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The Emotional Challenges of End-of-Life Family Caregivers

Take time together to reminisce, review life history and reflect on your relationship

close up of a woman holding the hand of her dad who is in a hospital bed

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There were clear signs during her last two weeks of life that my mother's long decline from vascular dementia was ending. She had been slowly losing physical functioning for the previous year, but she now seemed to be falling apart all at once. She could no longer hold a fork to feed herself. Her face sagged, so she was almost unrecognizable. When she tried to speak, she couldn't find even common words. Though I had spent many years as a psychologist helping family caregivers anticipate the deaths of their loved ones, I couldn't or wouldn't grasp what was happening to my mother. I'm sure I wasn't emotionally ready. We see what we want or only what we can handle.

I would have hoped the health care professionals at her nursing home would have gently clued me in, but her nurse practitioner seemed as puzzled as I was. She ordered tests for a urinary tract infection and a physical therapy reevaluation without realizing my mother's death was near.

And then I received a call from the nursing home while I was on a business trip five hours away that my mother was “actively dying.” I drove as fast as I could across the state to get there before my mother passed. During that long ride, I rehearsed to myself the things I wanted to say to her but had long put off: I love you. I'm sorry we argued so much. Thank you for all you did for me. Goodbye.

By the time I arrived in her room, she was still alive and breathing heavily, but her eyes were closed. She had lost consciousness and was barely responsive. I said in a loud voice what I needed to say, trying to reach her, but, to my everlasting regret, have never been sure she heard or understood me.

Family caregivers are faced with many tasks as the receivers of their care get close to the end of their lives — keeping them comfortable and free of pain, providing reassurance and sometimes allaying fears. But with the limited time available, caregivers should also think of their own needs. Even if they are afraid to think about death or worry about upsetting the person who's dying, they should attempt to have the conversations they've always wanted to have, and to ask the questions they've always wondered about. Missing that chance now will only make them sorry later.

How can family caregivers sensitively approach these end-of-life challenges? Here are some ideas.

Learn how much time is left

Asking health care professionals about the likely timing of a care receiver's death can be frustrating. They, too, sometimes have difficulty seeing that a longtime patient has gone from being chronically to terminally ill. It isn't unusual for them to respond to family caregiver requests for predictions by saying, “I don't have a crystal ball."

While that may be the case, they do have the knowledge and experience to offer guidance — if granted broad latitude in their answers. Ask doctors and nurses, “I don't expect you to be able to see the future with perfect clarity, but can you please give me your best educated guess?” They will give you what you've asked for — a rough estimate of how much time may be remaining.

Deepen the conversation

Family history is irretrievably lost with the death of every elder. Now is the time for caregivers to seek historical information by asking about weddings and distant, dispersed cousins and how the family persevered through the Depression and World War II. Unless a parent has severe cognitive impairments, her long-term memory should be intact enough to enable her to answer these questions. This is a time for deep listening — or perhaps even recording the conversation for others to learn from in the years ahead. It's also a time to ask a parent to reflect on the joys and disappointments of her own life by asking: Has your life turned out how you thought it would when you were young? What are the experiences or achievements for which you're most grateful or proud? What do you want others to remember about you?

Practice gratitude

There's no requirement that you tell a parent she's been the best mom ever if that's not how you feel. But it is important to put into words what she has given you in your life that has positively shaped you. Your reflection on your relationship with that parent could be a long-rehearsed and eloquent speech or a simple “thank you.” Saying something heartfelt will temper the sadness of the impending loss and brighten your future.

Barry J. Jacobs, a clinical psychologist, family therapist and healthcare consultant, is the co-author of Love and Meaning After 50: The 10 Challenges to Great Relationships — and How to Overcome Them and AARP Meditations for Caregivers (Da Capo, 2016). Follow him on Twitter and Facebook.

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