By Johanna Turner
With an aging population and a dwindling pool of family members available to care for them, increasing numbers of Americans now find themselves in the role of caregiver. Much has been written about the significant challenges of caring for chronically ill family members or those with dementia, but the realities of caring for a dying loved one are unique and less understood. If you are a caregiver for someone in the final stages of life, you may recognize yourself in the following paragraphs and find benefit in the accompanying suggestions. If you have hospice care, these professionals can help you sort out the answers.
All caregivers experience isolation and fatigue. There is an unmistakable urgency in caregiving at the end of life, however, because time is short: “I can rest after this is over, but I want to do everything I can while I can.” You may not want to leave home today – or even take a long bath or short nap – because there may not be many days left.
Moreover, care requirements are often staggering. The situation may change daily, or even hourly. Frequent medications, dressing changes, safety, toileting, feeding, and emotional support seem to fill every moment. You want to do your very best and it seems important that you do it yourself, so you may be reluctant to make a place in that schedule for self-care, or to ask for help. Caregivers may be tempted to turn to food, alcohol, or to the drugs on-hand for comfort.
These go-it-alone weeks leave little time to grieve. Grief does not suddenly appear after a death, it begins with the first inkling that the one you love may not get well. When the busy-ness of caregiving shuts out grief, your emotional and physical health can suffer when it is finally faced.
Accepting your indispensable role in this situation also means accepting the importance of your own well-being. You cannot know how long you will be caregiving, and if you are determined to see it through, self-care is part of your job each day.
Suggestions:
It is no exaggeration to say that end-of-life caregiving, like raising children, is probably the most important thing you will ever do. This person that you love depends on you for the very quality of his or her life. Your actions are the difference between pain and comfort, between being agitated and being at peace. Tasks like giving injections or suppositories, ostomy care, or respiratory treatments seem daunting – and how do you shampoo hair when someone can’t get out of bed? None of us comes to caregiving with the knowledge and skills we will need. Feeling unprepared to do things you’ve never done before is understandably frightening.
Many of us are afraid of the unknown. Our culture has kept dying out of sight, and few Americans have been present for a death. You may fear what might happen at the time of death, and you may also be fearful about your own capacity to handle it. Beyond the loss is an even greater, perhaps more frightening, unknown – your life without your loved one.
Even as you have the primary responsibility for caregiving, your family and friends probably look to you for sympathy and support, as well: a parent needs to comfort the children while caring for the spouse; a daughter nurtures and provides solace to her father while tending to her dying mother. You have become the manager of this sad time for everyone, and you are really giving care in several directions at once. It is easy to get emotionally lost in this busy traffic circle of need.
In the face of the distress around you, you may also believe that it is up to you to be the brave one. It is very difficult to bear this bravery burden and assure others that all will be well when you do not believe it and feel out of control, yourself.
Caregiving at the end of life includes making decisions, some of which may seem unbearably hard. The challenge is to trust the information on which you must base these decisions and to trust your ability to make them wisely and lovingly. If the one who is ill can no longer make decisions or needs you to lead that process, you will probably need to decide when it’s time to stop aggressive, curative treatment and focus instead on comfort care. For many, this is an acknowledgment of mortality that has been kept at arm’s length, and it is not unusual for family members to disagree. An advance directive or a timely discussion – before decisions must be made – can make your life a lot easier.
Even as the disease progresses and death seems not so distant, you may still face tough choices. Will another radiation treatment lessen the pain of bone metastases or will it be too burdensome? Do we treat this pneumonia with antibiotics or let the infection run its course? Do we transfuse? Do we put in an IV or feeding tube?
The issue of feeding and hydration evokes a strong and complex emotional response. From childhood, we are taught that being well nourished and drinking lots of water is important for just about everything. Especially for women, feeding those we love feels almost like it is part of our genetic code and is synonymous with “taking good care” of another. But you may be asked to stop feeding your loved one, by mouth or by artificial means, or you may need to do the asking at the time when nourishment becomes an uncomfortable burden rather than a benefit. This is an arduous decision.
During such an intense, emotional time, you may discover feelings that disturb you. Anger is a common reaction when life seems out of control, and you may be angry at doctors, your relatives or yourself. You may just be angry that your life is so difficult right now, and perhaps you feel guilty about these feelings. Or you may have guilty regrets about what you have or have not done.
It doesn’t take much of a stretch to feel like a martyr. You have put your own life on hold to be a caregiver while others seem to go on with their lives. There are outpourings of encouragement and good wishes for the one in your care, and sometimes you feel invisible or like hired help: “You’re so strong, but I’m so worried about your brother.” Of course you want support for your loved one, but still… And that may be something else to feel guilty about.
The thought that probably appalls you the most is the wish that can come in the night after a long and difficult day, a wish for it all to be over. “Okay, death, get on with it. We’re all pretty tired here and we can’t see the end of this, and it’s just too hard. I’m not sure I can keep doing this and there is no one to whom I can hand in my resignation, so let me not hear breathing when I go back in the room…”
Each situation is unique and not every end-of-life caregiver has these feelings. But if you do, it is by no means a reflection of not loving enough, not caring enough or not intending to continue caregiving. It is a reflection of the fact that you are a human being who has reached the end of your emotional rope and you are afraid you will begin to fall short of meeting the challenges yet ahead, and it is past time to find – and accept – help.