Stages of Caregiving: What to expect.

The caregiver is the sole survivor of the stroke and needs to take on both roles in the relationship. Most are familiar with the stages of grief identified by Kubler-Ross, denial, anger, bargaining, depression, and acceptance. The grief felt is the loss of your planned future and your loved ones’ abilities. Each phase is challenging, but part of the road to recovery.

The stages I experienced as caregiver were confusion, fear/anger, loneliness, depression, and realization. During the initial weeks in the hospital, I felt confusion and fear based on that day’s challenges or triumphs. In time, I realized that the goal is to identify where you are and to embrace that stage.

What are the stages of the caregivers journey?

Confusion:

Confusion is the initial phase for the caregiver.  I was confused and unclear of the extent of the stroke and what the potential outcome could be. Each day is a rollercoaster of emotions, anger, fear, exhaustion. I was overwhelmed but wanting answers. Most of the answers were of the “wait and see” variety from the health professionals and the “God only gives you what you can handle” or “I know someone who had a terrible stroke and is better than before” variety from well-meaning friends and family. But often, all you hear is “Blah, Blah, Blah.”

As a nurse, I really didn’t expect to be confused. I knew the aspects of the medical issues related to a stroke, but not the response I would have as a spouse. My mind raced with all my nursing knowledge, nursing friends shared advice and the dreaded internet of information. As a take-charge type, I became frustrated because all I could do was sit back and watch our life fall apart. 

Fear and Anger

Fear and anger was the stage when I understood what had happened, but I now begin to worry and think “How can I handle this?” During this phase, the caregiver handles every aspect of their loved one’s life, making all the decisions alone. All the “what ifs” will rear their ugly heads. What if he dies? What if he survives? And how can I ever live without this person?

Once I passed through the confusion phase and had some idea what I was dealing with, my nursing background and the world of “what ifs’” entered the picture. I still didn’t know where we would be in a year poststroke, but I knew enough that it would not be a straightforward journey for either of us.nd what could be improved upon.

Loneliness and Depression

I had always thought of loneliness as a sadness due to lack of friends or company. So, how could I experience loneliness when surrounded by family, friends, and healthcare providers for many weeks and now home with Rick daily.  I learned being lonely, while never alone, is a unique type of loneliness. The entire world is flying past you with the typical day-to-day issues you thought were so important until life priorities changed. No longer did I care if he remembered a task that I had asked him to do a million times, or that he was not as attentive as other spouses seemed to be. He was my world, and I was losing him. 

            When  asked how I was doing, I was at a loss for words. I felt I had no right to complain or feel sorry for myself. He had the stroke, and I was healthy. The answer would always be: “I’m good, just a little tired. I just need to count my blessings.”  With this response, I thought that I was protecting myself from dealing with my feelings, but I was pushing others away and closing doors of support.  Everyone deals with this stage differently, but I think the loneliness while never alone is universal when a caregiver.

Realization

More and more days were hopeful for me and less were filled with depression and loneliness, this is when I finally came to terms with the life we will now have. The stroke was devastating for both of us and after a year, Rick’s recovery had plateaued.  Over a period of about three months, we both became aware that his physical and cognitive limitations were not improving and that we were beginning to adapt our lives around those.  The realization of what our future would hold happened for me at the one year follow-up medical appointment.

When the doctor shared, “He is progressing slowly, but he is moving in the right direction. I can see so much improvement from last year.” The confirmation from a medical professional that we were no longer taking steps backward provided comfort to us.  We understood that improvements could happen beyond this point, but the likelihood that they would was low.  The effects of the stroke and the changes in his overall health still needed to be addressed, but I no longer felt hopeless. I started to believe that we could work through any upcoming challenges.

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