Grief for me is an odd emotion. I associate grief with a death of a loved one. We all have experienced some form of this type of grief. The shock of the death, the funeral arrangements and the time needed to heal form the pain of losing this individual.

When a loved one experiences a stroke, both the survivor and the Caregiver experience grief. The survivor’s grief can be different than the caregivers, but both are real and painful. This week, I will only be focusing on the caregiver side of grief. Frequently, the caregiver is told you are so strong, so you hide your grief. Many times, when feeling depressed/sad, it is could very well be a symptom of the grief that you are experiencing.

When my doctor shared that I was experiencing grief, I was a little taken aback. My husband survived his stroke, and I should be grateful not sad. Yet, I was sad. As I journaled that evening, I had to list what I was grieving. Everyone’s list is different, but I am happy to share mine (hopefully that will help you)

My marriage has changed and the plans we had for our future dramatically ended.
Retired from my career that I enjoyed.
My spiritual life was on the rocks.
Not being able to share life responsibilities with my spouse.
My health was neglected, and I did not take proper care of myself.
A social life together.

What is grief and how does it present?

Grief is the anguish experienced after a sudden loss. Sadness and depression are the most common symptoms of grief. You may find it hard to think about the future or feel hopeless. Physical signs are trouble sleeping (too little or too much), headaches, digestive problems, and unhealthy coping mechanisms (food or alcohol)

The feeling of grief can be different daily.

Grief tends to wax and wane. When my husband is having a good day, I experience joy and hope. On those bad days, the emotions are harder to deal with.

“Stroke and the Spouse” identifies and reviews the stages that caregiver experiences. I will provide a brief description but please refer to the book for more information.

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 a 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.

Caregiver Stage: 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 wanted answers.

Caregiver Stage: Fear and Anger

Fear and anger were 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?

During this time, I was still in the stage of fear and anger. Moving through the stages is not linear, nor is it receptive to time. You will find you will move from stage to stage depending on the day and what is happening. Not knowing what to expect from day to day is normal and the best advice is to accept where you are at.

Once home, I thought we would get back to normal, but once home I soon realized that would not be the case. I was still angry and fearful but the predominate feeling was hopelessness.

Caregiver Stage: Loneliness and Depression

I had always thought of loneliness as 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.

Caregiver Stage: 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.

That evening, I took some time alone to discern what our future will look like and how I could handle this long term. My new role as his caregiver was no longer temporary but full-time. What would our marriage be like? Did I have the fortitude to handle this change? What support would be available? How can we flourish in this new life versus wither away?

What helps?

Everyone deals with grief and handles it differently. Speak with your healthcare provider about the best course of action for you.

What helped me…

Acknowledging the emotion as grief and why I felt that way. Once I named it I could move forward
Speaking with a therapist and learning better skills for dealing with grief
Spoke with my doctor and determined that antidepressants would be beneficial for my treatment.
Started an exercise program (This is the hardest step)
Joined groups for support.
Journaled and wrote the book “Stroke and the Spouse” and started the website (LOL!!! You DO NOT need to write a book, that is just what helped me)

For more information on what worked for us, check out “Stroke and the Spouse” available on Amazon or follow the code below to purchase.

Stroke Caregiver Connection…Because you care!

Order “Stroke and the Spouse” to learn more.