Five stages of being a Care Partner/Caregiver
Looking back over the last few years, I have realized that I have experienced a gambit of emotions. When a health crisis happens to a loved one, it is very similar to a death. Your planned life has changed and is either no longer possible or needs to be adapted. Fortunately, unlike a death, we still have our loved ones with us.
Whatever stage you are at is absolutely where you need to be. The stages of the caregiver are not linear and change as life changes. You may feel on Monday that you have accepted and are at peace with your new lifestyle, and then on Wednesday, have a complete meltdown. That is why it is so important to acknowledge where you are and reach out to others. Please use the comment section below to share.
The stages of caregiving…
Caregiver Stage: Confusion
Confusion is the initial phase for the caregiver. I was confused and unclear about the extent of the stroke and what the potential outcome could be. Each day is a rollercoaster of emotions: anger, fear, and exhaustion. I was overwhelmed but wanted 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 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.
The confusion phase started the moment I made the 911 call. I needed very simple answers during the first forty-eight hours. Will he survive? What is the plan for the next hour? What do I tell the kids? Everyone wants to have an update and I came to understand that what they really want is to hear that all is going well, and he is improving.
His health changed every hour so providing an update soon became another source of anxiety. While I was attempting to stay positive about his health and share any good news, the reality was that his health was very touch and go at this time. My main concern was, would he even be with me in twenty-four hours?
Caregiver Stage: Fear and Anger
Fear and anger were the stage when I understood what had happened, but I now began 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 of 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. I outlined some fears that I experienced below:
Would Rick recover? How much would he recover? What if he dies? How much should I share with him? Does he understand what is happening? What will our marriage look like?
How can I prepare the children? What if they lose their dad? How will their relationship with Rick change? Do they feel they need to care for us now? How will this affect their families?
Can we handle this financially? How much will this cost? Do I have enough coverage? Will I need to take a leave from work or retire to care for Rick? Am I equipped to make all the family financial decisions?
What is my new role? Am I ready to be the caregiver? Can I take this on without anger and frustration? Why is this happening? Will Rick and I ever have an intimate relationship, physically and emotionally, again?
Caregiver Stage: Loneliness and Depression
I had always considered loneliness sadness due to a 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 world is flying past you with the typical day-to-day issues you thought were 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 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 loneliness, while never alone, is universal when a caregiver.
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?
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!