Conversations Around Grief

Walking into the BJC hospice center, a small golden tree in the front doorway catches your eye. This tree is known to Evelyn’s House patients and family members as “The Hope Tree.” This colorful heart-studded centerpiece is lined with small paper hearts written with messages and wishes to the Evelyn’s House community by the families who attain residency there.

Evelyn’s House is a part of the BJC Healthcare and hospice system that provides emotional, medical, physical, and spiritual care for terminally ill patients of all ages. Evelyn’s House is a home-like setting that provides a holistic approach to the therapy side of medical-care and the aftermath of losing a loved one.

Grieving the loss of a loved one for families can cause emotional, mental, and physical symptoms. Physical symptoms can range from headaches and stomachaches to trouble sleeping. 

“We talk about how grief affects you as a whole. So, a lot of times when you hear the word grief, you think about the emotional aspects. But anyone who’s lost someone significant in their life knows that it can really affect you physically,” said Barnes Jewish/Christian Healthcare hospice bereavement specialist Taylor Sedano.

Dealing with these symptoms, especially for someone who has never gone through a heavy loss, can seem confusing or stressful. Fortunately, there are programs and associations that can help with that healing process, managing the symptoms and paving the way for a more emotionally stable future for those who may be dealing with grief.

Andrea Tritinger, a Social Work Supervisor of Evelyn’s House, said, “The goal of Evelyn’s House [is centered around the fact that] the patients that come here typically have symptoms that are not able to be managed in their house. So maybe they’ve got pain that their nurses aren’t able to get under control, so instead of sending them to a hospital, they are able to come here and it’s just more of a comfortable and calm environment for families. So, it is to help get those symptoms under control so they can have a peaceful end of life.”

Evelyn’s House does not just provide a comfortable home-like environment for their patients, it also provides therapies of all kinds, retreats for grief counseling and grief support for every family that has lost a loved one. The patients’ therapies consist of art, music and communicative sessions with their therapist or social worker. These therapies help focus on the patient’s anxiety and pain and can help with memory making, or just simply be used as a distraction from the world around them. Group therapy can also be provided and they also provide a supportive staff of people, such as Tritinger, who have comforting personas and constantly make you feel at home.

“With any mental health situation or issue it’s better to get it out then to hold it in, so being able to to have opportunities to process that as [the patient is] going through the dying process, and then immediately after in grief as well, it just helps those long-term outcomes, which hopefully reduces depression and long term mental health issues,” said Tritinger.

Tritinger discussed that many times the families of the patients actually want that connection with others that have gone through a similar loss, because it can help them feel that they are not alone. To help form connections, and speak out on personal experiences, Evelyn’s House also holds retreats for those who have lost loved ones due to terminal illness. Tritinger said, “We also offer a camp for kids ages six to twelve, who have lost a loved one, and it’s not just our hospice families; anybody in the community can come. It’s a weekend long camp, and we do a retreat for moms who have lost a loved one as well.” These retreats are a great way for people in the community to view different perspectives of similar experiences, and help verbally process their emotions.

Evelyn’s House also has personal assets, known as “The Legacy Project.” These are small, but meaningful projects that bring out the creativity in the families, to make a story or a meaningful relic of their terminally-ill loved one. This could be a quilt, made of their favorite clothes, a video of their favorite family movie, or just a memorable story about them. The workers of Evelyn’s House all find major pride and accomplishment in the work they do with these projects. Tritinger said regarding the Legacy project as a whole, “Especially when they’re creating that story, you know you can make an impact.” Creating those impacts -no matter the size- all around helps patients grieve and come to terms with the death, and aftermath of losing a loved one.

Evelyn’s House and Barnes Jewish Hospital/Children’s Hospital (BJC) provide grief support for the families after they’ve lost a loved one for around 13 months after they’ve passed. Through this support, Evelyn’s House will send you pamphlets to help look at the statistics of grieving  and the act of dying, to help make more scientific sense of what you’re going through.

Within the pamphlets is a section on “The 5 Dimensions.” These five dimensions are presented in a diagram consisting of five main factors: spiritual, relational, emotional, physical and mental. Regarding the five dimensions, Tritinger said, “In grief we often think of the emotions that come along with [it], but then when you look at the diagram it’s like overlapping circles. So, you realize that the emotion which impacts the physical which impacts the mental, is all intertwined, and you have to find ways to heal in all of these different areas.”

In addition to the physical factor of grief, PGD, known otherwise, as prolonged grief disorder, is a newly designated disorder similar to “complicated grief.” Its effects are quite similar to that of PTSD, and depression. Some treatments looking into the cure for it are considering psychotherapy, antidepressants, and grief support groups, “especially when they involve mourners with similar grief stories,” stated the Washington Post on the recognition of Prolonged grief disorder as an official diagnosis. These treatments could be similar to that of what Evelyn’s House is aiming to achieve- a connected, safe space where any grieving person can share their experiences and feelings.

The pamphlets also offer quotes from people who have experienced loss and have gone through the BJC Hospice care experience.

“We’ve got quotes in there too from some of our family members that we have supported in bereavement before, just talking about their experience with grief. I think it really helps people to hear from others that have gone through it,” said Tritinger. 

These different healing processes, therapies and supports, along with grief support provided by BJC and Evelyn’s House, all assist to help deal with the un-navigated terrain of death and the symptoms that grieving may cause.

For many people, the grieving process is a journey. There is no right or wrong way to grieve and the impact of death can affect people for the rest of their lives. This is echoed by BJC, who urge their patients to remember that each of their grieving processes will be different, due to their unique relationships with the deceased. 

The culture surrounding death in the United States pushes the idea to “just get over it” and move on with life. With many people only being able to take three or four days off of work after the death of a loved one, the timeline for grief can be shortened. However, BJC emphasizes that there is no timeline or universal set of stages for grief. Their message stresses patience with yourself and taking the time that you need to grieve.

Although each person’s journey is different, many people try to compare their situations to others.

“I find a lot of the people I talk to who have lost a loved one try to compare those situations. Like ‘I’ve had time to prepare,’ ‘I got to talk to them about it’ ‘oh, well you know, that’s better than something that could have happened suddenly like a heart attack or car accident.’ But really, to me, I don’t think it’s ever helpful to compare your route to somebody else’s,” said Sedano.

Grief is not only different for each situation but also for each age group. For children, grief can look and feel extremely different. Many children are not fully emotionally mature when they first experience grief. These feelings can be completely different for them than they are for adults going through the same loss.

At Evelyn’s House, there are many different resources provided specifically for children who have lost a loved one. “With kids in particular, we use a lot of books to help explain what’s happening… We have picture books that talk about maintaining a connection with someone even when they are gone, and knowing that they will always be in your heart,” said Tritinger.

For kids, communication is key. Having open discussions surrounding death can help normalize the emotions that they are feeling. Continuing to view conversations about death as taboo is harmful for children, and can invalidate the grieving process. Many of these discussions start with parents or other family members.

“We do a lot of education with the parents to help normalize that experience and tell them that it actually is better if they’re involved, and that it’s better if they know upfront what’s happening, and have a chance to ask those questions, because kids pick up on things. And usually the stories they make up in their heads are sometimes worse than reality,” said Titinger.

Body language is also an important factor for kids when it comes to grief. “If young kids don’t have the words to express themselves, a lot of the time it comes out when they play, it comes out in their attachment issues,” said Sedano. “Are they starting to distance themselves? Are they being more clingy? By talking and offering space, it helps people process what’s going on.”

At both BJC and Evelyn’s House, having those specific resources and opportunities for kids is crucial in the grieving process. Creating safe spaces for open communication between adults will help kids understand the impact of death and is a way for them to experience different emotions in a healthy environment.

“Sometimes the more that you keep it in, the stories that you are creating in your head and are spinning around and around in your own thoughts, make it worse than when you speak it out loud, and are able to process it,” said Tritinger.

One of the most highlighted aspects of coping with the death of a loved one is being able to have conversations. At BJC hospice they urge bereaved people to “find someone to talk with who will accept you wherever you are in the grief process.”

“It makes it a little less scary when you can say it out loud to somebody else- especially to someone that has some training, like a social worker or a chaplain, where whatever you say they are going to be this non-judgemental and open listener,” said Tritinger.

While it is clear talking through grief is beneficial, our society often shys away from those conversations. When grieving, people often become trapped in a negative spiral of thoughts which can become harmful to their mental health and overall daily life. Being able to discuss these ideas allows them to process the thoughts before they become damaging. While the grieving process is challenging in any manner, if we can start conversations surrounding death and grief, when it comes time to experience those things ourselves, the grieving process and being able to talk about it will be easier.

“I do think that that’s a huge problem with our society- the fact that we don’t talk about death and grief. People, I feel like, then struggle when they’re going through it because it’s hard to talk about,” said Sedano.

We start this through having tough conversations at young ages. Many times, children will experience the death of a grandparent or a loved one during the time they are still reaching emotional maturity. If we are able to converse about feelings and demonstrate the value of talking through them, the message will pass through generations.

“We do a lot of education with the parents to help normalize that experience and tell them that it actually is better if they’re involved, and that it’s better if they know upfront what’s happening, and have a chance to ask those questions,” said Titinger.

Grieving the loss of a loved one is never an easy subject to approach but if we start forming constructive conversations now, it will only become easier. 

Similar to how grief manifests in a variety of ways, it also stems from many different things. Over the past 18 months, we have experienced a variety of losses due to the COVID-19 pandemic. Whether that is the loss of a loved one, better education, or experiences in general, everyone has something to grieve.