Care Partner Care Giver Stage: 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.

What work for me during this phase.

As Rick and I dealt with the issues of depression, residual stroke damage, or current physical changes, we needed to define a better approach to have a full life. Slowly and safely, we tried new options and have taken him out of his comfort zone. Our marriage is not the same, and we are still hoping for more recovery, but we have learned to adapt. Based on my experience, I suggest the following to be “less lonely while never alone.”

Seek advice from others.

This is the motivation for this book. It was difficult to find resources to connect with. I was looking for ways to better communicate with Rick. Working with the speech therapist was helpful. She shared his limitations and information on Rick’s potential. She helped me to identify very positive steps that I might miss because they seemed so small.

Be honest with your loved one.

My tendency was to shield him from life stress. As I witnessed his progress and saw the challenges that he had, I would minimize my feelings in comparison. Don’t do as I did. Our spirit also needs to recover. Part of Rick’s recovery was to learn his new role in the marriage, and the only way that he could take part is with my honest feedback. This required listening to his concerns and together developing a plan that worked for both of us.

See a therapist, counselor, or spiritual advisor.

This can be a long journey. I eventually found a woman that I could connect with and being able to share my life with her helped. Talking to a professional is beneficial because I could share all my thoughts and fears without guilt, and then find new ways to cope.

Plan a daily physical activity.

My daily walk is around my neighborhood. I listen to music and let my mind float. This helps to clear the cobwebs and gives me a sense of peace. Being the caregiver is time consuming. The days seem to never allow for time away. Initially, I would only walk around our cul-de-sac, checking in on Rick after each round. Now I can go for a 45-minute walk.

Plan an outside activity weekly.

Getting out of the house was critical. Dining out was not an option for us since Rick had issues with taste, but there are so many activities that are handicapped accessible. Initially, we would just go for a drive and talk.

Set small goals for you as a couple.

Our life will never be the same, but it still can be good and sometimes better than expected. When he first came home, my expectations were way too big–we would be back to “normal” in a year. This only set me up for failure. Start by setting weekly goals and then monthly.

Weekly goals: eat dinner with a guest or family member, watch a movie together, or share one positive thing with each other daily.

Monthly goals: Go out with friends, have friends over, go for walks in the park versus around the house, add in household duties and take part in family decisions.

Stroke and the Spouse Mission

To impact, guide and improve the lives of Care Partners and Caregivers through education, support and resources