This year, through unfortunate circumstances. I was reminded of the things a
caregiver learns as they navigate the first year following a stroke. This
reminder came after my brother's wife had a massive stroke earlier this
year. While he was getting through the first few months, he leaned on me as
they "stroke expert" asking questions daily.
As a caregiver for my husband, John for over seven years, I realized we were
settled in a rhythm and I had forgotten all the ways that we adapted after
his stroke. I've worked with many stroke survivors and caregivers as
Executive Director of Retreat and Refresh Stroke Camp, so decided to do my
"Top Ten List" for new caregivers. Although each stroke is different,
whether it is one month or ten year post-stroke, these are some things I
personally have found to be true.
||Make routine your friend. Give your survivor adequate
information about any changes as soon as possible.
||Don't try to reason with a survivor having a melt down. They are
simply not able to be rational in the moment. Remember it's the
stroke, not you that make them angry.
||Always, I said always, keep calm in a crisis. Deep breathe and
count to 10 (or 100 if necessary).
||Don't take the exit of friends and family personally. It is
their issue, not yours.
||Slow down and repeat things with great regularity. Look at your
survivor when talking with them (whether or not they have aphasia,
they may have memory and cognitive challenges that require more
attention to the conversation).
||Encourage your survivor to get a involved as possible in
decisions involving their care or family situations. They still need
a voice and to feel they are a part of life's decisions.
||Allow acceptance that some things will always remain your
responsibility. (Paying bills, managing modifications, overseeing
doctor's appointments, meal planning, cooking household tasks,
||Find your "new normal" and seek a few things that you both enjoy
and then participate. (Go to the mall and walk or wheel around, get
a bite to eat or a gourmet coffee, watch the people, then go home
and rest. Attend reasonable priced community theater, go to a park
and watch the people as you feel the wind on your cheeks. Sit on the
front porch rather than in the house, go to a support group,
volunteer to do something for someone).
||Accept that it is unlikely will ever have a normal "marital" or
"family" disagreement that will be resolved in the moment. Things
that need to be addressed or changed will better come through
planned discussions, one topic at a time.
||Never ever give up because there can be progress even years
after a stroke. The progress many not be dramatic, but it's there.
I hope you find some of these tips helpful on your own personal journey
following a loved one's stroke.
Marylee Nunley is Executive Director of Retreat and Refresh Stroke Camp and
wife of John Nunley, seven year survivor. Marylee is a member of The Stroke
This article is reprinted with permission from
SSEEO, Stroke Survivors Empowering Each
Other, Newsletter Winter 2009.