When Caregiving Hurts: A Counselor By Tia Amdurer, LPC on 3/17/20 - 12:46 PM

As a therapist in private practice, along with having five years’ experience as a bereavement coordinator in hospice, I can attest to the complexities around end-of-life caregiving, both for the family and the professional.

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Whether the loved one is at home or in a skilled setting, the burden of care can be overwhelming. Regular folks are suddenly confronted with medical decision-making, legal considerations, financial questions, not to mention the actual day-to-day interaction with the loved one who is dying. To add to that, the caregiver will likely have a job, family and other obligations.

When they are overwhelmed by the physical and emotional toll of their responsibilities, caregivers often show signs of anticipatory grief: anger at the exhaustion, frustration at the never-ending demands, shame for wishing it were all over already, helplessness at not being sure what they should be doing and sadness at the way time is running out.

How do we begin to work with these clients?

Making Sense, Making Ritual

As an existentialist, my focus is around making sense of that which is unknowable. I find one of the most effective ways to help caregivers to find meaning during this time is to uncover significant joys, rituals and mementos. I have found that singing the songs of youth, making meals that bring back memories, or even sitting together watching birds to be ways caregivers with whom I have worked are able to connect with their loved one at the end of life, and that can help them move towards a place of acceptance after the death.

During the last weeks of my dad’s life, we read through a well-loved book of bad and bawdy jokes from the vaudeville years. Even when he could no longer understand the meaning, he would laugh at the inflections of his daughters’ voices, his muscle memory recalling something deeper. Years later, I keep that book.

Once death has taken place, the transitional period during which the loved one shifts from physical to spiritual presence is an important phase of healing¹. Rituals have been used effectively for years in religious and cultural ceremonies and by therapists who understand that creating unique ways to honor the departed aids the grieving process. So, recognizing the unique characteristics of the individual while they are living and highlighting these attributes and delights can help to make this transition easier for the caregiver following the loved one’s death.

For intuitive clinicians, this is a fantastic opportunity to think outside the box with the client. Tattoos, animal totems, reimagined articles of clothing, and connection through natural elements are frequently utilized by clients with whom I have worked, but it doesn’t need to stop there.

One client struggled with letting her father go until we created a ritual around visiting their favorite golf course, where she buried some of his golf balls. Unorthodox to be sure, but it helped her immensely.

Dealing with Dementia

The cruelty of dementia has no bounds; robbing the family of a loved one inch by inch before the body has time to react. It is a harsh twist of nature, and it can be very helpful to recommend a support group for those struggling to come to terms with this very personal and unjust theft.

When counseling a caregiver whose loved one’s deterioration is both painful and frustrating, I have found it important to help them to acknowledge that they are no longer dealing with the lucid and logical person they once knew. This is often the hardest part for these caregivers: accepting that logic is no longer accessible, nor is the person that they love and who loved them. The caregiver cannot make them remember, change their newfound (mis)beliefs, help them reason or provide assurances that relieve their anxiety.

The caregiver’s role becomes one of simplifying, calming, redirecting and comforting. Many elderly with dementia understand in the beginning what is being lost, and the frustration and fear is obvious. The caregiver can be reminded to acknowledge the pain, recognize the magnitude of their loss and just be present.

Some form of suspicion or, at the extreme, paranoia, is frequent: Why did you take my car keys? Who's paying for this apartment? Why can't I have my checkbook? That isn't my signature on that document! Where am I? Where is my husband - what have you done with him? As heart-breaking as this can be, the caregiver needs to intentionally practice patience and calm in the face of the storm.

I have suggested to these clients that they join in the world that is real for their loved one; since they simply cannot tell reality from fanciful thinking, dreams or stories they've been told, asking them to recall what the loved one cannot recall often causes great embarrassment and frustration.

It may be helpful for caregivers and their loved ones to remember some tips for better communication:

  • Memory may be better at certain times of the day; later in the afternoon, confusion may increase, a phase called "sundowning"
  • Talk about broad topics, not specifics
  • Phrase questions in a way that they don't feel anxious if they don't know the answer
  • Don't correct or contradict their memories, even when they are wrong; just join them in their world
  • Engage with touch, sight and body language
  • The loved one may not be able to follow stories or movie plots; consider reading simple, shorter stories
This kind of psychoeducation is important for those who are going through this lonely journey. As therapists, we must be able to validate and normalize with the client. Competency in serving clients – both family members or professionals – means knowing about the dying process and being able to walk alongside them during this transition. Being aware of the types of dementia and their different impacts on individuals can help bring understanding to bewildered caregivers.

While one elder was in the latter stages of Alzheimer’s she would continually try to “elope” (leave the secured facility without permission). Her daughter, in an effort to find humor in an otherwise dreadful situation, took to lovingly referring to her as “Houdini.”

Boundaries and Self-Care

Caregivers who are anticipating the demise of their loved one experience the full range of emotions, from sadness to guilt to rage. In my work with caregivers and their dying, I have found that no matter the dynamics of the relationship, guilt and self-recrimination are real. Most of these clients I serve replay the “If only I had…” mantra after the death; this has been the norm for me. The idea of having to balance self-care with the real needs of the dying is hard and there is no absolute.

In the course of my own clinical experience with these clients, the need to deal with caregiver burn-out is often great and it becomes critical to remind them that we cannot pour from an empty bucket – if they have nothing left to give, they cannot truly help. Recharging the batteries enables others outside of the immediate sphere of loss to relieve the caregiver or provide assistance. As counter-intuitive as this seems, asking for specific requests can provide a way for those in the life of the caregiver to be and feel useful rather than burdened and helpless. Suggesting the client make a list of chores or needed help can stave off burnout and help the client to maintain some sort of emotional and physical balance. Counselors should encourage reaching out whenever possible to support services such as neighbors, family, friends, religious or civic groups.

When my young cousin was dying of cancer, her parents and husband were with her every day. As the illness had impacted her speech, she was difficult to understand, so visiting could be anxiety-producing. Her lasting gift to her friends, however, was asking for certain foods – bringing her a smoothie, mashed potatoes, ice cream – made us all feel that we had contributed to her comfort.

Final Thoughts

Hospice work became a passion for me when I sat with my cousin in her final hours; I came to understand that there was a great honor and privilege in companioning the dying and their family members at the end of life. As I learned through that work and my own family’s losses, the medical community provides much care to the dying, but not so much support for the caregivers. I was inspired to write Take My Hand: The Caregiver’s Journey, after following blog posts by a friend caregiving for her mother. Her experiences underscored that caregiving can be the loneliest job and reaching out provides comfort.

The gifts I have gleaned from this soulful work have been a true blessing of sharing in moments of insight, joy and incredible grief. To hear the stories of youth and the weariness of decline has enabled me to experience the full scope of life.

Wolfelt, A. (2015). The paradoxes of mourning: Healing your grief with three forgotten truths. Ft. Collins, CO: Companion Press.  

File under: The Art of Psychotherapy