Facing the emotional challenges of a terminal illness
Among the unimaginable dilemmas that can arise when someone is faced with a terminal illness are seemingly mundane ones — “Do I replace the broken dryer?” or even, “Do I buy a new winter coat?”
Here is some advice that can help you navigate some of life’s unavoidably dark waters.
Now or never?
Trying to negotiate what may be an ambiguous future — will it be a matter of months or years? — can leave patients and their families struggling for how best to move forward. And it is a common experience that UW Health psychologist Lori DuBenske, PhD, has seen in her work at the UW Carbone Cancer Center.
In her role, Dr. DuBenske helps patients navigate the emotional challenges of their illness. She explains that what many people may not think about in the case of a terminal illness is that death is not always imminent – and that can be incredibly difficult for patients and their families.
“When our mortality is placed in front of us in a very real way — due to an illness or even advancing age — it brings up a lot of emotional issues people aren’t prepared for,” she says.
Common themes arise when thinking about belongings
DuBenske notes there seem to be a few common themes she’s encountered during her years at the Cancer Center:
Some individuals don’t want to be a burden to their family and want to clear out their belongings while they can.
Others worry that their spouse or kids won’t know what’s valuable or meaningful, like family heirlooms.
And some individuals want to ensure certain meaningful items are given to specific individuals.
As individuals come to terms with their diagnosis, if families don’t have the same comfort level with the reality of the situation, it can make the process more difficult. S
ome family members may feel like the individual is giving up by being accepting of the reality. They may even shut down conversations by saying things like, “You’ll be fine; you’ll beat this” thinking that they are being helpful and supportive. But those feelings can become barriers as patients and their families try to move through the process.
Hope is a moving target
“Sometimes we get caught up with the idea that hope is based on survival, but that may not be where hope is the most useful. Hope is a moving target,” DuBenske explains. “At some point, a sense of hope is about maintaining a longer life, and then it shifts to wishing for pain-free quality time. Then it may shift to a positive dying experience and closeness with loved ones. Hope for someone with a terminal illness may be connecting with loved ones in a meaningful way.”
For families, DuBenske recommends taking the time to talk and share feelings — both positive and negative — about the experience and allow everyone to come together. But, she acknowledges, that can be very difficult. Families may think they are somehow protecting the person by not talking about death, while the patient may think she or he is protecting others by not talking about their fears. And for both sides it can lead to a sense of isolation and suffering.
“If we can get people to be more open and talk about the situation — and realize it’s okay — then even though there is sorrow, it is shared in the context of intimacy and support. If needed, counseling for the family can help develop communication strategies,” she explains.
Beyond the emotional aspect of the situation, patients may lack the physical strength or not be well enough to go through their belongings but it may be important to them to do so. Others may not be ready for the emotional aspect of going through belongings since the process can trigger memories – good and bad – that an individual may not be ready to face.
Why it helps to recognize what is truly important
To help, DuBenske offers a few strategies that patients have shared with her.
“Recognize what truly is important,” says DuBenske.
For those who worry about being a burden, consider a conversation with loved ones. Families can work with patients to help identify what is important. It may be the family only wants to have quality time together and not worry about cleaning out closets.
“If it’s truly important to the patient, they can consider leaving money to cover the cost of cleaning or movers,” she says.
Rather than spending time labeling items, consider actually giving them to people. DuBenske explains that it can be a powerful moment to spend time together, sharing why a particular item is being given to a specific individual.
“When that happens,” she says, “the time becomes a trigger for the memory of that special interaction rather than something that was received in the context of sadness or grief after someone has died.”
DuBenske remembers one patient who had a lot of family photos. She went through the photos and wrote on the back a memory of when the photo was taken and sent it to the individual pictured, or his/her family member. It was a meaningful experience both for the patient and the individual receiving the picture.
She acknowledges that some family members may not be ready to receive mementos or heirlooms, and that is okay. In those situations, it’s important for the family member to be honest rather than avoid the situation. Saying something like, “I’m just not ready to receive this gift” and asking for it to be placed in a special location can be a compromise.
“When patients and their families don’t feel like they can communicate, it can be painful for everyone,” says DuBenske. “There is going to be sorrow, and even anger, but working together can help everyone feel loved and supported.”