Strokecast
A picture of a dirt road with a tree on the left side. The text on the picture says, "The road to stroke recovery...isn't paved."

Guest Post: My spouse had a stroke, now what? (Part 5)

Editor’s note: Today’s post comes from stroke spouse Melia Wilkinson. You can find the earlier parts here:

— Thanks, Bill

A picture of a dirt road with a tree on the left side. The text on the picture says, "The road to stroke recovery...isn't paved."

Getting Home and to a (New) Normal

So… my husband’s therapy had progressed. At this point, you are probably close to hitting the maximum days of skilled nursing facility per your health insurance. Make sure to do lots of research on this, and confirm how many days you’re allowed and how they classify the various facilities. Do not take anyone’s word, and get everything in writing. For us, it was time to move to acute rehab at our original hospital. In hindsight, I wish I had done a little more research on the facility. When we were at the hospital, I had bought into all their talk about it being the best place to finish up, but I came to find out that wasn’t necessarily the case. It did take a lot of insurance approvals, back-and-forths, and phone calls, but off we went to the final stage of therapy — acute rehab.

No rehab facility is perfect, but recovery can seem miraculous

Here’s what I found out about acute rehab versus therapy at the previous rehab facility. It’s much more intense, and some of the therapists are AMAZING, but they did not have a 360º approach. No one talked to each other and, when a therapist switch happened, the new one would know NOTHING about what the other one had done. Each therapist had dramatically different techniques, and many were simply not up to speed. I eventually went to the head of the department and asked for electrical stimulation. They got the unit out of a closet, and called someone down to teach Kerry’s OT how to use it. Seriously!

The entire time we were at acute rehab, it definitely felt like they were preparing us for departure. Lots of education on how to do transfers into the car. Lots of work on basic care, like showering, etc. Our recreational therapist took us out to lunch one day so we could get the feel of parking and so on. I’m going to be frank. It was terrifying. Everything was much harder than I thought it would be. The thing is, though, none of it was ever as hard as it was those first days in the hospital. Now, we don’t even think about it. We just get around town. You may be frightened or overwhelmed, but know that it gets easier and that you will figure out what works for you. It does get better.

I’m going to be frank. It was terrifying. Everything was much harder than I thought it would be. The thing is, though, none of it was ever as hard as it was those first days in the hospital. -- @MeliaWilkinson #Stroke Click To Tweet

One other thing they will talk about is preparing your home. Just be warned, they may give some assistance, but most of this will fall on you. I’ll go over this in more depth later, but you should start looking at your home from an accessibility point of view and see what your challenges will be.

Now, back to acute rehab. While my husband had increasingly improved at our rehab facility, the additional time each day in acute therapy marked dramatic results. One of our first mornings a nurse came in to measure responses. His left leg was at a zero when she asked him to lift it. That night, she came back in after he had a full day of therapy, and when she asked him to lift his leg, he was able to lift it several inches. It really did seem miraculous.

Going home to a new normal

The days flew by. My husband was exhausted and had reached the point when he was done and wanted to be home, but I made sure we got each and every day possible. Towards the end, they started fitting him for items needed once we left. We received a big expensive clunky wheelchair, a four quad cane and a shiny new leg brace.

I have no idea what sort of input you can have on a wheelchair, as I wasn’t given any options. If given the chance, though, you want a lightweight wheelchair above all else. Getting those things in and out of the car is a real back-breaker. Wheelchairs basically come in three weights (and thousands of models). Lightweight travel chairs, middleweight chairs, and large clunky chairs. A lightweight travel chair is great for quick ins and outs, but we’ve landed on the middle size. With its larger back wheels, and yet lighter weight than the largest, it’s a good compromise.

The last days in Acute rehab were a blur. Lots of paperwork. Final notes and prep. And then there was this odd moment when we just left… My daughter, husband, and I (with help from a nurse) climbed in our car and drove home. It really was surreal after nearly five months of being in a facility to just… leave and go home as a family. I was overwhelmingly nervous about how we would manage, but also relieved to finally all be in one place. We drove down the highway with my husband telling me which lane to switch into. In some ways everything had changed, and at the same time, with Kerry as the backseat driver, it felt like nothing had changed. Off we went to navigate our life outside the walls of hospitals and rehab facilities, and on to our (new) normal.

 

We drove down the highway with my husband telling me which lane to switch into. In some ways everything had changed, and at the same time...it felt like nothing had changed. -- @MeliaWilkinson #Stroke Click To Tweet

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