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Terminal Illness and Family Upheaval

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Modern medicine is rapidly transforming the nature of death. Increasingly, sudden or quick death as the norm is being replaced with a lengthy process that only begins with a terminal diagnosis that marks the beginning of a long, winding and grueling crisis. This process is what we call the new grief. Unlike sudden death this new grief is a crisis that includes the patient as well as his or her family and loved ones. And much like Ebenezer Scrooge in Charles Dickens's "A Christmas Carol," during the long night that is terminal illness families may find themselves confronted by many unpleasant ghosts before dawn arrives. However, just as Dickens's story has a happy ending, so can the process of family grief.

Upheaval: A Normal Part of the New Grief

When they first learn that a family member is facing a terminal diagnosis most families will typically come together and rally their resources in order to aid the ill family member. We call this the "unity" stage of the new grief. At this point other priorities are often pushed aside and old grievances are put on hold as the family comes together. One or more family members may emerge as primary caregivers, while others may take on other responsibilities that were once carried by the patient. In "Saying Goodbye: How Families Can Find Renewal through Loss" we offer families specific guidelines about things that need to be addressed even at this early stage in the process. That advice is based on the many interviews we conducted with families who found themselves in the throes of this new grief, as well as with those who'd gone through it and could now look back and reflect.

Even as the family pulls together in this unity stage there will usually be some initial signs that reflect the underlying upheaval that prolonged terminal illness creates. Just living with the uncertainty that is associated with a terminal diagnosis is stressful, not only for the patient but for the entire family. Beyond that there are the actual lifestyle changes it creates. Loved ones may initially have willingly altered their own lives and shifted priorities to pitch in and accommodate the needs of the ill family member. However, that is only the beginning of a process that can extend for years. Over time, stresses and tensions will almost inevitably emerge, for the following reasons:

-- Lifestyles can get seriously skewed and out of balance as a consequence of added responsibilities. Established routines become disrupted and new ones may have to be added. Priorities may have to be realigned and the time devoted to them reapportioned. The impact of these changes may not be very noticeable (or bothersome) at first, but eventually it can't be ignored.

-- Former family roles are often re-created and issues that may have been buried long ago begin to rear their heads again. For example, people find themselves falling back into old family roles, such as mediator or problem solver, that they wouldn't choose now or had thought they'd shed long ago.

Here is how one woman -- the only child of divorced parents -- described the impact her father's prolonged battle with cancer has had on her life:

"Managing the rest of my life has been so hard. "Numbing exhaustion" is a constant state for me -- emotionally and physically. I feel like I can't even process and grieve because I need to keep going and doing the next thing and there is always some sort of crisis. I work full time as a paralegal and can hardly focus on work, plus I am constantly on the phone with doctors and taking my dad to appointments. I've been married for just two years and this situation has put so much strain on my relationship with my husband in so many ways. Yoga is the only thing that I have that makes me feel better and I never have time to go. I always feel stretched thin and like I'm not doing well enough at anything. I know my dad would not want his illness to be so stressful for me and of course I feel incredibly guilty for ever feeling like I want this to be over, for him to die so I can have my life back. At the same time, this has changed me profoundly in so many ways.

The above is a perfect example of what we mean by upheaval. Sooner or later the family confronting the new grief will drift into this stage.

What to Expect

First and foremost, expect the situation to be fluid. Also, expect everyone to experience fluctuating moods as well as periodic changes of attitude -- for example, from a willing and eager helper to a resentful and reluctant helper. Tensions can become particularly voluble during periods of remission, when it seems as if everything is back to normal and at least some family members want a respite from any added responsibilities they have taken on.

Family dynamics will dictate how the family -- as individuals and as a unit -- copes with the situation. "Family dynamics" means the way a family functions, including the unwritten rules it lives by and the roles that different family members play. Some family members, for example, are accustomed to playing the role of mediator or peacemaker; others are organizers. The strains in the family system that are caused by terminal illness first show up in the form of emotions that family members may feel uncomfortable acknowledging. Anger, resentment, and jealousy are the most common ones. Family members may feel guilty about having such feelings in a time of crisis and may try to suppress them. But such feelings are normal and to be expected. You can try to suppress such feelings, but in the end you can't help feeling as you do. Try as you may, these feelings will occasionally erupt. As dismaying as this may be, it is actually a potentially healthy thing for the family as a whole because it gives everyone an opportunity to face reality -- the stresses on the family -- and to create new family dynamics that meet changing circumstances.

It is not unusual for the stress created by chronic or terminal illness to manifest in impatience -- with the person who is ill, with fellow caregivers, and with professionals. At this point everyone's attentiveness is stretched and their reserves of energy are depleted; therefore, everyone is vulnerable to losing patience.

What to Do

First and foremost: Accept and embrace the reality of upheaval, instead of running from it or resisting it. There is use denying that the new grief places a great deal of stress on families. As time passes, it can affect every aspect of family life. It can be very uncomfortable. Yet it is that very discomfort which can set the stage for family renewal.

There is a saying that goes something like this: Every crisis creates opportunities. And so it is with terminal illness. As disruptive as the terminal illness of a loved one can be, it also presents the family with an opportunity. Embracing upheaval affords us the chance to tie up loose ends and resolve issues that may have remained buried for many years. Here is an example:

"Mike was my little brother," said Connor, "and he was only 18 when he died. He just died, and I don't know how to deal with it at times. I mean, I used to have to worry about him all the time. The whole family did. It was like we were always on call. Now I'm an only child, and I don't have to worry about him any more. But now I miss worrying about him."

Connor, who is now 30, explained how, when he was younger, he was embarrassed by the symptoms of his brother's disease: cerebral palsy. "But I always loved him," he added. However, he also felt that his brother's care was always more important to his parents than were his own needs. "I was always the healthy son," he said. "So I didn't need much attention. I think there were times when I resented it. At the same time I think I felt a little guilty being the healthy son"
Mike had been moved from the assisted living facility, where he'd lived for two years, to a hospital six weeks before his death.

Connor and his parents were at Mike's bedside 24 hours a day, staying with him in shifts. However, after three weeks of nonstop bedside monitoring, Connor and his parents were exhausted. At that point they decided to hire someone from the assisted living facility come to the hospital from midnight until six in the morning. Connor explained that as exhausting as the care-taking was, it had been even more difficult to ask for help with Mike because Connor knew that their time together would be limited and he wanted to have as much involvement with him as he could.

Connor said that he understood why his parents had initially sent Mike to live in the assisted living facility; but he also commented that that had meant they all took on an added burden because none of them felt comfortable leaving him alone for long -- they were just too accustomed to having him around. So Connor's parents made it a point to visit Mike for several hours every Saturday and Sunday so that he wouldn't feel lonely. And at least one of the three of them would stop by to visit him just about every day during the week. "I usually visited him at least twice a week and once on the weekend," Connor explained.

"After Mike went to the assisted living facility we never had a normal family life," Connor said "Life pretty much revolved around Mike. That bothered me at times, but I never felt that it would be right to complain."

Mike's death was very recent, and Connor is still grieving and having a difficult time coming to terms with the loss of his brother. However, he has been thinking about it a lot and wanted to pass along the following to others who may find themselves in a similar situation. I think that this is good advice.

-- It isn't unusual to experience "survivor's guilt," meaning the nagging guilt we can feel about being healthy while a loved one is dying. Connor clearly felt that way. "But don't let that become a burden," he advised. "You still will have to face issues and overcome obstacles of your own. Life offers us no guarantees. 'There but for the grace of God go I' as the saying goes. So there's really no reason to feel guilty."

-- Don't be too shy to ask for some attention for yourself. "That isn't being greedy," Connor said. "If I had just asked for some attention now and then from my parents I believe I would have got it. They were just distracted by Mike's obvious needs, and I held back from asking."

Add to the above the idea that we need to accept upheaval -- and the emotions and issues associated with -- as a normal part of the new grief. Keeping such feelings in, or avoiding dealing with issues such as burnout or resentment, are likely to only exacerbate the problems associated with upheaval. Better to own up to them and work on making the changes needed to help us survive this crisis.

For more information on upheaval and the new grief visit www.newgrief.com

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