Commentary: A painful struggle against grief for the terminally ill during the festive season

Commentary: A painful struggle against grief for the terminally ill during the festive season

The dying want to be involved in activities but may not have the physical or emotional capacity to deal with stress and stimulation, says one observer.

A nurse assists an HIV-positive and tuberculosis patient at the Jose Gregorio Hernandez hospital in
A nurse assists an HIV-positive and tuberculosis patient at the Jose Gregorio Hernandez hospital in the slum of Catia in Caracas, Venezuela Nov 20, 2018. (File photo: REUTERS/Marco Bello)

PERTH: Dying doesn’t disappear at Christmas. For those who know death will come soon but don’t know exactly when, the festive season, when the air is thick with “joy”, can be particularly unsettling.

As a psychotherapist working in palliative care, I often see distressed patients in the lead up to Christmas. Patients can find decorations and carols being played in shopping centres particularly triggering, reminding them this may be their last Christmas.

The dying person may often face an inner struggle. They may want to be involved in activities but may not have the physical and emotional capacity to deal with the heightened stress and stimulation. 

Some may prefer to sit quietly and watch proceedings without necessarily getting involved in the action, but still feel like they are a part of things.

READ: Contemplating the future of dying, a commentary

Regardless of the the type of life-threatening illness, and whether an infant, child, adolescent, young, middle or older aged person is dying, both the patient and their family members may experience deep distress. 

You may feel the impending death, and your family the anticipated loss. These gloomy or morbid feelings might clash with the celebrations of Christmas.

DEALING WITH DEATH

Where possible, plan ahead how you want to spend your Christmas festive period so you don’t place additional pressure on yourself. Think about the most comfortable arrangements for you. 

Where and with whom do you want to spend Christmas Day? Which is the best time of day for you to manage different activities? Let people close to you know your thoughts.

FILE PHOTO - An electronic patients chart is shown on the wall to a hospital room in San Diego, Cal
An electronic patients chart is shown on the wall to a hospital room in San Diego, California April 17, 2017. (photo: REUTERS/Mike Blake)

The process of dying is unique to each individual. It may be quick or slow, spread over weeks or days. Palliative care specialist at Stanford University, Dr James Hallenbeck wrote:

For those who do die gradually, there’s often a final, rapid slide that happens in roughly the last few days of life — a phase known as ‘active dying’. A person may begin to lose their senses and desires. First hunger and then thirst are lost. Speech is lost next, followed by vision. The last senses to go are usually hearing and touch.

We have an ideal perception around death, that a dying person wants to be surrounded by family in their final hours. But some people in the active phase of dying may actually prefer to be alone.

And while this may be difficult for family members to hear, you can give yourself permission to ask for whatever you would like.

Studies indicate some dying people may feel they’re a burden to their family. Other people have difficulty saying “no” because they don’t want to disappoint or hurt others, or they may fear conflict. Know your limitations and don’t push beyond these to simply please others.

READ: For the dying, home hospice care offers a ray of hope, a commentary

Have kind consideration for yourself. Remember you are a person before you’re a patient. And remember it’s OK to say “no” and forgo invitations.

CARING FOR A LOVE ONE WHO'S DYING

Essential care demands such as helping the person you are caring for to feed, go to the toilet, and clean themselves, will not disappear at Christmas. If your loved one is dying at home, they may require unrelenting attention.

palliative care
According to Ministry of Social and Family Development’s survey of informal family caregivers of older adults, 60 per cent of caregivers were women.(Photo: Reuters)

Be realistic with your expectations. This can be a different and simpler Christmas than others. Allow for spontaneity. Try not to be a martyr and delegate and ask others to help. Doing so enables others to feel they’re included and contributing in special ways.

Listen to the person who is dying. Let them speak if and when they can. Gauge their mood and be guided by them. There is value in being present with the dying person without talking.

Heightened noise and activity, which often go hand in hand with the holiday season, can create distress for a terminally ill person. Ask family and friends to roster their visits over the different days of Christmas so as not to tire, overwhelm or stress the dying person.

People can think children don’t understand death and wouldn’t be able to cope with the concept, so often they may protect them by hiding it. But children are attuned to the family emotional dynamics. 

sad boy leaning on a chair
(Photo: Unsplash/Chinh Le Duc)

They know something is happening and they need their feelings validated. It can be helpful to get children involved in taking care of someone who is dying.

Research shows children do manage themselves well in the face of dying, when adults support them to deal with their responses.

READ: Never too young to feel grief, when child loses a sibling, a commentary

Expect things can change quite suddenly. Have a backup plan ready. Keep emergency contact details readily on hand always.

When dying is happening at Christmas, it’s best to allow all feelings to be expressed rather than simply putting on a brave or smiling face. Feelings are a natural response to suffering and what may be a stressful situation.

It’s mostly important to remember not to hide your needs and feelings but to speak and communicate with your loved ones. Especially when dying may be imminent.

Karen Anderson is practitioner scholar at Edith Cowan University whose has over 40 years of experience working with educational, welfare and health sectors. This commentary first appeared on The Conversation. 


Source: CNA/sl

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