Friday, March 14, 2014

Hope and healing for the cancer patient's family

The diagnosis of cancer is too often equated with a dead-end sign on a road. It may feel that way both for the patient and his family, especially upon being told the news by the doctor. But the fact is, while there are indeed some dead-end signs on the road of life, cancer is not one of them because life goes on amid the treatment sessions, physical pains, expressions of concern from relatives and friends, and the regular day-to-day tasks, which all cancer patients go through. Life remains a journey headed for the same destination, and a terminal illness – like any other significant condition or incident one experiences – simply means making adjustments and preparations accordingly. Call them “detours” or “bumpy roads” but as with any challenge a family member faces, the rest of the family ought to be there to guide him towards the destination, accompanying and supporting him through rough roads, bleak stretches, and serene moments.

A serious illness affects the entire family, and cancer is normally a remarkable source of stress for everyone involved – after all, no one relishes seeing a loved one suffer. The expenses incurred, too, can put considerable pressure on the family. But as with any challenge, it is outlook and practical measures which determine the way the situation progresses and, inadvertently, how both patient and family will handle all that comes with a terminal illness.

Here are some realities to consider about healing, family life, and terminal illness which may empower a family to be just what is needed at a time like this – an ally, together with the doctors, in truly accompanying and supporting the loved one with cancer.

Caregiver burnout 
Caring for a person with cancer may mean light tasks like preparing meals and driving him to and from the hospital for treatments, or more demanding ones such as giving baths, helping him deal with the medication’s side effects, or delegating some work-related duties at the spouse’s office when he can no longer carry out the tasks himself. One common source of stress is when providing care for the beloved consumes a lot of time and energy on the part of the primary caregiver – often the husband or wife, or the closest relative in the absence of a spouse, says palliative care specialist Liza Manalo, M.D. of the Cancer Center at The Medical City.

“Even the nurses have shifting in taking care of patients, so family members should also have some kind of shifting, taking turns. Schedule the caregiving… not just one person caring for the patient 24/7 because that’s what makes him prone to caregiver fatigue,” Dr. Manalo explains.

“Can you imagine the backache you’ll have due to lifting the patient if he is immobile? That’s so painful, and that aggravates the stress. Because of the pain you can’t sleep, or some family members can’t eat because they’re at the beck and call of the patient. Be realistic -- if you’re not sleeping well or eating well, you’ll get sick,” she adds.

In other words, no single family member should take on the responsibilities of caring for the cancer patient, everyone pitches in according to what he can give, and hiring a part-time caregiver is recommended should the need arise.

Imagined guilt 
Closely related to the matter of caregiver burnout is the tendency of some family members to stop engaging in hobbies and other regular activities to devote all their time to their sick beloved. This can take a toll on the person’s health, according to Dr. Manalo, and even put a strain on relationships. If you may be in such a situation, the physician points out that rest and recreation are fine even when a loved one is serious ill. She encounters quite a few who experience such feelings of guilt and recalls a counseling session she had with a patient’s wife.

“I told her ‘think of things you enjoy. Don’t stop doing them. What about hiring a caregiver for two hours a day or a few days of the week then you do that?’ It could be anything -- reading, knitting, playing mahjong, taking a warm bath, going out with friends. It depends on what you enjoy, what will make you relax,” she says. 

The doctor explains some may feel guilt-ridden and end up having unrealistic expectations of themselves. But devoting all of one’s energy to the care of the sick family member is unhealthy. She recalls gently teasing the lady in one instance: “’You’re going to die sooner than your spouse because you’re so stressed that you’re going to have a heart attack,’ I teased her. ‘O, ingat tayo para di ka mag-develop ng stress-related cancer. You don’t want to be my patient…’ to which the cancer patient’s wife agreed.

Proper closure
As mentioned earlier, receiving a diagnosis of cancer does not mean a dead end. What it has actually been to many is an eye opener – one that has led them to re-evaluate their life, sort out and determine their priorities, and prepare well for whatever will come. The possibility that the time one spends in this life will be shortened has a way of jolting anyone into taking another perspective on life. Fortunately, such a shift in perspective – with the guidance of those around him – can help the cancer patient achieve proper closure by the time he breathes his last. And what family does not want this for their beloved? Knowing that he was able to settle personal, professional and family matters, and is prepared for whatever will come after he dies, expectedly gives the family peace of mind, too.

Dr. Manalo emphasizes that the family has a significant role to play in the patient’s achieving proper closure, and points to the results of local and foreign studies concerning end-of-life issues – specifically, what patients consider a good death.

“According to studies and to the testimonies of my former patients, a good death is always equal to good closure, and good closure is defined as you closing all the spheres of your life,” she says.

“Personal closure refers to your dreams and ambitions – you put a closure to these. Professional closure…in your work, has your work been turned over to the person who will take on your job after you’re gone?”

“Family closure, meaning you put things right that had gone wrong in family relationships,” Dr. Manalo continues. “It’s time to say sorry or it’s time to receive the apologies of the people who may have offended you.”

The doctor added that palliative care includes assisting the patient and the family even in achieving financial closure, from reminding them of bank policies regarding deceased account holders and the bereaved family, to broaching the need for a written will if there is none, to even helping them make decisions concerning interment details.

“It’s an unpleasant topic to talk about but once they have accepted the reality that the patient is dying, we move on to that,” Dr. Manalo says, adding that in many cases, the patient has already talked about such details with the family because communication lines were open.

“Once I have helped the patient and the family achieve closure, most of the patients who have been under our care die very peacefully – I’m very happy to say that.”

Hence, it is no surprise that families that keep the patient in the dark about the seriousness of his condition experience additional stress. How then is the terminally ill patient to go about fixing his affairs and preparing for a good death when in the first place he is unaware that he has little time left?

“Keeping the truth from the ill patient always creates barriers because you’ll always be acting out a farce, because the reality is the patient is terminally ill. So it creates an unnecessary barrier and the lines of communication are not open,” the palliative care specialist laments. “And this is the time when the lines of communication should be really open.”

Faith and optimism
“There will always be that aspect of uncertainty in our life,” she continues, “so the best is to take each day as it comes, to think of each day as a gift. And a gift is freely given by someone else – God.”
While most people think only of the physical and medical aspect of care, specialists in palliative care, are trained in psycho-social support and spiritual care, which end up boosting the faith and optimism of patients.

“Even this idea of going back to the sacraments, fostering spiritual life, a life of prayer, having devotions…this is part of the care given to patients,” Dr. Manalo says.

Overcoming fears
After talking with patients’ families, through which concerns are threshed out, the doctor learns that what keeps them from disclosing the truth to their loved one is often the fear that the patient will sink into depression upon being told of the diagnosis. But when Dr. Manalo assures them that she can prevent depression and that she will be there for the patient, “most of the time they get convinced,” she says.
Apparently, psycho-social counseling – which palliative care is all about – goes a long way in enabling cancer patients to face their journey resolutely and peacefully and in helping families truly accompany their loved one the whole way. When the family is able to see past the dead-end sign, the more they can support their loved one through the bumpy roads and bleak stretches expected in the journey of every cancer patient. 

Health.Care magazine
First Quarter 2014 

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