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 firstname.lastname@example.org 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.
John – The power of journaling
John shares how journaling has helped him so much
John – Lasagna
John talks about the “widower’s meal”… Lasagna, and learning how to cook for his daughters after his wife died
John – What I have learned
John explains how he has changed since his wife died and now looking back what he would say to his self right after his loss
John – What to do now
John talks about the time after the initial period of grief
John – Being helpful to someone in grief
John shares his thoughts on how to help someone in grief
John – Support over time
John discusses how support changes over time
John – Empower yourself
John shares his thoughts about how to support someone in grief and his processes
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.
Post by Maureen Pollard, MSW, RSW
Grief often comes with powerful, unpredictable emotional shifts that can be painful to experience. While it’s important to find ways to sit with these feelings, to acknowledge the pain of grief and accept loss, it’s also necessary to find ways to ease and manage the pain. There are several simple activities that you can explore to help.
Ground Yourself in the Present
Use your senses to remind you that you are safe, here and now. When we are feeling intense emotions we are often caught reliving a moment in the past, or we are fretting over some anticipated event in the future. We can’t undo the past and we can’t control the future, which only intensifies these difficult feelings. When you use your senses, it pauses your racing thoughts and can help calm the turbulent feelings.
Notice the things in your environment you can see. Count the number of items that begin with the letter A, then the letter B, or count the number of green things.
Notice what you feel around your body. Sense the ground under your feet, the chair under your bottom, the clothes against your skin, the sun on your cheeks, or the breeze in your hair.
Notice what you hear. Voices. Background noises of the building such as the furnace or a fan or the hum of fluorescent lights. Music. Nature sounds.
Notice what you smell. Is the air stale or fresh? Is there some overpowering smell, or not much smell at all?
Notice if you have a taste in your mouth. Is it the sweetness or savoury taste of something you just ate, the minty freshness of toothpaste or gum, or perhaps the sour taste of morning breath.
A deep slow breath can activate the calming centre of our nervous system. When you breathe deeply and exhale slowly, you set off a cascade of calming chemicals in your brain that help ease tension and stress.
Try 4-7-8 breathing. Inhale as you count to four. Hold your breath for a count of seven. Exhale as you count to eight. Repeating this breath three times takes less than one minute, and when you practice it often you develop a muscle memory that helps you access this deep, slow breath during times of strife.
Indulge in Self Care
Enjoy a cup of your favourite herbal tea or soup. Take a hot bath, perhaps adding Epsom salts. Or a shower with your favourite body wash. The warmth and scent of these activities will work together to activate the same calming centre in your nervous system that is affected by deep, slow breathing.
Plan Intentional Change
Sometimes our routines cue us to experience distressing memories and disturbing thoughts and feelings. When this is the case, it can help to examine your schedule and activities. What seems to upset you? Is there a way to pause the activity or shift it to another time of day to try to break the connection with the difficult experience?
It’s true that we can’t help our thoughts and feelings. It’s also true that we can develop responses to the experience of intense grief that help us feel more in control as we heal.
Post by Maureen Pollard, MSW, RSW
The Unique Wounds of Ambiguous Loss
Ambiguous loss, as it relates to death, happens in two ways.
A loved one may be physically absent, missing and potentially dead, but without definite evidence to confirm a death.
A loved one may be mentally absent due to conditions like dementia or other circumstances near the end of life that make them inaccessible to us even though they are physically still alive.
In either circumstance, family and friends are impacted by the absence of a formal acknowledgement of loss that begins an outward, expected grieving process. Instead, there may be an on-going dance between anticipatory grief, and the possibility of hope.
According to the work of William Worden, the tasks of mourning include a need to accept the reality of death. When you do not have the chance to view a still body, to touch a cheek one more time, and come together with others in a gathering to honour the deceased, it can be difficult to find a way forward. Similarly, when your loved one has good days and seems bright and well, it may be hard to accept the truth of a terminal diagnosis.
In either scenario, it’s common to seek information and it’s unusual to find definite answers. The ambiguity creates a storm of mixed emotions quite different than the experience of other death that is as clear and complete as it is heartbreaking. Denial is a common experience. It can be easier to avoid the facts when the situation is uncertain.
Denial can prevent families and friends from adapting to the situation. The unresolved situation of a missing person can leave people stuck, afraid to move on for fear of letting their loved one down. In the case of a family member becoming absent through such conditions as dementia, or decreasing consciousness, denial may mean that people miss the opportunity to be present, to appreciate the person who is dying and to say a meaningful goodbye. Either way, the wounds of ambiguous loss linger, difficult to heal as the mourner struggles with questions and regret.
Healing through ambiguous loss involves the ability to redefine a relationship with the person in their absence. Sometimes this involves adapting how you think about them and other times it involves actions you take to respond to the difference in how things are now. Once you have gathered as much information about the situation as possible, you can begin to make choices about how you will think and act in relationship to this difficult situation.
There is no one right way to adapt to ambiguous loss. Each person must gather relevant information about their own situation, and then set boundaries that help with adjustment. If you face such circumstances with someone in your life, be sure to hold yourself with deep compassion as you move through these steps and tend to your own needs. It will not always be this way. You can make meaning and find hope through your thoughts and actions in such a way that will allow you to rest as easy as possible even under such circumstances.
Guest post by Sharron Spencer, SSW-G, RSSW
Sharron Spencer is a Registered Social Service Worker working in the field of Mental Health & Addictions since 2014, as a second career. Sharron currently works as the Grief & Bereavement Coordinator at Hospice Georgina. She trained in the Child & Youth Grief and Bereavement Certificate program with Sick Kids Mental Health/Hincks Dellcrest, and is nearing completion of a degree in Thanatology (the study of death, dying and bereavement) with Western University. Sharron is a training facilitator with PalCare Network of York region; providing palliative education programs to volunteers and professionals in Spirituality, Grief & Bereavement and Care for the Caregiver and also a certified facilitator of Powerful Tools for Caregivers. Sharron is also a Certified Funeral Celebrant.
Most of us don’t think about our own mortality. Often, it isn’t until we are affected by a diagnosis or sudden death personally that we have to learn how to cope with the shock, fear, anger, sadness, guilt, numbness and many other emotions that result from a death, or dying. We have become a death-denying society that resists all things related to death and dying. Our loved ones are cared for in hospital and their bodies are cared for by the funeral homes. In many ways we don’t know what or how to grieve.
When diagnosed with a life threatening illness, one is often filled with guilt and regrets; their lifestyle, choices they made, becoming a burden to others who will need to help provide care, leaving a family without an income and many other thoughts cross their mind.
Children and youth may be left with guilt and remorse after the death of a parent or other family members. They may believe they caused their loved one to become ill because they didn’t ‘behave’ the way they were asked to, or they may feel terrible because they fought with the person, or they didn’t spend enough time with their loved one because they didn’t really believe they were gong to die. It’s important to explore these possible thoughts and feelings with children and youth, helping them understand the death in an honest, age-appropriate way. This can help prevent them from imagining worst-case scenarios where they are to blame.
A caregiver to a loved one with a disease such as dementia can be filled with guilt for being exhausted and feeling resentful towards their loved one due to the amount care and attention that is required. They may also feel guilt for grieving the loss of their hopes and plans that have been lost due to the illness.
Guilt and remorse can overwhelm us whether we are grieving the death of someone we love or facing the end of our own life. These feelings are normal and very common. The trick is to not let the guilt take over and stop you from grieving your losses.
When we must watch someone we care about as they suffer and decline, we may feel helpless. That powerlessness can turn into guilt that we weren’t able to “fix” things. Even when we understand logically that there was absolutely nothing that we could’ve done differently, our heart takes on this guilt. Professional help can help you find self-compassion and forgiveness.
It can also be therapeutic to write a letter to our loved one who has died. Write about your feelings, including the guilt and the remorse. I often suggest to people to burn or shred the letter to release the guilt, shame and remorse. These painful feelings don’t serve you and won’t change the outcome. You can let them go and trust that you did the very best you could for your loved one under the difficult circumstances you faced at the end of life.