managing everything. Some parents aging into their 70s, 80s, and 90s remain the sole primary caregiver to their child. Their day-to-day parenting tasks have never ended as their child has grown into adulthood. In fact, for some, their parenting roles increase as their child ages and may begin to lose daily living skills, develop early-stage dementia, show signs of aging or illness, begin to regress in specific areas or require much more support. Some parents must also cope with the fact that their child may be experiencing mental health issues in combination with a developmental disability. This is a most unique parenting experience as it is all-consuming. Such parenting speaks to a level of commitment and unconditional love where unwavering support is a constant.
In conjunction with these realities, there are times when such parents become a part of the end-of-life and palliative care communities. Once their child with a disability is diagnosed with a life-limiting illness, the only choice is to navigate end-of-life care, and there is no road map for what these parents will be embarking on. When it comes to death, dying and disability there is no education or expertise readily available. The same is true for grief, loss, and disability. Currently there are few disability-sensitive supports for such families who are having to transition from being the primary care giver to preparing for the impending death of their child.
The grief surrounding these realities have yet to be spoken of or integrated into the bereavement services and are rarely acknowledged within the developmental sector. The same is true of the reality faced when a child with a disability must face to mortality of their parents and primary caregivers, as for many of these children they may never have left the family home.
This is a type of grief most cannot imagine. This type of grief has not yet been recognized, validated, and honoured. There has been no space made within our grief support services that speaks of the magnitude of the grief surrounding these families. My hope is that the light can shine to meet these needs in the developmental sector for the families we serve.
Grief and Disability: Carrie’s Story
By Carrie Batt, Grief Educator
My son says I am a mover and a shaker. He tells his friends that because of my extensive travels abroad and my volunteering. When his friends ask: “Why did she do that?” he always tells them “Because my mom believes that ‘anything is possible’.” As I look back on my journey, I know where I picked up this motto. When my baby brother was born, the doctors told my parents: “he will not walk, talk, nor know who you are”. From that day on my parents embodied that motto ‘anything is possible’ and in the end my brother does far more than walk and talk. This circumstance introduced me to the disability community knowing that people with disabilities deserve and can do more. Interestingly, I have had the privilege of working within the developmental sector in a variety of positions for more than thirty years.
In 2018, I added to my parents’ motto ‘anything is possible’ and included ‘everyone is worth it’. I added those words to the motto right after I had attended a kintsugi workshop offered by Rami Shami, a prominent member within the deathcare community. As soon as I realized that Rami had spent the last 30 years caring for the dying. I inquired about his experience in death, dying and disability. Rami unfortunately, had no experience in supporting people with a disability who were dying. Upon learning about the sheer lack of support and expertise on this topic, I proceeded to complete the end-of-life training with Beyond Yonder Community Deathcare program. Soon after, SEOL Care was created, which offers a disability-sensitive approach to death, dying, and disability.
It has become clear to me over time that we have much work to do to ensure the delivery of disability-sensitive grief literacy and grief support. In March of 2022 my proposal for four 1-hour sessions was approved, we provided the program for 20 participants. My heart was full in each session.
My heart remains full of hope that conversations, education, and expertise about disability sensitive end of life care and grief support will gain momentum as more and more people join in on this vital conversation.
Currently, there are several rays of hope that suggest grief education and support can and will be offered in a more inclusive way. As a certified grief educator, I now offer online disability-sensitive grief support services for individuals and groups. My employer is offering disability-sensitive grief literacy sessions. The Bereavement Ontario Network has shared information through their newsletter and in a network webinar, where the gentleman I support and I were the guest speakers. Bereaved Families of Ontario have been receiving multiple requests to provide grief resources for the neurodivergent community. Additionally, Bereaved Families of Ontario are seeking out speakers with lived experience related to grief and under-represented communities for their grief literacy series. I remain grateful knowing that these are hopeful times, and these examples are a positive step in the right direction.
Birthdays, Anniversaries, and Other Special Days
Rachel Herrington – Social Service Worker Graduate, Third Year Psychology Student, Equal Rights and Community Advocate
It has been 10 years since my grandmother passed away and it never fails, every year leading up to her birthday I spend weeks with a pit of sadness and remorse in my stomach. I spend my days feeling this way and not understanding why then something makes the date catch my eye and it hits – It’s her birthday.
When we are grieving, some days are more difficult than others. Grief comes in waves like the sea and can feel like an intertwining labyrinth of emotions. Birthdays, anniversaries, and special dates that are associated with our loved one who has died can contribute to more emotionally intense days which can be worsened through the anticipation and “what ifs” of the upcoming day. These difficult days can leave us feeling defeated and it can almost feel like we’ve taken two steps backward in our grieving process, but grief does not have a timeline, and these feelings of setbacks are opportunities for healing.
Before the Day:
Communicate and set boundaries with others – think about how you want to approach the day and share your wants, needs, and desires with others. Clearly communicating your wants and needs with others will allow the opportunity for you to set the expectation for the day which can help relieve the intense feelings of anticipation.
Remember there is no right or wrong way to celebrate special days – It is important to remember that there is no right or wrong way to grieve and there is no written code or rule on how these special days are to be approached. However you decide to approach the day is the right way.
On the Day:
Allow yourself the opportunity for space from others – it is important to allow there to be an opportunity for you to step away and have a safe space to feel your emotions if you need to. If you are attending someone else’s home for the occasion plan a way that you can step away or leave with ease if you need to.
Find something that grounds you when intense emotions arise – if intense emotions are arising it can be helpful to find something to help ground you in the moment. This could be a physical item such as a small trinket in your pocket that you can hold, squeeze, and focus on in your hand, or it can be through positive mental imagery, deep breathing, and/or stress relieving acupressure, etc.
Take deep breaths – practicing deep breathing can help reduce stress and can increase resiliency during highly emotional or stressful situations.
If things don’t go as planned, that is okay – grief is a process with no timelines or set of rules, and sometimes things do not always go the way we plan and that is okay. Allow yourself time, patience, and understanding while you adapt to living with your unique grief experience.
When Death Feels like a Thief
By Amanda Sebastian-Carrier.
Amanda Sebastian-Carrier is a communications professional who writes about her grief journey as a form of healing.
Thief!
Oh, how loudly I’d yell the words, shaking my fist at its back as it ran from me through the crowded bazaar. You would find me, soaked in tears, panting and crying and trying to explain that something very precious had been taken from me by that, that, THAT THIEF!
In the heart of my grief, at my frailest, all I could see was what was no more. I grieved all that was stolen from me by death; love, security and even my very self. Had I known the value of having every pocket of who I was, picked bare by grief, I would not have fought so hard to hold onto it all. I’d have let that cutpurse have it all without raising an alarm. That egg, it could take the golden globs of joy, the silvery wisps of laughter and the precious stones of delight that once filled my world and sell them all to the highest bidder. How could I have seen the faceless bidder, behind their paddle, was me. Grief, that panderer, was only taking from me what I could not currently carry and would sell it back, piece by piece, as the currency of healing was paid.
If only I’d had a clue that the larceny committed by grief was not the crime I was reporting, I’d have stopped much earlier. Before death, I had no idea that the theft of all you knew and love and the process of reclaiming your sense of security and self were a process that had the ability to change your life forever, but not how you might think. Grief and mourning can lead to healing if you do the work. If you don’t waste time filing reports to the universe about the misappropriation of your loved one. If you immerse yourself in the process of mourning, instead of decrying the looting of your life. If you truly, honestly, and mindfully, say goodbye instead of trying to hold on. If you can do all that, the only thing that grief is able to steal is your pain. You just have to be willing to give it up, let it be taken.
It’s only now, after I have made my peace with the plundering pirates of grief that I can see what I saw as theft, was actually a gift. The thief that is grief was not stealing all that was happy and good in my life, it was stealing my pain. Grief sat on me, taking all the things I didn’t know how to process, and filtered them through different lenses. It sat with me, taking from me each tear that fell, each shaky breath and each battered heartbeat. Grief took all I had, each story, each memory, and each emotion from me until I began to have room to process life again. Grief took, not a life in the way death had, but death; out of the way of life. Death stole life and grief; grief gave it back.
What Does Grief Support Look Like?
Post by Maureen Pollard, MSW, RSW
When we experience significant, on-going symptoms of grief that interfere with our adjustment to the reality of our loss, it can be time to seek professional help. It can be difficult to know where to find help and what grief support options are available.
Begin by asking for a referral. Maybe your family or friends have received good grief support they would recommend. Your doctor can typically provide a referral or you can conduct an internet search. When you find a grief support program on the internet, take time to examine the website thoroughly then connect by email or telephone to ask any questions you have before deciding which support might be the best fit for you.
Types of Grief Support:
Individual counselling with a therapist. A professional who has experience and knowledge in the area of dying, death and grief will listen to your story without judgment and then co-create a plan for healing that feels comfortable for you. The time you spend in counselling should be dedicated to your grief, with a focus on helping you find your way through your experience using information, insights and skill of the therapist to help you through the complex feelings and tasks.
Group therapy. This type of support may be led by a professional, or may be offered by peers who have experienced a similar loss. Groups can offer a rich support experience that lets you know you are not alone, and offers you the opportunity to learn from several others living with a similar loss. The time you spend in group will be shared and with a focus on topics relevant to the group’s purpose rather than any one group member’s situation. It’s important to learn about how the group works and what types of activities you’ll experience as you decide whether to try attending a group. If the group is run by peers, ask what type of training and support they received to ensure they’re delivering quality care.
On-line forums. There are many groups and forums focused on grief education and support on the internet. These are easy to access and allow you to participate at your own comfort level, either by simply reading posts or actively sharing your own situation, seeking support and offering support to others. A forum can create a sense of community among its membership, providing a great source of information and support from others who have a similar experience of loss who share what they have learned. In public internet forums there is always a risk of interference by people who post to cause trouble, but private, members-only, moderated forums can significantly reduce this risk.
Remember, whatever type of grief support you try beyond family and friends, don’t be afraid to quit if the style or structure of the support doesn’t feel comfortable or helpful. If you’re still experiencing the symptoms that led to your decision to seek additional help, please don’t stop trying to find the kind of support that can meet your needs. There are many different types of counsellors, groups and forums and it can take some time to find the one that’s right for you. Your healing is worth it!