Five years ago our lives changed when my husband had his first diagnosed stroke. Since that time, we (and I use this term intentionally) have survived two more strokes and embarked upon a difficult road full of ups and downs. It is one we never could have imagined being our reality after only seven years of marriage. I have learned so much; how inpatient rehab works, the intricacies of the healthcare system, how to deal with the insurance struggles, and handicapped “accessibility” in different locations. I have also mastered enough medical terminology that a few doctors have mistaken me as a medical professional. In many ways, I feel like a different person since that day.
Being a caregiver is hard. Being a caregiver to your husband brings with it a new dimension. I have rejoiced that he made it through the strokes and also grieved that our marriage will never be the same. Truthfully, there are days when I don’t handle it well - I am short with him or grumpy about having to get him yet another meal or drink. But we keep going - taking it one day at a time and trying to find the joy in the little things and also the big, disgusting, or meaningful things.
When you are in the hospital, doctors and nurses are always changing, so I am the constant in all this. I am always there by his side, collecting the information, asking the questions, reminding the nurses of the details of his case. I am the one who carries the memories. I remember when a particularly negative doctor told us that he wouldn’t get much better and that he’s going to get aspiration pneumonia again. I’m happy to say that he hasn’t since that day almost five years ago, and yet I remember that conversation like it was yesterday - that lack of hope and the grim picture that was being painted for us.
I’ve come to know that I can’t live that way. I have to stay hopeful and find the strength that we both need to carry us through the inevitable difficulties. I have to fight the insurance company to give him more physical therapy sessions even though I know we probably won’t get them. I have to research ways for us to travel to New York City, one of our favorite places pre-stroke, and maneuver the streets without launching him out of the wheelchair on an unexpected bump. I see the world through different eyes now. In co-founding Stroke Awareness Vermont and trying to educate people about strokes, I find hope again, and in so many ways, it has been healing to me.
But it is not easy. In encouraging me to take care of myself, countless people have used the saying, “you have to put your own oxygen mask on first.” I’m trying. Asking for help is something with which I struggle, and I feel guilty when I just want to be by myself. However, I know that time is crucial for me to rest and also deal with all the other personal and professional responsibilities that come with ordinary life. It is hard.
Through all of this, I have found a strength that I never knew I had. I know I am a good advocate for him. I joke that his doctor goes running when he sees we are on the appointment list because I always come with a long list of questions. When he had his third stroke in March of 2022, I was the one who noticed the slightest droop in his face and asked for an MRI to be done. The doctors kept saying there was no reason to believe it was another stroke. Even though we had to wait through the weekend for the MRI and I know they really did it to appease me, I insisted because I knew something was wrong. I didn’t want to be right, but I was. Thankfully the doctor valued my input and listened because not all of them appreciate the spouse’s perspective. Afterward I used all of our resources and connections with doctors, nurses, therapists, to get him admitted to inpatient rehab after he was initially discharged.
I am proud of what we have overcome and accomplished, but it is never ending, sometimes overwhelming, and exhausting. My advice to other spouses of stroke survivors is to take notes, reach out to community organizations for assistance, keep track of the medical professionals that you really like and trust, and stay in touch with them. Ask questions over and over until you understand the terminology and the process. Ask for help (I need to take this advice). Try to find the good in this journey and be grateful for the little successes. Pray.
I have to believe that there is good that can come from this new life, and amidst the difficulties, there has been. I desire to help other caregivers who are just starting this journey, so if this is you, please reach out and we can chat. Stroke survivors are inspiring, and so are the caregivers who care for them!
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