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.

Alone and Exhausted:

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:

• Make a list of tasks that others can do – shopping, providing nourishing meals, doing laundry, maintaining contact with others, or just being in the house so that you can nap – and resolve to say yes when asked.
• At least once each day, ask a family member or friend to help you with something. You may be doing such a good job that your need for help is invisible to others.
• If you belong to a faith community, ask what help is available. Many such communities have individuals or teams that are dedicated to practical support.
• Find out about your local hospice. Hospice professionals have the expertise to understand how long your loved one may live and can help you plan to manage this time. That plan may include in-home aides, trained volunteers, and proven community resources.
• See your doctor. Take note of your own weight gain or loss, inability to sleep, or increasing episodes of feeling like you are falling apart. Self-medicating with drugs or alcohol will decrease your capacity to provide good care and place both you and your loved one at risk.
• Thoughtfully plan for your own nutritional needs at the same time you plan for “your patient.” A hospice dietitian can help.
• Identify at least one person you can lean on, cry with, and talk to about what is happening with your spirit. End-of-life caregivers often do not wish to burden others who are already sad, so it is good to speak with an outsider, such as a counselor or member of the clergy. Hospice social workers can fill this extraordinarily important need.

Fear:

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.

Suggestions:

• Get good information on what you need to do and an expert to teach you how to do it – a hospice nurse does this every day. Make sure that you have written information and 24-hour backup for questions that arise in the middle of the night, something that a hospice can provide.
• Accept that you may reach your limit and that other options are available. Even your best intentions and a good support system may not be enough if care is complex and physically demanding. Most hospices can provide their expert care in nursing homes or assisted living facilities when care at home is not possible.
• Learn what will happen when your loved one dies. Although every detail cannot be foreseen, experienced professionals like hospice nurses can tell you generally what to expect and what your loved one will experience. Many people have feared watching someone die, but with good preparation, find it to be a healing experience.
• Decide if you would prefer to have others with you at the time of death or if you want to be alone. Make a plan that ensures you can summon others on short notice.
• Discuss what frightens you with someone who can address your specific concerns: a clergy person or hospice chaplain for spiritual worries, the doctor or nurse about physical changes, and a counselor or hospice social worker for fears about your own capacity to cope.
• Think about how you will manage the first weeks after the death but delay other decisions about your future. You have too much on your mind and heart right now for long-range planning, even though you may feel a little panicky. Put it away for another day.

The Comforter-in-charge:

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.

Suggestions:

• Let other family members know that you are grieving and that you are getting help with these emotions. Set an example.
• Gently protect yourself. It’s okay to say “I know this is awful for you, we’re all struggling in our own way. I’ll try to help you but my first priority has to be taking care of Dad, I’m sure you understand.”
• Accept how emotionally vulnerable you are rather than fighting it. Bravery – to the point of blocking or denying your feelings – is neither healthy for you nor a good model for those around you.
• Identify a safety net, not only for yourself but also for others affected by this impending loss. Children’s friends (and their parents) and teachers need to know what is happening. Have a family meeting and recommend that each person think about whom he or she can turn to for understanding. The wider this circle of support extends, the better each of you can care for yourself and each other. Hospice professionals and volunteers can be part of that safety net.

The Hard Decisions:

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.

Suggestions:

• It’s not too late to create an advance directive if the one who is ill is mentally clear and can communicate with you – get busy today. You can read more about directives on the American Bar Association site, and download the forms from Caring Connections. Hospices can also provide this information.
• Conversations are just as important as documents, so start talking and listening. If it is difficult to raise the subject, start with “Being with you has made me think about how I’d like to be treated when I am very sick. I wonder at what point I’d decide that a treatment is not making my life better and I would choose another path. Can we talk about this?”
• … or a briefer conversation: “Tell me what is most important to you in the months ahead because I want to help make sure that happens.”
• Get expert guidance on treatment decisions as the disease progresses. There is almost always something else that can be done, but the important questions are:
  • How does this treatment fit with our wishes?
  • Will it change the outcome of the disease?
  • Will it enhance or diminish the quality of life?
    Physicians trained in palliative medicine and hospice professionals can help you find the answers to these questions.
• Learn about how the body processes food and liquids as death approaches. The professionals mentioned in this article can tell you about care that does not cause discomfort and can support you in making difficult choices.

Feeling Angry and/or Guilty

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.

Suggestions:

• Make physical outlets for your anger; find an opportunity to work out in a gym or make a place at home to harmlessly hit, rip or throw something. Almost any loss produces anger, and this anger grows from a loss of control and the impending loss of the one you love. It’s normal.
• Make a list of the things that make you feel guilty. If you cannot discuss them with another, like the hospice social worker, look at the list and consider how recent information and hindsight makes you second-guess yourself. Cross off the things for which you can say, “this was the best I could do with what I knew at the time.” Forgiveness is for the remainder of the list.
• If your faith has been an important part of your life, talk to your clergy person or a hospice chaplain about your obstacles to forgiving others and forgiving yourself.
• Consider that your readiness for death to come is a sign of your acceptance of its inevitability as well as your own exhaustion. Seek additional physical and emotional support from friends and professionals. Hospices offer inpatient respite care to allow family caregivers some time for rest and renewal.
• Finally, your caregiving situation is medically, emotionally and spiritually unique. Well-meaning friends will share their stories, but do not accept comparisons that cause you distress. Know that thousands of people share your struggle at this moment, and you are all giving an amazingly complicated and wonderful gift.

Caregiving at Life's End: Facing the Challenges​ by Johanna Turner was originally published on the website of the American Hospice Foundation. ©American Hospice Foundation. All rights reserved.