When it came to driving, Rick was a “rebellious teen”. The return to driving is a big step that not only affects your loved one and you, but also everyone sharing the road. He felt that he had been driving for years and now this vital part of his independence was gone. The location of the stroke and the subsequent recovery is a determining factor on their ability to drive again. This may be an ongoing argument, and you need to remain strong.

During inpatient therapy and for about six months after, Rick understood he was not healthy enough to drive. The impairment of his reflexes, decision making, coordination and memory was acute. With each improvement, we had hoped that he would be back to 100 percent. Unfortunately, he was not, and adaptations had to be made. He was determined to drive as soon as possible. He thought he was ready long before I felt he was. Stand firm when you hear:

I love to entertain and have a house full of guest. Rick and I would start planning early. He would decorate the outside and I would do the inside. Like all couples, I did the shopping but we would joke, he was mt last minute man. I could always count on him to run to the store numerous times to get that one ingredient that I forgot. He would laugh and never complain.

Compassion is defined as being concerned for the sufferings of others. That is a very accurate definition and made sense prior to the changes that occurred post stroke. We are asked each day to show compassion towards our loved ones, others, and ourselves. When the day goes well, and we get a small taste of the past or a glimpse of our future dreams – being compassionate comes easily.

Why is compassion so important for a relationship? Henri Nouwen wrote in his book “The Way of the Heart”, Compassion can never coexist with judgement because judgment creates distance and distinction, which prevents us from really being with the other.

Time passes and your loved one has been home and the two of you have started to adjust to your new routine and the limitations of the stroke. So many aspects of your life have changed, as well as the person that came home from the hospital.

As the care partner, you are always alert to their needs and safety. At this point, I remember thinking, am I still a wife or simply the person providing care. With the stroke, so many changes, especially intimacy. This is an area that is never discussed with the couple, and I felt foolish discussing it since I felt I should just be content that he was alive.

So, let’s discuss…

Post stroke, the stroke survivor can experience personality changes. Stroke impacts the brain, and the brain controls our behavior and emotions. You or your loved one may experience feelings of irritability, forgetfulness, carelessness, or confusion. Feelings of anger, anxiety or depression are also common.

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.

Dear Caregiver or Care Partner,

I’ve never been sick a day in my life. While not exactly true, it’s close. I don’t get the flu, maybe one cold a year, and have never missed a day at work. The only time I spent the night in a hospital (prior to the stroke) was fifty years ago for a minor surgery. Then on June 23, 2021, I went out to my car to take something back to the store and it felt as though someone threw a switch and changed my life forever. I soon found myself in an ambulance (my first ambulance ride, in fact) headed for the hospital. I was sure that I would end up being embarrassed for creating such an unnecessary commotion. I thought all I had was a case of vertigo. Fortunately, I was not the one responsible for my diagnosis.

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.

Care Partners and Caregivers, for months, I would ask every heath professional that cared for Rick, “What can I expect?” “What will he recover?” “Will he be the same as before the stroke” The answer 100% of the time was…

“You just have to wait and see what returns. The brain is a funny organ, everyone responds differently.”

Caregivers and Care Partners, we are in the final months of Summer and the last opportunity to vacation. For a Care Partner, an extended break from caring for your loved one. Having time away is not only helpful for you but for your loved one as well.

We all agree, but how do you make this happen? It isn’t easy and takes planning but here are some tips that could help.

As I sit at my desk writing this blog, my heart is heavy. My spouse, physically is doing pretty well but emotional he is no longer present. Like you, I am grateful for so much but it doesn’t stop the pain of losing someone you love while they are still alive and needing you. You can’t move forward and try as you might, you can’t move back.

The old ways of communicating with your loved one no longer work. Trust me, I tried this past week, knowing ahead of time that he could not fully participate but hoping that this time I could get thru and bring him back. He listens and shared he would try harder to connect and care but it is no longer something that he can do post stroke. We both cried knowing the truth.