When a person receives a serious diagnosis, his or her life is changed forever. So, too, the family members. The illness affects everyone. Even when the disease is conquered, as with cancer survivors, a special understanding of life develops as a result of having walked that path.
The beginning of the path almost always starts with grief. Certainly there is fear. And often anger. But the bedrock is grief. Sadness at the realization that life may truly be moving toward its closure.
Below are some thoughts to help your family process the natural feelings of grief and loss that arise in the context of a serious illness.
A serious illness brings up feelings of loss. Grief is a natural response.
For the person who is ill There are several deep losses and challenges to address:
The loss of his or her self-image as a healthy individual
The loss of previous roles as the illness saps time and energy: career, friend, spouse
The loss of “forever,” the human tendency to think we are immortal
Fear or anxiety about the process of dying
Concern about what awaits “on the other side”
For family members
Deep sorrow arises as it becomes clear that
your loved one may be leaving you permanently. The future together is limited.
you will no longer be a daughter/son, spouse, or sibling.
the disease may cause your loved one suffering that is difficult to witness.
your life may change radically, especially if you are to be the primary caregiver. You will need to give up or modify other roles in your life, either short-term or long-term.
Acknowledging these losses is the first step to processing your grief. Even if the losses have not happened yet, “anticipatory grief” is a normal response. It is a part of coming to terms with the unthinkable. It’s not disloyal or weak. We simply try on possible futures to get acquainted with the feelings. To practice coping. (For information about grief following the actual death of a loved one, see our article about mourning.)
Are you or your loved one grieving as you think about the future?
There is a definite balancing act with grief. The challenge is to live fully in the present while getting ready for a possible, and unwelcome, event in the future. For your relative, it is a time of facing fears and evaluating his or her life. He or she may need to prepare to say good-bye. Once physical issues such as pain or nausea are handled, it may help your loved one to concentrate on
resolving family conflict
Healing wounded relationships can help ease the sadness. In fact, a serious diagnosis often puts past grudges in perspective. When thinking about never seeing each other again, estranged family members forgive and reconnect. They frequently regret wasting precious years apart that can never be recaptured.
plans for achievable goals
Everyone needs hope, things to look forward to. Does your loved one have a bucket list? Is there a special event he or she would like to attend? A project to wrap up?
improving quality of life
On the whole, it is our daily experience that creates quality of life. How much of your loved one’s day is spent doing things that truly bring joy? The more you know about your loved one’s preferences, the more you can emphasize those pleasant experiences.
Staying close and staying “here”
For family caregivers, anticipatory grief involves a delicate balance of staying close to your loved one and enjoying whatever time remains. At the same time, if this truly is a terminal condition, you need to prepare for a future without your loved one.
Enhance the quality of your time together
Often what a seriously ill person needs most is a good listener. They need someone who will acknowledge concerns without jumping to fix things or improve them. Make time to just be together. People struggling with physical challenges move slower. It helps if you can gear to your loved one’s pace and just “be.” Join them in smelling the roses! Your calm and loving presence will be healing for everyone.
Safeguard your own well-being
Don’t feel you must spend every moment together. You cannot fill your days with caregiving and do nothing else. It’s not healthy. You are still in the land of the well. Make sure you stay there!
Give yourself breaks. Even if it’s just 20 minutes on the porch enjoying the garden or reading a book.
Get help. Now and then you have to get fully away from the house and all your responsibilities. This is the thing that family caregivers comment on most, once their loved ones are gone. In hindsight, they realize that they should have taken more breaks. It wasn’t selfish. And it was easier to do than they let themselves think. Learn from their experience!
Connect with friends. Phone, Facebook, or e-mail is the easiest. But nothing beats in-person meetings. Seeing a smile. Touching a hand. Sharing a deep belly laugh.
Talk about subjects besides caregiving. You are more than a family caregiver. And there will come a time when you are no longer a family caregiver. Be sure to stay in touch with those other sides of yourself.
Spend time with children in your life. Their freshness reminds us that life is a circle. People die and people are born.
Engage in activities that are pleasurable in and of themselves. You will be a better caregiver for taking time off. You will come back refreshed. You also will be able to process your grief more effectively if you give yourself opportunities to be relieved of it from time to time.
Don’t forget your own health. Family caregivers are notorious for ignoring their own problems. In fact, it’s quite common for a family member to have a medical emergency after a loved one passes simply because they did not attend to their own wellness. Keep those doctor and dentist appointments! You do no one any favors by sacrificing your health for the care of your loved one.
Grief can turn into depression
The blue spiral of depression is a common “side effect” of serious illness. For example, more than three-quarters of patients with advanced cancer are clinically depressed. Family members are also affected. They are far more likely to be depressed than people the same age who are not caregiving.
Depression can be treated
Depression that stems from a pending loss is understandable. But it can make the daily process of living quite difficult. This goes for the person who is ill. It also applies to family caregivers. Fortunately, depression is very treatable. You and your loved one have enough to do coping with a serious illness. You don’t need to grapple with the downward spiral of depression! Talk with your doctor.
Signs of depression
Do these symptoms ring a bell? Doctors diagnose depression if a person has experienced four or more symptoms nearly every day for the last two weeks:
fatigue, listlessness, lack of energy
inability to remember, concentrate, or think clearly
lack of motivation
no joy in activities one used to find pleasurable
withdrawal from others
changes in eating patterns (eating more or less than usual)
changes in sleeping patterns (sleeping more or less than usual)
an increase in the use of cigarettes, alcohol, or other mood-altering substances
feelings of sadness and bouts of crying
feelings of hopelessness or despair
feelings of worthlessness
feelings of guilt
thoughts of suicide
Talk with the doctor
It is not difficult to see how serious illness might bring about these symptoms! Many of the physical signs are things your relative might experience from his or her disease. If your loved one is expressing feelings of hopelessness or worthlessness, contact the doctor. Even more so if your relative talks about guilt or thoughts of suicide. Emotional suffering is every bit as painful as physical suffering. The doctor will want to help you find ways to fix it.
If you as the caregiver are experiencing four or more of these symptoms, let your doctor know. Depression is not inevitable. It is a condition that can and should be treated. Free up your energy so you can focus on the other tasks before you.
If depression seems to be in the picture, what are the barriers to getting treated? How might you overcome them?
Antidepressants are very effective. And they are not addicting. Unfortunately, they do not work right away. It takes several weeks before you will start to feel the benefits. And they do have side effects.
You may need to go through a trial and error process. Sometimes it takes trying a few different medicines to find the best one for your body.
Your loved one may not have time for this exploring. You might want to ask the health care provider if there are medications that are more likely to work, and to work quickly.
Antidepressants seem to work best when combined with “talk therapies.” Expressing our feelings is an important part of breaking the negative cycle of depression. Counselors are trained to help their clients get to the heart of a problem very quickly.
Talking with nonprofessionals can also be beneficial. Support groups are a powerful way to work through your feelings. Plus, you can gain useful tips from others who are in situations similar to your own. Those who are housebound can check out online support groups. Even talking with a good friend or family member can be helpful.
What form of “talk therapy” seems most realistic for your situation?
Caring for a seriously ill family member can lend a tinge of blue to the holidays. It may be sadness that cherished family rituals are no longer possible. Or worry that this year will be the last for your loved one. Here are some ways to handle these common stressors.
It doesn’t have to be “all or nothing.” Even if some family customs are no longer realistic, embrace what’s still possible. And let go of the guilt-laden “shoulds.”
Keep it simple. Perhaps you still gather at Mom and Dad’s, but order a precooked, take-out meal. Or have everyone contribute to the meal. Try to capture the essence in a way that no one person shoulders a big burden.
Focus on the most meaningful activities. Your energy and your loved one’s energy are limited! Pick one ritual that truly gives you that holiday lift and consider any others an “extra gift” of the season.
Acknowledge the anticipatory grief. You’re not crazy if pulling out your holiday sweater brings on a bout of tears.
A holiday can sharpen awareness of life’s impermanence. You may feel grief about the losses you have already experienced. And grief as you realize your loved one may not be with you next year. These feelings are normal. If possible, share them with someone who understands.
Celebrate your loved one’s presence. Trying to “make this holiday the best” may distract you from spending quality time with your relative. Instead, take the opportunity to cherish what you have now, and revel together in shared memories of holidays past.
Maintain your normal self-care routines. In this season of extra stress, it’s especially important to get enough sleep, eat sensibly, and exercise regularly.