By: Shannon Ball, Patient & Family Supportive Services Coordinator – Hospice Cornwall
Anyone who has lost a loved one to a terminal illness can understand the pain, despair and physical, emotional and spiritual torment that comes along with this experience. Intense grieving emotions occur before the loved one dies; this is known as anticipatory grief. Rather than just the feelings of loss that come from the death alone, this type of grief impacts the griever in many ways, including the loss of a companion, the changing roles in the family, fear of financial changes, and the loss of dreams of what could be.
This anticipatory grief begins often at the point of diagnosis. Prognoses differ for everyone diagnosed with a terminal illness, with some having less time than others. Each of the people impacted by the diagnosis grieves differently and displays their grief in different ways. Some people may stay in denial, never acknowledging or discussing the reality of the loss with those close to them. Others may choose to be very open about the reality of the impending loss with those around them.
Choosing treatment options is also something that is unique for every person and family. Some people pursue all treatment options provided to them, maybe because it is their wish to, or maybe they choose this option for their loved ones. Others do not wish to try any treatment options and prefer to focus on comfort measures only.
This journey is one of the most stressful experiences that an individual and family can go through. It is often a time where families come together, have meaningful conversations and value the time that they have left with each other. With all of the stress, intense emotions and differing opinions, it may also cause friction among different family members. Whatever path individuals choose to take, one important factor that predicts positive outcomes for families is the ability to accept and receive support.
Carefor Hospice Cornwall’s goal is to support individuals and families facing palliative diagnoses and to provide ongoing support throughout this journey. People may hear the word ‘hospice’ and become intimated or afraid, as they associate the word with imminently dying. This is a major misconception when it comes to hospice palliative care. Our goal at Carefor Hospice Cornwall is to provide the needed supports as early on in the diagnosis stage as possible.
Community programs provide services to individuals and families to lighten the burden while they remain at home. Clients who attend the Palliative Day Program receive the opportunity to connect with others who have also been diagnosed with a palliative illness. They can open up in ways that they may not have felt comfortable doing with others. They experience moments of joy, laughter and community, while their caregivers have some needed respite time.
Caregivers who are struggling can benefit from one-on-one and group support with other caregivers. Navigating their emotions and receiving education can help families work together these stressful times. Receiving information on what to expect, and having their questions and concerns explored enables clients to have a clear understanding and avoid problems that may arise, had they not been discussed beforehand. Knowing that they always have someone to reach out to provides relief and helps them feel that they are not in this alone. All of these supportive components create resiliency for when the death eventually occurs. When someone is admitted residentially to hospice for end-of-life-care, it is critical that the education and support continues. Family members are provided the opportunity to be with their loved ones as family members, rather than caregivers. Hospice staff take on personal care tasks and allow family members to spend quality time together, building memories and having meaningful conversations. They are given the opportunity to say goodbye.
End-of-Life education is a very important component to end-of-life care. Teaching families what to expect during the dying process can prevent avoidable, traumatic experiences, which would stay with family members long after the loss takes place. Assurance that their loved ones are comfortable and receiving proper, dignified care is pivotal to their grieving experience.
Although ongoing support and education is a major determinant of loved ones having a positive grieving outcome, once the death actually occurs it can be surprising how intense the emotions of grief can be. Loved ones may have felt like they were prepared for the loss, but once the person has passed away intense yearning, and feelings of guilt, anger, sadness and loneliness can be all-encompassing. As much as people can prepare for a loss, actually experiencing the loss and the emotions of grief is something that cannot fully be prepared for.
The grieving experience for individuals is as unique as the relationship the person has with the deceased. Family members grieve and mourn differently, internally and externally. It is crucial that individuals have support networks in place. People within their own support networks, such as family, friends, or spiritual communities can be a great source of strength. Ideally, grieving individuals have multiple people that they can reach out to to discuss their loss and grief in an empathetic, non-judgmental exchange. Even if the griever has a positive, internal support network, it is recommended to also accept professional grief support. This is even more important if the griever does not have many close contacts that they feel comfortable opening up to.
Carefor Hospice Cornwall takes initiative to reach out to grieving family members after a resident passes, to check in and encourage them to participate in the different grief supports that we offer. One-on-one support and support groups with other grieving individuals allow people to receive confidential, non-judgmental support from others who understand what they are going through.
Peer support group participants learn from each other and realize that they are not alone in their experience. Sometimes it is easier for grievers to open up to people who are distanced from their immediate support network, as they do not want to ‘burden’ their loved ones while they too are also grieving. Grievers need empathetic people to walk with them in their grief experiences. They do not need people trying to ‘fix’ their grief. Often times, people need reassurance that what they are experiencing is normal.
As painful as a grieving experiencing can be, it is a natural and necessary reaction to a loss. Grief is our necessary reaction to process and cope with the loss that takes place. Grief is never fully healed; the loss stays with grievers for life, just as the love they have for the deceased never goes away. Although there is no ending point for grief, grief is also transformative. It changes over time and as our perception of the loss changes through grief work.
Reminders of the losses we experience are everywhere. Anniversaries and special occasions can result in more intense grief emotions. These experiences can be very difficult for grievers, especially if a significant amount of time has passed since the death occurred. Professional grief support encourages clients to allow themselves to fully experience whichever emotions need to be felt, and explore facets of their grief that are troubling to them and need to be worked through. This is critical in order for grievers to focus on not the loss itself, but the relationship that they had and continue to actively cherish and maintain with the deceased.
For more information about Carefor Hospice Cornwall’s programs and services, please visit us at www.cornwallhospice.com. To donate to help support these programs and services, please visit our support page.