National Stroke Awareness Month – Caregiver Perspective

Doug at the Rose Garden in Portland last fall.

May is not just bike month, it’s also National Stroke Awareness Month. As the wife and caregiver of a stroke survivor, it seemed like a good time to talk a little bit about what it’s like to be a caregiver.

Our situation is not common – Doug is young (43 when he had his stroke) and had no risk factors commonly associated with strokes. Quite the opposite – he is very fit, eats well, low cholesterol and blood pressure, and never smoked. This has been one of ways we’re more fortunate than many stroke survivors. Although Doug’s stroke was severe with full left-side paralysis (his non-dominant side), his age, fitness and strength allowed him to regain the ability to walk fairly quickly. His stroke didn’t result in as many cognitive or language problems (aphasia) as someone who has a stroke on the left side of the brain. Doug is also highly motivated and really works hard to keep improving, something that proves challenging for many survivors and their caregivers.

It’s can be hard to accept that we’re lucky in this situation, but from a caregiver perspective, I have seen others in support group meetings whose lives have been impacted so much more dramatically. Nonetheless, I have obviously never had a more difficult and life-altering year and as things move forward, have had to come to grips with our lives having changed forever, which in our case, is likely to be a while given our relative youth.

Spouses aren’t the only caregivers, of course. Friends and family carry a lot of the weight, and we’re lucky to have my parents close by and Doug’s parents able to come from Arizona to spend time with us, plus good friends who live nearby. They all helped with appointments early on (when he had several a week) so I was able to work again after being gone for six weeks, as well as doing a ton of things around the house and yard, walking our dogs, shopping, you name it. I don’t think we’d have made it without them.

Still, it’s unavoidable that the bulk of the work falls to the spouse. The StrokeSmart site talks about how women caregivers of spouses seem to experience higher levels of stress and associated health risks (although whether this is due to higher reporting of stress, depression and illness than men, it doesn’t say). It is an emotional roller coaster where some days feel almost normal and other days you don’t know which crisis to deal with first.

There are constant surprises, some good, some bad. We’ve both been surprised at how proactive we’ve needed to be to ensure Doug’s continued progress. Let’s just say Western medicine wants to treat all stroke survivors the same – focus more on the underlying cause (usually health-related) and less on the recovery. There doesn’t seem to be much room for creativity, especially when dealing with a total anomaly like Doug given his age and the cause of his stroke. It’s been frustrating how much we’ve had to rely on our own wits and means to get him non-standard treatments, like acupuncture or Saebo. The good news is that putting this effort in does pay off – both in how he has recovered abilities in his arm and is able to work again.

One of the hardest things about this is that the caregiver-patient dynamic is much different than husband-wife. In our case, we’ve had a total role reversal where I am now totally in charge of errands, cooking, fixing things that break – stuff Doug used to do routinely (I had a real shock the first six months or so when I realized how much he took care of around here). Lots of little stuff too, like peeling an orange, opening or closing containers, zipping coats… I get exhausted easily doing all this plus most of the things I used to do before and it’s hard not to just see myself as a caregiver and Doug as someone needing my help.

But he continues to improve, and I have more endurance now. We just got back from a short trip to Palm Springs (see post on that), which was immensely good for both of us. Doug might even be able to drive starting in August or September. Watch out world! Actually, trust me when I tell you we’re all better off with him out there on the roads than me. He used to do all the driving and my having to get behind the wheel has been one of the absolute worst things about this whole ordeal. Let’s just say we’re both a lot happier on our bike and trike!

Small pieces of life’s puzzle start falling back into place and plenty of mornings now we wake up and think, it’s nice to have a more or less normal day in store, with jobs to go to, meals to cook and eat together, and things to plan for the summer. I never thought I’d be happy for such routine “back to the old grind” days, but I think all the caregivers out there will agree with me, those are blessed days we should be grateful for.