Carepartner Ambiguous Loss and Frozen Grief

Many find it challenging to balance their role as a carepartner with being a spouse, family member, or friend. Even more challenging is the transition in their relationship as the disease progresses. Every stage of Parkinson’s will require adaptation and acceptance, as carepartners navigate their ever-evolving roles. As a disease with no cure, and no way to accurately predict its progression, Parkinson’s can present a sense of ongoing loss. Carepartners are faced with the knowledge that their loved one will inevitably decline over time, and require increasing levels of care. For many, this uncertainty about the future can be difficult to accept.

Ongoing Losses

The incremental losses associated with Parkinson’s can be a continual presence in the life of a carepartner. These losses may be invisible and difficult to put into words, but they are often related to feelings associated with knowing that the person they care for is no longer the person they used to be. Some of the examples of these losses include:

• the loss of their loved one’s abilities, independence, and former roles
• changes in their loved one’s identity, interests, and motivations — as well as their own
• decreasing leisure time, and time spent doing shared activities with their loved one
• diminishing opportunities for travel, or spontaneous life changes (eg. moving to a new city, getting a new job, etc.)

It can be difficult to recognize each incremental loss as a carepartner. For example, your loved one being prescribed a new medication may mean additional time spent tracking symptoms and side effects, and more frequent visits to the doctor’s office. These new responsibilities can slowly take away from the carepartner’s independence and leisure, one hour at a time.

Often, these losses are realized at times of heightened stress, or at the point of burnout. This is why learning to identify ambiguous loss is an important part of managing your role as a carepartner.

Ambiguous Loss

The term ‘ambiguous loss’ was coined by Dr. Pauline Boss, who has studied family stress and grief since the 1970s. As the pioneering theorist in her field, she defined two types of ambiguous loss (Frequently Asked Questions, n.d.):

• Type one occurs when there is a physical absence, with a psychological presence.
• Type two occurs when there is a psychological absence, with a physical presence.

Parkinson’s may present the challenge of both types of ambiguous loss. For example, the first type may be experienced by carepartners whose loved ones with Parkinson’s are hospitalized, in assisted living, or in hospice care. The second type can be experienced in cases where the person with Parkinson’s has gone through cognitive changes, has dementia, or whose self-identity or personality has changed significantly as a result of their journey with the disease.

The Effects of Ambiguous Loss

A natural response to loss is to grieve, but grief can be complicated when it is not acknowledged or addressed. The grieving process naturally follows a loss of life, and those experiencing the loss can cope by externalizing their grief through mourning. In ambiguous loss, carepartners can be immobilized and face mental health problems as a result of unvalidated, and repressed grief, or grief which has simply not been recognized. Boss (1999) describes this as a state of ‘frozen grief.’ Some of the possible manifestations of ambiguous loss and frozen grief include (McGeary et al., 2018):

• anxiety, insecurity, and anxious attachment
• a sense of hopelessness and helplessness
• identity confusion (i.e. wondering “who am I now?”)
• ambivalence (i.e. conflicting feelings toward your loved one)

Coping with Ambiguous Loss

Ambiguous loss requires a carepartner to grieve the loss of someone who is still alive. This is considered a ‘disenfranchised grief,’ which is not widely accepted, normalized, or understood (Thelen, 2007). Carepartners can resolve disenfranchised and frozen grief by recognizing, acknowledging, and validating their loss (Alzheimer Society, 2013).

Recognizing

To recognize ambiguous loss, it can be helpful to practice introspection (self-observation) during stressful times. If you are experiencing sadness or depression as a result of your caring role, it may be a direct manifestation of your grief.

Although it may be difficult, try taking time to evaluate your relationship with your loved one, and how it makes you feel. Sometimes, changes in your mood, stress, and overall mental wellness can be an indication of an unresolved issues such as frozen grief.

Acknowledging

If you find yourself feeling sad or depressed, it is natural to try making sense of your emotions. Naming the problem of ambiguous loss is the first step in coping with this issue. To acknowledge ambiguous loss, it can help to break it down by naming each individual loss you have experienced.

Consider the changes in your identity, roles, relationships, and responsibilities, and try to acknowledge the individual losses that are associated with these changes. For example, if you spend less leisure time with your loved one, you may look to acknowledge the loss of your previous shared interests and hobbies, and consider the ways this loss has impacted your relationship. No matter how small or insignificant a loss may appear, remember that each is part of the ongoing experience of ambiguous loss.

Validating

Even once you have recognized the feelings of grief and loss, and acknowledged these experiences, it can be difficult to begin the coping process. In order to heal, it is crucial to accept your grief and loss as valid, important, and worthy of attention.

In some cases, carepartners may be conflicted when faced with grief for an ambiguous loss; it can feel wrong to mourn for someone who is still alive. In fact, the process of grieving for such a loss is different from mourning, and should be acknowledged as such. The means of coping with disenfranchised grief may be more complex, particularly because they often involve the person for whom you are caring.

To validate your grief and loss, it is important to discuss it with others. Sometimes, it may be necessary to consult a healthcare professional. To determine what kind of support you need, try using your emotions as a benchmark. Consider the following:

• If you are experiencing feelings of sadness, you may benefit from peer connections, social support, and shared activities with friends and loved ones. Sadness can be defined by mild grieving and unhappiness which does not significantly impact your functioning.
• If you are experiencing depression, you should consult a clinician, counsellor, psychologist, or family therapist. Depression can be defined as a sadness that is so deep that impairs your own function, and makes it difficult to care for others.

Accepting Ambiguity

Another way to validate your grief and loss is to change the way you think about these experiences. Dialectical thinking, also known as “Both-And Thinking,” may be beneficial (McGeary et al.). This type of thinking helps to break the habit of “Either/Or“ thinking (which is absolute and binary), and prompts you to consider that you may be dealing with two things at once. For example, rather than “my partner is still here,” consider the thought, “my partner is both gone and here”. Boss (2011) gives other examples of how to frame your thoughts with Both-And thinking:

• “I take care of both him and myself.”
• “I am both a carepartner and a person with my own needs.”
• “I both wish it was over and wish that my loved one keeps on living.”
• “I am both sad about my lost hopes and dreams, and happy about some new hopes and dreams.”

Both-And thinking is a valuable tool for processing the doubt and uncertainty that accompanies ambiguous loss and disenfranchised grief. It allows one to accept contradictions and give up the sense of control over their experiences. By welcoming paradoxical thoughts, it becomes easier to see ambiguity as natural, and develop a trust in the unknown (Boss, 2011).

Sources

Alzheimer Society of Canada (2013). Ambiguous Loss and Grief: A Resource for Health-Care Providers. https://bit.ly/2HXOy4m 

Boss, Pauline (1999). Ambiguous loss: Learning to live with unresolved grief. Harvard University Press.

Boss, Pauline (2011). Loving Someone Who Has Dementia: How to find hope while coping with stress and grief. New York: Jossey-Bass.

Frequently Asked Questions (n.d.). Ambiguous Loss. College of Education and Human Development, University of Minnesota Department of Family Social Science. www.ambiguousloss.com/about/faq

McGeary, Lana K., and O’Brien, S. (2018). Ambiguous Loss and Frozen Sorrow. Canadian Hospice Palliative Care Conference. Presentation. https://conference.chpca.net/wp-content/uploads/2018/06/Ambiguous-loss-Ottawa-2018-v.6.pdf

Thelen, Veronica. (August 2007). Disenfranchised Grief. Mental Health Matters. 4(10). Gratiot Medical Center: An Affiliate of MidMichigan Health.

This content was published in the Spring 2020 edition of our quarterly magazine, Viewpoints. The content was accurate as of this publication date.