By Peg Prendeville

Sincere sympathies to the Barrett family Turraree on the death of Dan this Monday. May he rest in peace. I have lovely memories of visiting his house when I was young with my father. He and Dan’s father would be reciting and composing poetry.

What to Say to a Stroke Survivor?

Since Jim got his stroke I’ve had to learn so much of its effects. The main one in Jim’s case is his inability to put words together. He can understand speech but cannot think of the words himself. It is very frustrating from him and for everyone. I recently came across this article written by Larry Masterson, a stroke survivor and thought people might be interested in it. – Peg PrendevilleIf you’re wondering what to say to a stroke survivor, or how to cheer up a stroke survivor, start with that very word: survivor.

The term ‘stroke victim‘ is often perceived as a negative label. It’s much better to use the word ‘stroke survivor’; ‘stroke warrior’ or even ‘STROKE THRIVER’ – because that’s what these individuals are!

  1.  I am not stupid, I am wounded. Please respect me. Stroke does not affect someone’s intelligence.

A stroke is a “brain attack” that deprives different areas of the brain of oxygen-rich blood. The damage left behind can impair different skills, like language and speaking. This does not mean the person has lost intelligence. Rather, it means they might need more time to find the right words.

Do not shout. Do not yell. They can likely hear you just fine. Just be patient.

In fact…

  1. Be as patient with me the twentieth time you teach me something as you were the first.

Stroke recovery means relearning everything for the first time again. Many stroke survivors feel like they’re a child again, learning everything as if for the first time. You would not grow impatient with a child if you were teaching them how to ride a bike for the first time, so don’t grow impatient with your loved one either.

  1. Protect my energy. No talk radio, TV, or nervous visitors. During stroke recovery, the brain needs stimulation in order to heal itself. But it needs specific stimulation – and not too much! For example, the stimulation of doing hand exercises is good. It helps the brain rewire itself and improve hand function. But the stimulation of background noise only drains on the limited energy that a healing brain has. This is one of the reasons why mindfulness is important during stroke recovery. Limit as many unnecessary distractions as you can.
  2. Make eye contact with me. I am in here – come find me. Encourage me. If someone avoided eye contact with you, it would probably be upsetting, annoying, and hurtful. Everyone feels that way, including stroke survivors. In this light, you don’t need to worry about what to say to a stroke survivor. Instead, focus on how you say it: with eye contact.
  3. Do not assess my cognitive ability by how fast I can think. After stroke, the brain is busy rewiring itself through neuroplasticity. During this process, the healthy areas of the brain begin to pick up the slack for the damaged areas – and this takes time. In the meantime, the brain is struggling to heal itself and it may take a survivor additional time to retrieve information. This does not mean they have lost their intelligence. They are simply experiencing a delay in gathering the information.
  4. Repeat yourself – assume I know nothing and start from the beginning, over and over. As the brain heals from injury, it requires more energy to retrieve and relearn incoming information.

So when a survivor has a hard time understanding you, take the time to provide information in smaller steps. Putting the pieces together is an extra and unnecessary step. Instead, repeat everything and please be patient while you do it.

  1.  Stimulate my brain when I have energy, but know that small amounts may wear me out quickly.

It’s perfectly normal to require more sleep after a stroke. Survivors may find themselves wanting a nap immediately after rehab exercises or even right after getting ready in the morning. Tasks that once felt effortless may require a tremendous amount of effort now. Remember, the healing brain requires frequent rest periods to rewire! Stimulation is good (like with stroke rehabilitation exercises at home), and sleep afterwards is often necessary for recovery.

  1.  Please don’t raise your voice. I’m not deaf, I’m wounded. When a stroke survivor asks you to repeat yourself, they just want you to repeat yourself. They do NOT want you to repeat yourself louder, unless they ask. Saying something louder is not going to help them process it better.

Patience, compassion, and slowing down your speech are more effective ways of boosting communication.

  1. My desire to sleep has everything to do with my healing brain; and it has nothing to do with laziness. Stroke causes damage to the brain that must be healed. Just like a broken leg requires time and energy to heal, so does the brain. When a stroke survivor desires sleep instead of doing something “productive,” it’s not because they’re being lazy. It’s because their brain is healing and requires rest to recover.
  2. Please have patience with my memory. Stroke can affect a survivor’s short-term and/or long-term memory. It can also affect cognition. If a loved one doesn’t remember something that you told them a month/day/hour ago, please don’t take it personally. Be kind and patient with their recovery.
  3. When I’m “stuck” try not to take over. During stroke recovery, a little coaching or suggesting can be helpful for a survivor. Taking over and doing something is NOT helpful. I may have ‘APHASIA.’ Respect me. Constantly doing everything for a survivor puts them at risk of a phenomenon called learned non-use. Essentially, functions that you stop using will eventually become completely lost as the brain lets go of unnecessary functions (i.e. functions it thinks are unnecessary because you’re not using them). Movement is key to recovery, so avoid taking over. Instead, help your loved one accomplish tasks with good form and safety.
  4. 12. I’m not being ’emotional.’ I’m recovering. Try to be compassionate if your loved one displays emotional changes. Sometimes stroke can affect the emotion centre of the brain and affect a survivor’s ability to manage their emotions. It’s a condition called emotional liability. Also, a stroke creates sudden life changes for a survivor. Meaningful activities like hobbies and jobs might be lost. This can lead to depression. Put yourself in the shoes of a stroke survivor. If everything suddenly changed, and you had no control over it, wouldn’t you feel emotion too?
  5. 13. I need you to love me, both for who I have been, and for who I might become. During stroke recovery, the goal is usually to get back to “normal.” However, for many stroke survivors, there is a “new normal.” There are many emotional, behavioural, and even personality changes that can occur after stroke. Sometimes, the changes go away. But other times, they’re here to stay. It’s important to find acceptance for the here and now. Caregivers should support their loved ones in finding this acceptance.

You can help by cherishing your loved one for who they are now, instead of what was in the past.

Larry Masterson – Stroke Survivor.