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Navigating the Ambiguous Losses That Accompany Caregiving

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Being a care partner to a person with a chronic disease or illness can be a meaningful and rewarding job. However, it can also bring feelings of loss, both big and small. Ambiguous loss is the term for those different types of losses care partners and those living with a chronic disease experience along the way.

Care partners face many challenges while taking care of their loved one. Often, the caregiving relationship happens over many years or even decades for progressive diseases like Parkinson’s disease (PD) that worsen over time.

Even though a loved one is alive and physically present, you may find yourself grieving the loss of your relationship as it used to be, the loss of an anticipated future, or the change in your expectations. Mourning and grieving the losses that occur along the way is natural and healthy.

The five stages of grief are denial, anger, depression, bargaining, and acceptance. These stages, experienced in no particular order and for no set time, can also be experienced by care partners and people with chronic illnesses. The lines are often blurred when grieving for someone who is still physically present.

However, the five stages of grief are still applicable. Since the losses are on a smaller scale, they may be harder to recognize as the root of the feelings of sadness and grief.

Ambiguous Loss and Caregiving

In the Parkinson’s Foundation Care Partner Program: Building a Care Partnership, care partner Angela discusses the loss she felt when her husband with Parkinson’s could no longer do the tasks he used to be able to do — from handling finances and planning their retirement to helping care for their child. As his Parkinson’s progressed, he was still present with the family, but Angela could no longer lean on him in the same way. She found new ways to keep up with life, but it was difficult, and she missed the way her marriage used to be.

Here are some ways you could experience ambiguous losses in a caregiving relationship:

  • Mourning the retirement that you planned with your spouse before their diagnosis.
  • Missing special times together when your loved one would complete tasks they can no longer do, like crossword puzzles with their morning coffee.
  • Not being able to witness your parent become an involved grandparent the way you imagined.
  • Feeling burdened by the tasks and chores you’ve taken on now that your partner is unable to complete them.
  • Longing to participate in “regular activities,” such as weekly walks or Friday night movies, without additional planning and coordinating.
  • Missing the connection (romantic, familial, or friendship) that you used to have with your loved one.

At the same time, care partners may be experiencing ambiguous loss, it is likely your loved one is also struggling to cope with the changes, too. Whether battling a long-term disease or trying to maintain a level of independence, their body cannot keep up, your loved one is probably experiencing their own ambiguous losses.

It can be scary to acknowledge these feelings, but talking about them is helpful for both of you. Mutual understanding between parties within the care partnership creates the space for a meaningful and beneficial relationship to bloom.

“I married my best friend, who I was madly in love with (and I still love), but he’s not the person he used to be. I don’t really like to think about it because It’s painful and it’s hard and I miss him – I miss who he used to be. I feel very lonely. The person that’s there now is not the person I married.”

– Robin, Parkinson’s disease care partner for 14 years

Role Adjustments in Care Partnerships

While your loved one’s diagnosis probably changed your life overnight, care partner is a role and an identity that you grow into. As a care partner, you and your loved one must muddle through a transition period together.

For some, the transition into a care partner role is subtle and happens over time. For others, disease symptoms might change quickly, not providing much time for the loved one and the care partner to adjust to their new role and adapt to the new responsibilities. In both situations, the change occurring in the relationship and within each of you can feel overwhelming, disorienting, and unsettling.

Though it may not feel like it, you as a care partner can determine how you view your evolving role. It may be helpful to think about the adjustments you’ll be making in two categories: logistical and interpersonal adjustments.

Logistical Adjustments are more practical:

• You may need to take on more of the household and financial management tasks if your loved one is experiencing cognitive decline.
• You may need to take on more hands-on tasks like cooking or driving if your loved one’s physical abilities decline.

Interpersonal adjustments are more relational:

• You may notice that your role within the relationship is shifting, sometimes related to power dynamics. This could also be due to any personality changes that can come with some diseases or illnesses.
• You may find that your relational needs aren’t being met. In a marriage or romantic partnership, this could be emotional, physical or sexual.

Think about how these adjustments may impact daily life and the bigger picture. If you want to ensure that you and your loved one can understand and maintain your own identity in this care partnership, it will have to be an intentional decision.

“For me, the biggest challenge of caregiving has been changing from care partnering to really becoming full-time. In the last 15 years, I’ve learned that I had to give up a lot of things. It wasn’t really a major challenge, it’s just what was needed.”

Lyle, Parkinson’s disease care partner for 15 years

Living Well Through Ambiguous Loss

When experiencing ambiguous loss as a care partner or a person with a chronic illness or disease, a good first step is to accept that your loved one has changed and you are grieving that change. Accepting a hard reality is the only way to move forward.

Tips that can help ease the burden of ambiguous loss:

• Acknowledge your right to feel emotionally off-balance. Recognize the hidden grief component of your anger, anxiety, guilt, and depression.
• Expect adaptation to, but not resolution of, your grief. Accept it and seek out someone who understands it.
• Be kind to yourself. Remember you are experiencing normal reactions to abnormal circumstances.
• Know that it is okay to grieve the losses you and your loved one may experience. Research shows that writing (in a journal or other format) can help you work through your feelings and emotions. What causes you to mourn? Where do you find satisfaction and pleasure?

When experiencing ambiguous losses, ask yourself these key questions:

  • What can you do to accept your loved one as they are right now?
  • How can you resist the urge to compare past versions of them to who they are today?
  • What moments still make us laugh and smile together?

Honoring Yourself and Your Loved One as Individuals

Individuality is important for the care partner and the person with the disease. Prioritizing the little things that make you feel like yourself can help you to maintain aspects of your identity that would otherwise fade away. This can increase overall contentment with life, potentially decreasing resentment and burnout in the care partner relationship.

For instance, a care partner might take on more household chores and responsibilities but still honors their need to volunteer with their local church and maintain a standing coffee date with a friend. If necessary, ask a friend or family member to spend time with your loved one to allow for your needs to be met.

Finding Support

You do not have to be on your own in the journey of ambiguous loss. Connection with other care partners in similar situations can show you that your feelings are completely normal.

“We lived in a very rural area… so I started a caregiver support group in our area. It has been so fantastic to be able to share what we had difficulties with. If one person goes through something, they pass on that knowledge. That’s why support groups are so, so important — they help you get through the trials and tribulations while holding your head up high.”

Lori, Parkinson’s disease care partner for 17 years

The Parkinson’s Foundation works to make life better for everyone whose life is impacted by Parkinson’s. Care partners and loved ones of people with PD are often overlooked, but anyone caring for someone with Parkinson’s knows that PD is experienced by the entire family.

To address the needs of care partners, the Parkinson’s Foundation offers a series of self-paced online courses composed of conversations with care partners, lessons from health professionals, self-reflection prompts, and more through the free Care Partner Program: Building a Care Partnership. Care partners can also utilize a myriad of articles and tips at Parkinson.org/Caregiving.

Sign up for free, self-paced courses designed for caregivers through the Parkinson’s Foundation Care Partner Program today! For answers to your Parkinson’s questions, contact the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636).

Source: Parkinson’s Foundation

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