An Interview with Elizabeth McIntyre

Elizabeth McIntyre

On a couple of occasions we’ve featured Aphasia the Movie and Carl McIntyre on the Aphasia Corner Blog. Recently, we had an opportunity to interview Elizabeth McIntyre, Carl McIntyre’s wife. Dr. Barbara Bennett Shadden – a speech and language pathologist and a long-time caregiver to her husband who has aphasia – helped us conduct the interview with Elizabeth.

Part of the extraordinary power of the movie Aphasia is the way the audience is allowed to experience the world – and aphasia – through your husband’s eyes and ears and mind. It is so difficult for those not touched by aphasia to understand how the inability to communicate affects every aspect of life, including one’s sense of self or identity. The movie truly lets us inside Carl’s world.

But what about you…your world…your sense of identity? We catch glimpses of your reality throughout the movie, but it is Carl’s story. Perhaps you would be willing to share a bit of your experiences in answering the following questions:

Q: If the movie were your movie, your story, how would it be different for us…the audience?

If the movie was “about me” it would begin with a scared and broken hearted wife going through the days on automatic pilot. I was a stay at home mother (I thought a retired school teacher) with a 6, 4, and 2 year old all depending on me to make everything all right and normal.

In the days and weeks following Carl’s stroke, I realized that I had lost my best friend, my husband. It still looked like him but he was not the same man. My husband was now my child. Carl could not follow one step directions or help me in anyway around the house. He was quiet, and Carl was never quiet. We would drive to doctors’ appointments and there would be no conversations. There was no laughter and no small talk.

I remember driving one day and I saw a couple walking down the sidewalk talking, and I thought WOW, I wonder if they know how lucky they are that they can share their thoughts and feelings with each other. Carl and I talked all the time. He would call me from work or somewhere from the road when he traveled 5 or 6 times a day. Then out of nowhere it is all quiet, no more conversations.

It was hard. It still is. Even after 5 ½ years, the small talk is limited. I still have to explain people I work with or events to him over and over.

Q: How did you change over time as part of living with aphasia?

I think I have been constantly changing as Carl makes progress. The first years our relationship was a more parent /child relationship because he could not understand things and his reasoning was not like it should be. I had to make decisions good or bad by myself.

I learned to be tough and to stand up for myself or Carl, which ever the case may be. I learned life is so unsure and you are not promised tomorrow, so don’t sweat the small stuff.

But most important I learned that you can’t do it all by yourself and that is why you have family and friends! The power of friends is amazing. Sometimes I needed a pity party and my girls would pick me up and take me out and I called that my “whine and wine” time. Then, I would come home and put back on my big girl boots and do what I had to do.

Q: How did your relationship change…and continue to change and evolve?

Our relationship changed and continues to change. Carl’s progress has been wonderful. He now understands everything and can speak to where you can understand what he is trying to say.

I think we were lucky in the beginning because we did have such great communication that it helped me to understood what he was trying to say or what he was acting out. I no longer have to rewind tv shows, he understands the plots now. He is slowly catching on to humor. The first 3 or 4 years, Carl could not understand a joke.

Another big deal to me that changed in our relationship was that Carl’s right side was constantly in pain. This meant that we could not hold hands, or that I could not sleep on the side of the bed where I may accidently touch his side. Carl was always loving and touchy feely and now he would grimace in pain. He is also quick to anger now and is frustrated most of the time. Carl and I did not get mad at each other very much before the stroke. Now, I think we are both tired and frustrated over miscommunication that it is easy to get mad.

Carl needs quiet to focus on his thought and one on one attention. That rarely happens in our house with three growing children and a dog . There is always something going on and it is normally not quiet. The world does not stop when Carl wants to say something. This adds to Carl’s frustration level and he yells more than I think he realizes and more than he needs to. It has caused a lot of friction in our marriage because this is not the man I married or the father I wanted to raise my children. The doctors told me in the hospital that where Carl’s stroke was in the brain and how deep it is he will suffer from depression. That would be normal. Carl’s depression took the shape of anger not sadness. I feel like the children and I walk on egg shells sometimes and I have to stop myself and remember this is the stroke, not Carl.

Q: Can you talk about some of the “little” ways that living with someone with aphasia changes everyday life? Some spouses have told me it is the “little” things that are sometimes more difficult to deal with than the “big” stuff. One told me how much she missed sitting down over coffee in the morning and sharing chit-chat about what is in the newspaper.

Living with Aphasia is hard. Aphasia is frustrating! It is lonely.

Carl does not ask me “how was your day” when I walk in from work? He doesn’t tell me something funny that happen to him, he doesn’t ask the children questions or share in any light conversation. He does not try to engage in conversation with new friends that I have met.

Small talk is hard so he just doesn’t want to. He says what is needed the best that he can. He can not get a job because he can not read or write well. He can not count change because numbers are hard. He does not feel like a provider, he was robbed of that when Aphasia came into his life.

Carl has been lucky that he has wonderful friends that did not go away when he had his stroke. They have stood by him and kept Carl in their lives. One special friend wrote a movie about Carl’s stroke and this gave Carl the opportunity to act again and to do what he loves. Now he gets to work again by doing talkbacks following the movie. This makes him happy and makes his life purposeful. As for me I get to catch a glimpse of the man I fell in love with 20 some years ago.

Q: We often try to help family and friends understand how to support the person with aphasia, but how can they support us – the ones living with and loving someone with aphasia? What did you need? What do you need now?

I keep going back to Carl and how it is about him. It is hard for me to separate “me and my feelings“ from Carl. I think what I miss most is laughing. Carl and I laughed a lot and now life is hard and laughter does not come as easy as it use to.

I have always been Carl’s cheerleader. I would pump him up before an audition and cheer him on when he got it. I continue to cheer the success that Carl makes with his speaking. As for me, I miss my cheerleader or support. Knowing somebody always has your back and then you turn around and you only have your shadow. I have grown as a person; I think I have become harder, not as much fun.

Q: What do you think is neglected when you read material for significant others or caregivers? What is left out?

I did not have any support group or anyone to tell me what to do, or how to move forward. Since Carl’s movie, I have met some other caregivers who attended the events and chatted with them. I love listening to other’s stories and how they survive. I wish I had had a support group to lean on that could’ve helped me make things easier for Carl or make his progress quicker. It would have been nice to have somebody who understood where I was coming from or where I was going. I had never even heard of Aphasia before.

But, what I had was a great group of friend that picked me up and listened to me cry and laughed with me at my sick jokes. They would cook me supper or watch my children and be a friend. That is what I have taken away from this whole stroke – Aphasia thing. My movie would probably be called The Power of Friends. You can not survive without them. Neither Carl nor I could do without our friends.

Carl and Elizabeth with their kids

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Reader Comments

Thanks for sharing your story, Elizabeth! I am a speech-language pathologist doing research about how family are affected by the aphasia. I think many of the spouses, children, parents, and siblings I have met would agree with your comment "I keep going back to Carl and how it is about him. It is hard for me to separate “me and my feelings“ from Carl." There must be something about aphasia that makes it hard to separate! I hope your post will help you and other caregivers to connect and provide more of that support you mentioned.

Written By Meghann Grawburg on April 13th, 2011 @ 10:20 pm

Elizabeth please know, you are not alone. Have shared some of my story with you on facebook. Husband has survived a brain tumor for 20 years and for the past 12 years he has been aphasic. Your feelings and thought in this interview absolutely hit home with me. I continue to search for ways to help Ron communicate but in that search find wonderful people like you. Thanks for sharing.

Written By Patti Gauvin on April 15th, 2011 @ 4:53 am

Wow… It is amazing how you just hit the nail on the head. My husband has aphasia after brain tumor surgery. We were best friends and like you…even though he looks the same and his personality is there, I’ve lost my partner. That’s why being in a hospital is almost easier than being at home. Everybody’s lives move ahead as normal, but nothing really is. I admire you for being able to say it. Anytime I touch on the subject people look at me like I must be a really bad person. :) thank you for gettting it out there.

Written By genie on April 15th, 2011 @ 3:09 pm

Kudos to you and your family. I got shot in the head 5 and 3/4 years ago. I have aphasia and dysarthria. I am writing this note with the help of 'DragonBar', because I too cannot read or write. I live alone, although my mother is an hour away. I still go to Actors Equity Association meetings (I used to be on the board-but now, only a member). I can't process new information very well– I get a sense of what you're talking about but not the details. Anyway I just wanted to say "Thank you". Care Givers and Care Survivor's go hand in hand. Again, I say 'Kudos to you'.

Written By Dan Proctor on April 15th, 2011 @ 5:44 pm

This is a very wonderful interview. My husband has aphasia after a stroke. One thing that you mentioned is that it is lonely. That is something that I had not anticipated. We are together almost all the time, but nevertheless it is lonely. I am sure that he might say the same for himself. Nobody else can fill the void of a spouse. I hope to see the movie, Aphasia. I plan to talk to some people about getting it here in Minneapolis.

Written By Katharine Malaga on April 27th, 2011 @ 7:11 pm

I never got to publicly thank Elizabeth for her honesty…and now the rest of you for your "from the heart" responses. When I wrote the interview questions, I was asking the really difficult questions that I personally have trouble with. Despite 30+ years of experience working with people with aphasia and their families, the experience of actually living with aphasia is so much more difficult and complicated than I had ever imagined. And I really thought I "understood." Each of these posts will have eased the burden for hundreds of readers!

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