The Dual Caregiver: Grief and Loss

 

Grief and loss – makes you think of death, right? It might remind you of a time you mourned for a loved one who passed away, or the feeling you get when you think of a friend, or family member that has passed.

Did you know that grief and loss are natural feelings that come with caregiving? I had no idea until about a year ago. I’m still trying to figure out why I didn’t realize this sooner. Why wasn’t ‘grief and loss’ being discussed in caregiver groups that I had attended? Why have I not heard about this topic in the caregiving community; a community that I have been part of for over eight years? Why hadn’t any prior counselors I’ve sought help from shared this crucial piece of information with me…until I met Andrea Cangiano, a therapist with the Southern Caregiver Resource Center in San Diego, CA.

The Time I First Met Andrea

Andrea Cangiano and Nikki Stephens

I found myself foggy and depressed sitting in a waiting room, getting ready to meet Andrea. This was my first official visit with her, in a counseling setting. I had met her previously at a committee meeting where I shared by personal experiences as a military caregiver and caregiver to my son with autism. Andrea wasn’t your average therapist, she specialized in caregiving and has worked with caregivers from all walks of life.

When I walked into the therapy session, Andrea’s raspy voice greeted me, accompanied by a huge smile. She was just as friendly as I remembered her from our committee meeting where we first met.

As soon as I sat down in front of Andrea we began talking about my caregiving journey. I just talked, never really knowing where to begin and where to end. The continual “word vomit” left me with little room for breath, unless it was to gasp for air, all in the hopes that she could decipher my verbal mess and offer some sort of feedback and support. I tried giving her a brief background on John (my veteran husband) and Kealan (my son with autism). I shared about all my kids and how stressed and overwhelmed I had become.

I tend to be that person who acts as though all is right within the world, when in reality I feel the world is crumbling before my very eyes. I’m not sure why I do this, but I always have. I have often associated it with my upbringing, which happens to be a whole other can of worms. I wonder if this is a coping mechanism I picked up long ago?

Back to my conversation with Andrea – I felt unusually safe with her. After I finally stopped talking for a moment for her to get a word in, she very nonchalantly mentioned, “Have you heard of grief and loss as it pertains to caregiving?”. I paused, confused by her statement. After a couple of moments of trying to process I asked, “What do you mean?”.

As Andrea began describing the feelings of grief and loss and providing examples, as well as talking about the states of grief and loss, I realized that in this very moment she had put a name to what I was feeling: sadness, anger, frustration and a sense of lack of control. All these feelings could be attributed to my grief and loss. I was angry that others’ lives are moving along as usual and mine wasn’t. Are all of my feelings associated with anger? All these years I had perceived these emotions as something else entirely. I had very naively confused grief and loss, as resentment.

I’ve always been aware of the ugliness of resentment and the many feelings; negative feelings that can evolve. For the last several years I had struggled with the idea that I resented my husband, but in actuality, it wasn’t resentment at all!

In that moment, the largest lump in my throat grew, the kind of massive lump that you get when you’ve been sideswiped by an emotional typhoon. I had my “Ah-Ha” moment. I was not resentful – I was grieving. Grieving the life that I thought my husband and I would have when we first married, just as I’m sure he does too.

Recognition

Within a few minutes I realized how relevant this topic of grief and loss was not only to my relationship with my husband, but to my son who is autistic. Often times I think about what differences there may be between Kealan and his twin brother, how their abilities would differ and how Kealan’s autism will affect them in the future. What does an adult with autism look like? Will Kealan marry? Will he ever experience the love that his father and I experience with one another?

I grieve for my other four children as well because of the challenges that come with living with someone with autism, as well as having a father that has a traumatic brain injury (TBI) and posttraumatic stress (PTS). Normal outings to the movie theatre or a day at an amusement park happens few and far between. It is something we are always working toward, but can be difficult for my son and husband.

In the past I always felt that if I were to express my sadness or grief in regards to what I feel, with what I face both with my son and husband, that it would be viewed as mean and unkind and not understanding. Who am I kidding? I still struggle with this. But Andrea has helped me realize that these are normal feelings that most caregivers experience and face at some point in their caregiving journey. This realization has been a relief, and quite empowering for me.

Tips for My Fellow Caregivers

Understanding that my misinterpretation between resentment and grief and loss, simply came from the idea of always associating grief and loss with death. And because I am caring for two people who are very much alive, those two simple terms did not correlate with me. It was kind of an oxymoron.

For my fellow caregivers, know that you can mourn for many different reasons and loss can be felt in many different ways. The degree of grief and loss that one might experience varies from person to person, as does the time experienced. I think it is important that we are able to name our grief, identify it and move forward with it.

Having the ability to speak openly about my feelings of loss with someone I trust has been much needed. Sharing with others what your grief looks or looked like and how you learned to cope and move forward offers support to the caregiving community, who may not have yet identified that feeling on their journey. Just know that at some point you will feel grief and loss on this journey, but always remember, you are not alone. For more information on the various types of grief and symptoms, I would suggestion checking out the Family Caregiver Alliance’s site on Grief and Loss.

Much love!
Nikki Stephens


Join me as I continue to share my journey as a “dual” caregiving to my wounded warrior and child with special needs. You can find my biography and links to blog post at: Nikki Stephens, “The Dual Caregiver.”

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