When Someone You Love is Terminally Ill

 

By Robert Hromas, MD

Published in Healthwise, Fall/Winter 1996

 

There are ways to help your terminally ill loved one, which may actually add value to your relationship before this is over.

 

As a doctor who specializes in treating cancer, I’ve taken care of hundreds of seriously ill patients. Some of them recovered, thanks to remarkable new treatments that have been developed in the past few years. Sadly, though, many of them didn’t get better but ended up terminally ill – a phrase that usually means that regardless of what we do medically, the patient will not live more than a few months.

 

No matter how many times I have to tell a patient (or family) that recovery isn’t likely, it still feels bad. There’s no use lying about it – dying, or helping someone who is dying, hurts.

 

But I chose this field partly because I had seen how devastating terminal illness can be, even for the survivors. So I wanted to do everything I could to help people not only survive but actually change for the better, while at the same time helping their loved one face the final horizon with courage, grace, and peace.

 

Speaking from experience…

 

Before I get into how this can happen, let me assure you this is not just theoretical advice based on lectures, journals, and detached observation. Even physicians’ relatives get sick, and sometimes there’s nothing more that can be done. Not long ago, my wife, Shari, got the phone call we hoped would never come. Her mother, who had had surgery followed by radiation for localized breast cancer several years earlier, had now developed a mass in her abdomen.

 

“The surgeon thinks it might be the cancer returning,” Shari said, as she laid her head on my shoulder. “I feel lost, like a wind is sweeping me away.”

 

With my experience, I should have been better prepared. But we both felt destabilized by the news, as if the ground were rocking under our feet. The shock, the immediate sense of loss that accompanies a terminal diagnosis, is always greater than you imagine it could possibly be.

 

The good news, if you’re facing something like this right now, is that you can re-establish a foundation on which to stand during this storm. There are ways to help your terminally ill loved one, which may actually add value to your relationship before this is over. Not only that, but there are also ways to help yourself make it through this, physically, emotionally, and spiritually.

 

It’s a marathon, not a sprint

 

Quite often, a terminal illness lasts weeks or even months. This interval between the diagnosis and when your loved one passes away can be a grueling, exhausting experience. In some ways, it is like a track race, where there’s a starting point and a finish line. And when you’re out there running, the pain of it can simply fill your entire consciousness. You wish it would end so you could stop running before you collapse…but on the other hand, you also want the race to keep getting longer.

 

Most cases I’m involved with are marathons, not sprints. However, I’ve seen a lot of family members hit the ground running so fast that toward the end of the patient’s race, they had nothing left to give.

 

That’s what happened with Ellen, whose son, Tony, had acute leukemia. Ellen totally dedicated herself to staying with Tony. For weeks, twenty-four hours a day, she maintained a vigil by his bed in the hospital. She slept poorly and ate irregularly – often just grabbing some leftovers from his tray. If by force of sheer effort she could make her son well again, she was going to do it. Nothing would be left to chance.

 

But induction therapy for leukemia is a long process. Ellen stopped taking care of herself, becoming more and more disheveled. She lost weight. She became agitated with any perceived setback, regardless how minor, and eventually became more of a detriment than a benefit to Tony. In the end, she broke down completely and had to take a lot of time away from the hospital when Tony needed her more than he had earlier.

 

No one doubted Ellen’s sincerity or depth of commitment to her son. But, by sprinting, Ellen used up her emotional and physical reserves before the end of Tony’s race. Driven by her need to approach Tony’s crisis on her own terms, she sometimes demanded that we do things for her son (or that he consent to things) that he really didn’t need or want.

 

A sprinter can be intrusive and demanding. If you really want to help your terminally ill loved one, find out first what kind of race it will be, as well as how the patient wants to run it. Then make it clear that you’ll be there in the end, still alongside, still available, with something to give.

 

Once is hard enough

 

After a “terminal” diagnosis has been given, one common mistake my patients and their families make is dwelling too much on the difficulties of the not-too-distant future. This threatens whatever happiness may still be possible. Worse, it has the net effect of putting everybody through the loss twice.

 

Sometimes the patient does this to himself. Charlie, for example, kept asking me how he would die. “Will it be painful?” was one of his frequent questions. I told him I could almost certainly relieve any pain he may have, but I could not tell him exactly how he would die. For Charlie, however, his own dying became an obsession. He read a great deal on the subject. He talked to a number of physicians. Instead of spending time on all the good and pleasant things still in his life, he spent his last few months thinking about dying.

 

Sometimes, family members choose this approach. Joe, a patient’s husband, kept repeating the same questions about his wife’s illness. This started to irritate me, until I realized that Joe was terrified of Mary’s impending death. He loved her so much that he could not imagine life without her, and he was trying to come to grips with that idea. But by approaching it in this way, Joe was missing the pleasant things they could still share with each other. In addition, it forced Mary to dwell on what was happening to her, which she might not have wanted to do.

 

I believe that patients and their families do better if they do not think too far ahead. Obviously, there must be a balance here. Some things must be planned, and certain topics are unavoidable. However, by dwelling on all the hard things in the future, you end up living them twice, once in your thoughts and then again when the actual event happens.

 

What you should expect

 

Most terminal patients and their families go through three common phases:

 

Unreality. It’s very hard, at first, to believe what you’re hearing and to integrate the information into your life. Some people feel set adrift emotionally. Others feel light-headed, even giddy. I expected this, they think. It’s not so bad. Others don’t feel much of anything, which is there way of avoiding the full impact of the bad news.

 

There’s no right or wrong here, just individuals grappling with one of life’s hardest facts: Soon somebody they’ve counted on will be gone. At first, it’s a vague idea that just doesn’t seem to fit. This phase sometimes lasts months; some people never cope with it. However, until you get past it, you won’t be able to offer much practical assistance because you won’t be able to think realistically about what’s happening.

 

Grieving. The fact that your loved one is dying impacts almost everything you do. It is like trying to fit a bulky piece of furniture into a room that is too small. Everything else has to be shifted around. It can even dominate your thoughts to the exclusion of other, perhaps equally important, things.

 

The sadness and sense of loss are normal. You hurt because you’re realizing what the loss will mean. You are coming to grips with what your life will be like without the other person.

 

Yet this phase should not be permanent either. People caught in this phase are in danger of being so absorbed by the illness that other issues, or more importantly, other people, suffer. I remember a little girl, the sister of a comatose, dying bone marrow transplant patient, going up to her mother and saying, “Mama, I’m not sick.” The parents had become so preoccupied with their feelings about their son’s impending death they had been neglecting their daughter.

 

Perspective. In this phase patients and their families are often able to view the event as if from a distance, in the grater context of all the good things they have shared in the past. They make peace with each other for past errors. More importantly, they often make peace with themselves. They stop blaming themselves for imperfections in the relationship. They try to live out, as fully as possible, whatever time remains. They come to see dying as a part of living; it doesn’t have to ruin the memory of that loved one’s life.

 

I’m not suggesting that you try to look beyond the immediate struggle, as if doing that could protect you from its impact. This experience will change your life irrevocably. But your loved one would want it changed for the better, not worse. You can help this happen by choosing to carry with you the good qualities of your loved one, expressing these qualities in your relationships with other people.

 

What you can do for your loved one

 

Families often feel helpless before the onslaught of fatal disease. But there are at least four ways to make the experience easier for the patient:

 

1. Build the person’s self-esteem. Dying is degrading. It gradually tears down what was once a marvelous physical machine. This can be very depressing. Doubt of self-worth creep in to the point that the person may just want to die and get out of the way.

 

You can offset this by giving value to past events and relationships, praising previous actions and accomplishments. Don’t criticize past mistakes, however, or repeat old arguments. Reconciliations are important to a dying person – and to those who remain behind. These are achieved not by winning old battles but by confessing your own responsibilities and forgiving other for theirs.

 

People are often abandoned as they die, and your loved one may have seen this happen to friends. So, one of the most significant gifts you can give the patient is the assurance that you will be there as long as you’re needed. Don’t make empty promises or commitments you have no intention of keeping. But you can offset the person’s fears by being there, being cheerful, and by asking questions that will help your loved on express how he or she is thinking and feeling about what is taking place. Avoid judging what is said or comparing the feelings to anyone else’s (including your own). In any way you can, honor the person, for it is always heroic to face death head-on.

 

2. Create periods of grace. One of the best ways to redeem the time left for you and your loved one is to do things that will help you both escape the weight of the illness, even if it means pushing a wheelchair around. Go shopping, to movies, to the library, to concerts, to athletic event – wherever the patient wants to go.

 

Taking one more vacation together is not as frivolous an ideas as you might think, especially if your past vacations have been highlights of your life together. Certainly there may be risks involved, and you should talk these over with your loved one’s physician. But the doctor will probably be far more supportive of this idea than you might expect.

 

3. Help with practical decisions. While it is best not to dwell on the likely outcome of the illness, some things must be addressed. For example, your loved one should make a will, if this hasn’t been done already. This is a delicate subject, perhaps one that a trusted adviser, outside the family, might be asked to pursue. The important thing is not who broaches the matter, but that it gets done while the person is still capable of dealing with his or her estate.

 

You can help in other practical ways. Insurance can be complex and sometimes capricious. Filling out forms, dealing with insurance agents or hospital billing personnel, and calling to obtain needed medical information are all ways to help your loved one get through this difficult time.

 

Another important consideration is whether your loved one wants to make a living will, covering such things as whether or not cardio-pulmonary resuscitation (CPR) is desired should the heart stop.

 

A living will also may specify what other treatments the patient wants or doesn’t want when death seems imminent. Typically, these include directives about extraordinary means of sustaining life, such as the use of a ventilator, certain medications, or even surgical intervention. Some living wills stipulate that food and water not be provided by intravenous catheter or nasogastric tube if these would only prolong the dying process. Since state laws vary widely on what living wills may or may not include, you should get legal advice about this.

 

4. Provide physical assistance. Most families of terminal patients want to help, physically, but don’t know where to start.

 

Depending on the circumstances, however, you really don’t have to look too hard to see what needs doing. For instance, are there kids who need to be taken care of? Does the house need cleaning? Would prepared meals be helpful? Put yourself in that person’s shoes. What would you need to have done if you were that sick?

 

Don’t intrude, but on the other hand don’t wait to be asked. Instead, volunteer by giving a specific time and place and way you intend to help. You might even express thanks for the opportunity.

 

You can also specifically care for your loved one’s health, even if you are not a health care worker. Making sure that medication is taken, ensuring that good nutrition and hygiene are maintained, and that the patient exercises can all make a difference in how long he or she will live. For example, since most infections in cancer patients come from organisms in their own body, good hygiene is extremely important.

 

Things you can do for yourself

 

Just as a marathon runner needs to pace himself and replenish lost nutrients, you must do several things to remain effective in caring for your loved one.

 

1. Maintain good eating and sleeping patterns. You can only give as good care for a loved one as you give to yourself. Take time to eat nutritious meals, and sleep on a regular schedule. You will be more cheerful and better able to perform undesirable tasks.

 

2. Schedule your own family times. Don’t neglect the rest of your family while a loved one is dying. Schedule family time that is inviolate. Your larger family is your best source of support. If they are unhappy, it will be doubly difficult to care for your dying loved ones.

 

3. Take regular breaks. You will do a better job if you rest your spirit occasionally and focus your attention on something you enjoy, such as a hobby or sport. Physical exercise is ideal – playing golf or tennis, swimming, bicycling, or walking. Exercise burns off some of the adrenaline generated by stress. However, you can also relax by reading, shopping, visiting friends or museums.

 

Facing the anxiety

 

The thought of dying makes everyone anxious. When a person is terminally ill, we come face to face with the possibility of our own death. In a way, when our loved one is dying, some part of ourselves is dying, too. Death forces us to deal with whether or not  there is more to life than we can see. We are conscious of a physical reality called life, but we also can imagine another reality – eternity.

 

I have found that dying cancer patients have one of three perspectives on their death. They may believe that death is the end, and after that there is nothingness. Although this perspective is widely accepted intellectually, it is by far the least common attitude I witness when people are actually facing death.

 

The second perspective on death is one of merging with an all-encompassing god, from whom we sprang and into whom we shall return. This attitude has its origins in Hinduism and owes its popularity in this country to the New Age movement.

 

The third perspective maintains the person’s individuality beyond this life. Yes, there is loss for a time, but the confidence of spending eternity with a personal God because of faith in Jesus Christ can overcome that sadness with joy. The expectation of renewing relationships with those who have gone before is another factor that helps overcome the person’s present struggle.

 

Even if I wasn’t a believer myself, my observations as a physician prove that this view of dying (and living) is the only one that can fill the void in our hearts and relieve our anxiety about death.

 

Bob Emily knew he was going to die from his relapsed leukemia. In one of my last visits with him, I asked him how he was feeling emotionally.

 

“If I did not have the Lord Jesus,” he told me, “I would be scared out of my wits.”

 

So would I, Bob, so would I.