Caregiving or Caring? Connection Can Be Lost in a Maze of Tasks

Join SevenPonds each month as Tani Bahti, RN, CT, CHPN, offers practical on-hand guidance to demystify the dying process. As an RN since 1976, Tani has been working to empower families and healthcare professionals to have the best end-of-life experience possible both through education and the development of helpful tools and resources. As the current Director of Pathways, Tani is also the author of “Dying to Know, Straight talk about Death and Dying,” considered by SevenPonds as one of the most practical books on the topic. Founder Suzette Sherman says this is “the book I will have at the bedside of my dying parents some day, hopefully a very long time from now.” 

“I’m just a series of tasks. I used to be in charge and now I’m nothing.”

Denny whispered this to his visiting hospice nurse with a look of resignation on his face.

 Denny’s wife Sarah busied herself with her meticulous care of Denny. As his wife of 45 years and daily caregiver for the past two, she expertly but wordlessly provided a bed bath, changed his sheets, emptied the catheter bag, rolled him on his side to prevent bed sores and made sure he took his pills.

Sitting down for a rare moment, Sarah exclaimed, “Denny used to be the one I leaned on, but this illness changed everything. He thinks I should be here all the time to serve him and nothing seems to be good enough. I love him, but I’m tired. He doesn’t see or appreciate how hard I work. I’m just a nursemaid now.”

Sitting down for a rare moment, Sarah exclaimed, “Denny used to be the one I leaned on, but this illness changed everything.

When faced with the myriad of challenges and accompanying changes in end of life care, we are not often prepared for our new and perhaps unwanted or unexpected changes in roles. As couples or family members, we shared a life of many diverse experiences before sharing this final journey. When the current needs are overwhelming for caregiver and care receiver alike, those precious memories can often feel blurred and far removed. The person you were, the life you had, may now feel lost.

There are many losses associated with declining health – decreasing physical abilities, loss of role, independence, sexuality, finances, companionship, dreams and more. These losses can be expressed as guilt, anger, fear, frustration and sadness. Feeling such a perceived loss control, there is a desire to control something, and it may manifest as controlling behavior for either caregiver or receiver, adding further stress to both.

What we can control is our response. It’s helpful to acknowledge the losses and changes first by giving a voice to them:

“I am sad that we don’t get to travel anymore.”

“It’s hard for me to be to have to rely on you for everything.”

“I miss falling asleep in your arms.”

This isn’t about making someone feel guilty for their health, or lack of it. It’s about sharing our truths so we can be seen as the amazing human beings we are and have always been, and not just caregiver or receiver.

Sometimes it’s easier to start sharing your truths with an outsider: a good friend or hospice worker who does not judge your feelings. They can often help facilitate expressing your grief and loss with your loved one with the intention of improving awareness and compassionate communication.

Sometimes it’s easier to start sharing your truths with an outsider: a good friend or hospice worker who does not judge your feelings.

Second, take meaningful action. Set aside time each day to actively remember who you have been and still are to each other. Pull out a photo album and reminisce. Look deeply into each other’s eyes as you share your favorite memories or what you love most about each other. These actions help you see each other anew, with greater awareness and openness, as you give or receive care.

A caress of the face, a squeeze of the hand, a warm embrace can remind you that you are not alone on this journey. You are in it together as you have always been. These loving touches release hormones that enhance your sense of well-being, strengthen your immune system, decrease stress and most importantly, promote the intimate bonding that may have seemed to slip away.

Your lives and your value are not measured by your change in roles in your final months or days, but by the lifetime you have shared and continue to share. These new memories you are creating will one day be just as precious.

         “God gave us memories that we might have roses in December.” ~J. M. Barrie

Take a look at a copy of Tani’s book “Dying to Know, Straight talk about Death and Dying” to help demystify the process and offer words of wisdom on the many aspects of dying.