End of Life Care Issues and Challenges for Caregivers: Support Aging Loved Ones in Life and Death

end of life care issues and challengesThere’s a Buddhist saying that suggests: pain is inevitable, but suffering is optional. Every single one of us on this road of life will experience pain. We experience physical pain, emotional pain, and perhaps even spiritual pain—and our pain is a natural and generous teacher of life’s ups and downs. But we spend a lot more energy resisting it than we do allowing for the experiences and the discoveries within it. Our resistance and avoidance are what lead to suffering as we become cut off from our real experience of life, the light and the dark.

Death may be the ultimate source of suffering in our society, but often this suffering arises largely from our fear of death rather than the experience of death. So how can we embrace the journey toward death and all of its edges, including our own experiences as caregivers accompanying our loved ones during this time? We are in a great position to invite open and honest conversations with our aging loved ones and their families, to make space for end-of-life care issues and challenges, and to demystify the experience of dying.

What End-of-Life Care Issues and Challenges Do We Face as Caregivers?

When we’re caregivers, we deal with multiple layers of issues and challenges at our loved one’s end of life. We act as stewards and friends during their difficult journey, and we experience our own range of emotions and possibly overwhelming responsibilities. The following is a list of care issues and challenges common on one or more sides of an end-of-life journey:

  • Sorrow
  • Pain
  • Fear
  • Lack of control
  • Denial
  • Anger
  • Depression
  • Attachment
  • Loss
  • Grief
  • Regret
  • Family involvement
  • Difficult decisions

The end of life is unfamiliar territory where we face practical and emotional hurdles that often stretch us beyond our comfort zones. All of these feeling experiences are natural and normal, but the suffering comes when we try to push the authentic feelings away—or to hang onto them too tightly. Moving into and through the discomfort is part of the transition. And when we can allow and move through that discomfort, we’re also more open to the warm and beautiful experiences during this time where every moment is valuable and precious.

It’s so important that you remember to care for yourself and your needs during this challenging time. In this way, you’ll be better able to navigate your own responsibilities and emotions, and you’ll be better able to support your loved one as they travel the end-of-life path. Caregiver depression is common, as is caregiver stress and burnout. To help you cope with difficult feelings, you may find empowering support through individual or caregiver family therapy. You can also find local caregiver support groups or caregiver support groups online for compassionate community and advice from people who understand what you are going through.

How Can We Best Support Our Aging Loved Ones on this End-of-Life Path?

If you are a caregiver for an older adult, you’ve probably come to know them really well. You may even be more familiar with their preferences, their ways of experiencing things, and their pains and challenges than family members and friends who haven’t spent as much time with them recently. This makes you an important ally and advocate to help pave the way for their comforts and wishes on this road toward the end of life. You can help to give voice to their questions, concerns, and directives for medical professionals and other special service providers. You can also help them express their pain and need for relief because some individuals won’t speak up about their physical discomfort in an unfamiliar or intimidating environment.

Thanks to the trusting relationship you have built with your loved one, you can help them engage in these important—if challenging—conversations that bear on their course of care and quality of life. It’s important that they have someone they feel very comfortable talking to about vulnerable subjects. They may not bring these subjects up on their own, so you can help them navigate difficult but vital topics—such as the medical treatment options they do and don’t want and how and where they want to spend their final days or hours—while giving space and attention to their full range of thoughts and feelings.

You can also help to normalize and welcome their feelings—the painful ones too. It can even help to share some of your own challenging feelings with them, showing how much you care and that they are not alone in their pain and sorrow. At the same time, you can guide their attention to the special, heartwarming moments they are moving through, such as family and community support, remembrance of their favorite life memories, and the beauty of nature and the seasonal transitions around them.

We are each at different stages in our journeys toward the end of life, but we do all share in that same journey. We can support and empower each other along the way. As caregivers, our capacity to support and empower aging adults is especially great as we help them to realize how special they are, how special their lives have been, and how rich and full their remaining moments can be. If you’re wondering where to start, go ahead and ask your aging loved one directly about what matters to them and be there to listen, honor, and support them.

Are you looking for support during end-of-life care challenges? Institute on Aging offers programs, services, and other resources for older adults, their family members, and caregivers to assist with home care support, health care needs, and grief support. To find out more, give us a call at 415-750-4111.

 

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Dr. Patrick Arbore

Dr. Patrick Arbore, ED.d, is the Director and Founder of the Center for Elderly Suicide Prevention and Grief Related Services. A nationally recognized expert on suicide and a powerful advocate for mental health services for older adults, Dr. Arbore is a role model for living life with true compassion. He's an experienced presenter and has held seminars and workshops on topics relevant to older adults’ mental health.

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