Carepartners and Bereavement

For many people, being a carepartner or caregiver is a meaningful and fulfilling experience. The carepartner experience can also be emotionally challenging as, at one point or another, a carepartner may experience grief or bereavement. Grief is a natural reaction to loss that manifests itself emotionally, spiritually or physically. Bereavement – the period of sadness that follows a death, during which grief is experienced – presents its own set of challenges.

No matter what type of grief you are experiencing, it is important not to forget about yourself,” says Courtney Hanna, Registered Clinical Counsellor and Parkinson Society British Columbia (PSBC) staff member.

Too often, people may be experiencing grief and not acknowledge it. Recognizing the emotions you are experiencing can help you cope. It is also important to understand that grief can come in waves. You may feel fine one moment and be overcome with emotion the next, but this is a natural part of the grieving process. You can choose to suppress your feelings by pushing against the waves of grief; however, this will make those waves stronger and leave you feeling weak. Alternatively, if you allow yourself to ride the waves of grief, those feelings of suffering will pass much quicker, leaving you feeling stronger and more in control of your emotions.

Types of Loss

Peoples’ abilities often change throughout the progression of a chronic illness. As a carepartner for someone with Parkinson’s disease, you may experience different types of losses, including a loss of independence or control of the future as you had planned. With loss often comes a feeling of grief which can feel overwhelming and may be difficult to manage. Although it can seem challenging, becoming aware of your feelings rather than ignoring them will allow you to cope with them much better. The following descriptions of the various types of loss may help you understand your experience.

Ambiguous loss: One type of loss you may experience is ambiguous loss – the experience of being close to someone who is present, but who may not be “there” in the way they once were. This is typically experienced when an individual is living with dementia, brain injury or stroke. Managing ambiguous loss can be particularly challenging, especially since the individual you are caring for may have moments when their symptoms are not as prominent. In the words of Pauline Boss, Ph. D., “With ambiguous loss, there is no closure; the challenge is to learn how to live with the ambiguity” (Boss, n.d.).
Anticipatory grief: Anticipatory grief is the sense of loss you experience long before anyone passes away – in other words, the grief you are experiencing is due to the loss of your loved one’s former self. For instance, changes in speech or a diminished facial expression can make the individual you are caring for seem different. Anticipatory grief can be overwhelming and may be something you experience daily for years. While it can serve to help us emotionally prepare for the inevitable, you may experience guilt or shame for experiencing it, since your loved one is still with you.
Bereavement: Recent research has shown that intense grieving can last anywhere from three months to two years or longer. After a sudden death, you may experience denial, shock, confusion and pain. It is important to remember that grief is an individual process. Some people may want to share their experience of grief, while others may isolate themselves or grieve independently.

Grief Symptoms

Grief can manifest itself in a number of ways, taking a toll on your physical, social and emotional self. Physically, you may notice a decrease in energy, headaches and disturbed sleeping or eating patterns. Socially, you may feel detached, or want to be alone. Emotionally, you may feel everything from intense sadness, to irritability or even euphoria.

Effects of Bereavement

During the bereavement process, you will likely experience many symptoms similar to grief. However, due to the specific complexities of losing a loved one, you may experience additional effects. You may become worried about your own physical health, and develop symptoms similar to those of your loved one. You may experience intense anger – this includes anger at your loved one or the medical system. Some people face spiritual challenges related to the loss and a perceived lack of life’s meaning. These are all seemingly logical effects of losing a loved one. However, you may also experience some emotions and thoughts that surprise you. The following is a brief list of bereavement effects that are quite common:

Believing that you can see, hear or feel the deceased • Inability to remember your loved one
A preoccupation with thoughts of your loved one
Treasuring your loved one’s belongings, or objects that represent your relationship with them
Vivid dreams about your loved one (Recover-from-grief.com, n.d.)

Bereavement is a challenging process that may be overwhelming at times. You can take some comfort in knowing that it is experienced by many, and although the feelings and symptoms may be disturbing, it is possible to emerge with a full life and stable emotional health. “It is important to remember that there is no right way to grieve,” says Courtney, “being patient and compassionate with yourself can provide you with the space and time you need to deal with these emotions.”

You are not alone

Some people may look inwards during the grief or bereavement process – journaling, meditation and self-reflection may be helpful ways for you to manage your grief. However, it may also be helpful to look for external supports. At PSBC, we noticed a trend; carepartners became a part of the Parkinson’s community while a loved one was ill, but felt socially isolated when the loved one passed. This is part of why we – alongside our partners at Pacific Parkinson’s Research Centre – established the bereavement support group for anyone affected by Parkinson’s disease who has recently lost a loved one. In addition to this group, there are dozens of support groups for care partners across the province.

Sources

Boss, Pauline. (n.d.). About Ambiguous Loss: why we all need to understand it. Retrieved from http://www.ambiguousloss.com/about_ambiguous_loss.php

Family Caregiver Alliance. (1996). Grief and Loss. Retrieved from https://www.caregiver.org/grief-and-loss

Recover-from-grief.com. (n.d.). Effects of bereavement. Retrieved from http://www.recover-from-grief.com/effectsof-bereavement.html

This content was published in the Fall 2016 edition of our quarterly magazine, Viewpoints. The content was accurate as of this publication date.

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