All In This Together: Coping With Advanced Illness and Dying as a Family

By: Fred Nelson MSW, RSW

“The moment we heard about Dad’s cancer diagnosis, everything changed in our family. My sister has always been kind of withdrawn. Well, she started to take over. I felt like my own world had ground to a halt; I couldn’t do anything useful. My brother just got busier and busier – totally absorbed in anything as long as it had nothing to do with Dad. Our first family dinner together after we got the news: we were like strangers. We didn’t have a clue how to even talk to each other.”
 

We all have our own ways of responding to and getting through a difficult situation. Sometimes we can predict pretty well what we will feel and how we and others will react. Sometimes it’s a complete surprise – to ourselves and everyone around us. The fact is that we are all affected – subtly or in a big way – when someone in our family is diagnosed with a serious illness. Our outlook on life can change. Our behavior can change. Our roles can change. Naturally, all of this affects how we come together as a family.

‘Family’ is whatever it means to you: a parent and kids; a group of siblings and their partners; a multi-generational extended family; a group of friends who have stuck together through good and bad. That part doesn’t matter. What does matter is that every family, however structured or defined, has its own established roles, rules – generally unspoken – and ways of communicating.

Here are some examples of rules, roles and patterns of communication that may occur within a family:

• Nobody in the family talks about negative feelings. If you’re sad or angry, keep it to yourself.
• If you have an issue with someone in the family, don’t talk to them directly; speak to Mum and she’ll deal with it.
• We catch up on what everyone’s doing on Fridays after work.
• Uncle Bill always mows the lawn and cleans up after a barbecue.
• Nobody mentions Peter’s first wife, even when their son is visiting.
• Only Dad can initiate discussions about family vacations.
• Nobody ever praises a piece of pottery that wasn’t made by Mum.
• We all congratulate Chris on his game, even when his team loses.
• If you need to talk to someone about a disappointment in your life, talk to your big brother.
• Aunt Julie can’t keep a secret.
• New Year’s dinner is always at Uncle Remy’s – no exceptions.
• Amanda is always the one who pushes for us to get together to plan our holiday activities.

All of this can be thrown up in the air like a deck of cards when someone in the family gets a serious, life-limiting diagnosis. And what happens when the cards come down? The possibilities are endless as family members:

• deal in their different ways with strong emotions
• consider how the future might unfold
• move, willingly or unwillingly, into roles that have been occupied by someone else
• work within or challenge established ‘rules’ about gatherings and ways of communicating

Even if individual family members stick pretty much to the roles they have occupied in the past, it is very likely that the intensity of the situation will ‘crank up the volume’ on the ways they interact with one another and force old differences to the surface. For instance:

• I have never been compensated for the fact that Dad took you into the business and not me.
• Who said this was my job, anyway?
• Don’t tell me how I should feel!
   

Caregiving

Eventually, and sometimes right away, a serious, life-limiting illness means caregiving. Directly or indirectly, someone in the family is likely to become responsible for caregiving. The responsibility may be shared, but often it isn’t. And caregiving can be exhausting – emotionally, physically and financially. The emotional rollercoaster can be extreme (sadness to relief to hurt to fulfilment to guilt to satisfaction to tenderness to anger and resentment to just not knowing how to help). Physical challenges can be immense. (Am I ever going to get a good night’s sleep? How do I get him into this wheelchair?) And while many family caregivers will tell you that the experience is not only doable but life-enriching, tensions are inevitable. For instance, if the needs of a seriously ill family member outstrip the ability of a family caregiver to provide appropriate care. Disagreements over the right course of action are common between the main family caregiver and the person who is ill as well as among family members. Add to this mix, intense feelings, new or entrenched patterns of coping, and new roles, and it may be unrealistic to expect smooth sailing.
 

Decision-making

First and foremost, the person who is ill should remain the central decision-maker for as long as he or she chooses or is able to be.  It is also important for the person who is ill to decide who will make decisions on his or her behalf if necessary. Even if a single member of the family becomes chiefly responsible for the care of the family member who is ill, it is likely that other family members, perhaps all of them, will need to be included in some important decisions. Financial decisions are a good example, and people avoid them for a variety of reasons. For instance, a person who is dying may not want to face financial issues because doing so would require a genuine acceptance of his or her condition. Or it might mean confronting some differences in the ways individuals in the family see things.

The best advice from people who have been in this situation is to be practical, honest and straightforward. For example:

• I know that you want to be in control of your affairs and money as you have always been, but I am concerned about the ‘what-ifs’.
• If you haven’t made these decisions and completed the paperwork, I worry about us not being able to do what is important for you when you are unable to do so.

Telling people what they should do – someone who is dying or another family member – may lead to resistance and is usually not as effective as speaking for ourselves.  (E.g. You need to do this now vs. I am concerned that…)

In many families, there is a tendency to try to protect one another by avoiding frank conversations. If we talk about it, we will take away all hope. Or If we talk about death, it will happen sooner. Or This is just too hard for him/her to talk about, when in fact it might be truer to say, “This is too hard for me to talk about.”  While such reservations are common, they can actually leave all involved (the person who is ill and family members) feeling isolated and that their feelings and concerns are not heard or understood. It can take a lot of emotional energy not to say what needs to be said. In the end, expressing ourselves to one another and going through tough times together can free up energy for something more worthwhile and help us feel more connected to one another.
 

Anger

Family members are not always on the same page at the best of times. In times of stress, disagreements, conflicts and anger are much more common. Anger often comes from a place of frustration, being misunderstood, being afraid or not being heard or acknowledged. It is a natural reaction to the threat of loss or loss itself. Hurt, fear and feelings of guilt can contribute to anger. Anger often surfaces when we feel insecure or vulnerable.

When everyone is under stress due to a serious illness and an intense caregiving situation, try not to take anger personally. If you can, consider – with as much compassion as you can find within yourself – where the anger is coming from and what feelings or experiences it might be rooted in. Remember that all relationships have a history and that past grievances commonly surface during times of stress. Counselling support can help provide a fresh perspective and help family member talk to and better understand each other, although there certainly are times when differences are too entrenched and individuals are too wounded to resolve issues.

A wise person once said, ‘At any given moment, human beings are doing the best they can.’ The bottom line is knowing what each of us can and cannot take responsibility for, and finding a way to be okay with that.
 

Conflict

The presence of conflict doesn’t mean there’s something wrong with you or your family, although it certainly can feel that way. When conflict is making you feel like you or your family are failing, think again of all of the changes that are in play – changes in feelings, roles, family ‘rules’, situations, finances – and the stresses that everyone involved is enduring. In fact, it would be surprising if there were no conflict.

Again, with as much compassion for yourself and others as you can muster, step back, take a breath and consider everything this particular conflict is rooted in. Consider all the places that you and your family members find support – community, professional, through the health care system, friends and family – and figure out how to access them. Consider what you can do and what is simply beyond your control. Make sure to treat yourself with kindness and respect.

After all, you and your family members are dealing with the countless changes and challenges that come with caregiving and loss. There are no perfect solutions. But like other human beings, you are doing the best you can. Looking back on this intense time, you may, like many other families, be surprised by your resourcefulness and resilience. 

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