Helpful Advice for Caregivers

Alone and Exhausted
Because of the important and intense work that caregivers do, they sometimes feel like they need to “do it all.” This can lead to exhaustion and isolation, which could affect the quality of caregiving. You may appear to be doing such an excellent job that others may not see how challenging caregiving can be. Don’t be afraid to ask for help.

  • Make a list of tasks that others can do, such as shopping, providing nourishing meals, doing laundry, or just being in the house providing companionship so that you can nap, and resolve to say “yes” when asked if you need help.
  • If you belong to a faith community, ask what help is available; many faith-based communities have individuals or teams that are dedicated to practical support.
  • If your loved one is in hospice care, ask about any services the hospice provides to support family caregivers, such as in-home aides, trained volunteers, and proven community resources.
  • If you are experiencing physical or medical issues, such as significant weight gain or loss, inability to sleep, or increasing episodes of anxiety, contact your medical provider.
  • Self-medicating with drugs or alcohol will decrease your capacity to provide good care, and place both you and your loved one at risk. If you feel like you are at risk of harming yourself or others, reach out for help right away.
  • Thoughtfully plan for your own nutritional needs at the same time you plan for “your patient.”
  • Identify at least one person you can lean on, cry with, and talk to.  End-of-life caregivers often do not wish to burden others who are already sad, so it is often good to speak with an outsider, such as a counselor or member of the clergy. Hospice social workers can also fill this extraordinarily important need or connect you with other caregivers for support.
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. Just as physical self-care is essential, so too is emotional self-care.
  • Let other family members know that you too are grieving and that you are getting help with these emotions. Set an example for them.
  • Gently protect yourself and 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. If there are children in your family who will be impacted by the death, their close friends’ families and teachers need to know what is happening. If there are loved ones who live far away, find ways to keep them informed about the situation and encourage them to find support so you do not have to be their main source of comfort. 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.

Coping with Feelings of Being Unprepared
Tasks like giving injections or suppositories, ostomy care, or respiratory treatments may at first seem daunting – and how do you shampoo hair when someone can’t get out of bed? Feeling unprepared to do things you’ve never done before is understandably frightening.
  • Rely on the hospice professionals to give you good information on what you need to do and how to do it. Make sure that you have written information and 24-hour backup for questions that arise in the middle of the night, which hospice can provide.
  • If care is complex and physically demanding for a prolonged period of time, acknowledge that you may need additional support in caring for your loved one. Most hospices can provide other options for providing care in nursing homes or assisted living facilities when pain and symptoms cannot be managed at home.
  • 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 prepare for and what your loved one might experience.
  • Decide if you would prefer to have others with you at the time of death, or if you want to be alone with your loved one. Make a plan that ensures you can summon others on short notice.
  • Discuss your concerns about the impending death with someone who has experience and can talk with you about spiritual worries, the physical changes you might expect, or emotional anxiety about your loved one’s death.
  • Think about how you will manage the first days and weeks after the death but don’t make significant decisions about your future. Put it away for another day.
The Hard Decisions
Caregiving at the end of life includes making many difficult decisions. If the person who is ill can no longer make decisions for themselves, they will need to designate someone to lead that process. An advance directive or a timely discussion–before decisions become a matter of urgency–can make difficult decisions about end-of-life care a lot easier. Learn more about end-of-life care decision making here.
  • It’s not too late to create an advance directive if the one who is ill is mentally clear and can still communicate their wishes. You can read more about directives on the American Bar Association website, and download the forms from AARP’s website. Hospices can also provide this information.
  • Conversations are just as important as documents, so start talking and listening. [link to resource about Starting the Conversation]
  • in the months ahead because I want to help make sure that happens.”
  • Get expert guidance on treatment decisions as the disease progresses. Some 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.
Coping with Difficult Emotions

During such an intense, emotional time, you may experience feelings that are upsetting or surprising. Anger is a common reaction when life seems out of control; you may be angry at doctors, your relatives, or yourself. You may just be angry that life is so difficult right now, and perhaps you feel guilty about these feelings. Or you may have regrets about what you feel you have or have not done.
  • Find safe physical outlets for your anger; work out in a gym or make a place at home to harmlessly hit, rip or throw something. Feelings of anger are normal and as long as you are not hurting yourself or others, expressing these difficult feelings can be helpful.
  • Make a list of the things that make you feel guilty Look through the list, perhaps with a trusted friend or counselor, and try to 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.

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.

This information is adapted from Caregiving at Life's End: Facing the Challenges‚Äč by Johanna Turner was originally published on the website of the American Hospice Foundation. © American Hospice Foundation. All rights reserved.