Editor’s note: Today’s post comes from stroke spouse Melia Wilkinson. I will also be talking with Melia on the podcast in the coming weeks.
— Thanks, Bill
There are two groups of people, those who have been directly affected by a stroke and those who have not. You are now in the first group, and you are not alone. With that said, sitting in the Intensive Care Unit (ICU), you may feel alone and out of your depth. While every stroke is different, this is a constant. I was you, just four short years ago, and I hope what I learned may help you in your journey.
The first days after my husband had a stroke
Stroke is sudden, overwhelming and shock inducing, but you need to be your spouse’s (or friend or loved one’s) advocate. Things will get missed, dropped, even in the ICU, and you need to push at the same time as you protect. You will be by his or her side through the upcoming days and weeks, and that makes you an expert. You will rail, stomp your feet, demand answers and, most of all, push for what YOU feel is necessary. Don’t be afraid to speak up to advocate for the care that your loved one needs.Things will get missed, dropped, even in the ICU, and you need to push at the same time as you protect. -- @MeliaWilkinson #Stroke Click To Tweet
Advocating for him in the hospital (and trusting my gut)
I learned how important my role was in the first days after my husband’s stroke. As he recovered from his first surgery, I was at his side and noticed his responses were declining (he was no longer squeezing my finger, reacting, etc). I was told by his doctors (who were on rounds) that this is a normal ebb and flow.
While there may be truth in that, I had been next to him for most of the first 48 hours and KNEW things were different; the doctor on shift that morning had just come on. I waited about 15 minutes and then brought in the nurse and reiterated that something was wrong. Sure enough, my husband had a second bleed and was whisked out for a second emergency surgery. No one had done anything wrong, they were following protocol, but I was the only one who had been present continuously and knew something was being missed.
Remember this, just because someone sounds like an expert, it doesn’t mean they are one. You will hear lots of opinions and advice. The key here is to file it away, but to move forward. Each doctor will have an opinion. Each nurse will give you advice. Remember, every case is different. Every individual is unique. Most of the first doctors and nurses you see are in the ICU and they rarely see patients beyond those initial days. They truly just don’t know.Every individual is unique. Most of the first doctors and nurses you see are in the ICU and they rarely see patients beyond those initial days. They truly just don’t know. -- @MeliaWilkinson #stroke Click To Tweet
The roller coaster of managing expectations (Recovery is 0 to 100)
Our neurosurgeon said the best thing to me in those early days. Recovery is from 0 to 100. Your husband will be somewhere in there. Where? No one knows. The brain is mysterious and never behaves the same way twice. Just hang in there.
To put this in context, EVERY doctor in our ICU experience was nothing but doom and gloom. “He’ll never walk again” (my husband walks around the house with a cane and no assistance). “He will not know who you are” (my husband has no memory loss). “He won’t be able to speak” (other than a slight hesitancy on some words, there’s no difference). I know that many of the early doctors are trying not to give false hopes, but who cares. You need hope… You need a light at the end of the tunnel. Just remember, 0 to 100. Somewhere in there.
Recovery is different for everyone; those first days are full of long waits and then quick steps forward, there’s no schedule, just a “what’s next”. There are, however, milestones to achieve. For us, the first thing was stability. Then it was to come off the respirator. Then it was to answer simple questions, etc. I was pushy. I asked lots of questions and was constantly saying things like “OK, when will he no longer be intubated? How long will he be in the ICU? Where will he go next? Can you explain the process?” They often don’t have answers to these kinds of questions, but knowing what they were looking for and what their goals were for my husband was huge. It gave me just a little bit of control in such a chaotic situation. Knowing what’s on deck helps to keep you planning, coping and moving forward. There’s also the practical. You need to plan what your next steps are; who’s available to help and when… Knowing where you are in the process is invaluable.
The value of sharing and recording our story (starting at the beginning)
Early on, someone told me, “Make sure they know who your husband is.” What they meant was that you will not be at their side 24/7. It’s just not possible, but you want them to treat your loved one like you’re standing there, watching them. You want them to see him as a real person with a family. Print out pictures of you and your spouse, your kids, the family dog… anything. Write a narrative of who they are, what they are like, a little something about their recovery so far. (Remember, many of his caregivers will only be with him for one shift). Make your spouse three dimensional. This is something to carry with you as you move from one care facility to the next.
As you move into the next chapter, I recommend starting a video diary. You will forget how far you’ve come, and seeing it on video is a HUGE help. It’s also great for your loved one, as those first days are fuzzy, but when they see the evidence of their improvement, it’s very inspirational. CELEBRATE each day and each step, and get ready for the big push.I recommend starting a video diary. You will forget how far you’ve come, and seeing it on video is a HUGE help. -- @MeliaWilkinson #stroke Click To Tweet