A Stroke Survivor’s perspective of a carer: An open letter to my husband

Written by Toni Arfaras

To my darling husband,

‘In sickness and in health’… so many times I’ve thought that that phrase must come back and haunt you. Let’s face it; when we spoke those words to each other neither of us would have imagined that 23 years into our marriage, when we were both in our 40s, our lives would be upended and we would be having to reassess our plans for the future. I never imagined that I would be so dependent on others for doing those everyday tasks and activities that I had previously done without a thought. I think about them now and when I do, it is usually with a sense of resignation knowing that me doing them puts a burden on you and adds to the load you have to carry.

People talk about the grief that stroke survivors can feel as they accept their new life. Recognition also needs to go to those closest to the survivor as they are also experiencing a loss of the person they knew. You love listening to music, which is something we used to share, but my issues with sensory overload makes it hard for me to endure prolonged sessions of background music let alone anything at an increased volume. My sense of humour has changed so that I am left questioning why something is considered funny which you sometimes feel is me attacking what you are saying. Whereas I was once independent and ready to battle whatever we needed to be fought you now advocate and take on bureaucracy which is something you’re not entirely comfortable with. And planning for a night out takes so much more effort as you consider noise issues, where to park and whether I will be capable of lasting for whatever is planned.

I know you say you’re happy to do it but I see the furrows on your forehead deepening when you’re trying to work but have to stop to do something for me. I hear the stress in your voice as I try to schedule appointments to fit around your lunchbreak or after work hours. I know your role at home is bigger and you feel the weight of responsibility. And I know that you hate that I’m aware of all of this.

I can sense your concern as you take care of me and I also sense the hurt I cause you when I say to stop fussing or get frustrated and react in a disproportionate manner to what is occurring. I want to lighten your load; I want to keep a semblance of independence; I don’t want to be a burden. I want you to know I love you.

I know you’ve found it hard having to carry so much of my needs. Occasionally you ‘let’ the kids help but you need to let go that little bit more. NDIS funding is there for a reason so use it. Me being ferried around by another carer doesn’t mean you are neglecting me or abdicating your ‘responsibilities’. By letting go you’ll relieve some of your stress as well as some of mine. Sitting in a waiting room where you’re constantly checking the time does nothing positive for either of our blood pressures. Of course, I’d like you there for ‘important’ appointments; prescription renewals do not fall under this category. 

You need to look after you more. Burn out is real and the toll being a carer takes on a person’s mental health is well documented. Though you may at times be my superhero you are not Superman. You are human and your kryptonite changes from day to day. This not a weakness; it is human nature. Just because I’ve had a stroke doesn’t mean these things stop and so you need to give yourself time to process and recover from the different stresses that life throws at you.

I want you to go out and have fun; go fishing, get out in the garden, go chat with a mate or go camping.  As well as you needing to look after your own emotional and mental health there’s a selfish element to this request. The truth is I would love some time to myself so that I can do what I want to do without feeling you hovering or checking up on me and knowing you are doing something you enjoy would make my own time all the more pleasurable.

I know I’ve said it before but I’ll say it again. As much as you are my carer you are also my husband and as such I am your wife and also your carer.  I am here to protect you, to look out for you, to help you, and encourage you. We are a team; championing each other at different times, annoying each other, laughing together, crying together, watching TV together, walking together, loving each other and living the best life we can…together.

I love you

Toni

5 comments

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  • Toni,

    That is a good story.
    I sense the honesty in every sentence.
    And a sentence it is…
    …to the truth.
    ABI (and our culture) can be like that.

    Regs,
    Dan

  • Your story is so similar to mine and my husband. I am 50, he’s 52. My stroke was 20 months ago. However now my husband is now fighting melanoma cancer. He’s had surgery to remove it from inside his neck and now has to endure immunotherapy treatment for 12 months. I still can’t drive due to 2 seizures post stroke. The last was 6 months ago. So another 6 months and I’m good to learn to drive with my newly installed steering wheel knob.
    Good help we have experienced is hard to find and even though I have NDIS funding I haven’t anybody to help find the right help. So…..we are doing things together – most of the cleaning, cooking, yard and still raising 2 teenage girls who are yet to fly the coop. We also now have to navigate 2 sets of various appointments and rehab. But like the two of you we have had to reassess our future and depend on eachother. And also live the best lives we can…together. We wish you both luck on your future adventures and accomplishments.
    Yvonne and Mick

    • Thanks for your reply, Yvonne. I can only imagine the challenges you and your husband are facing. Being rural certainly adds to that. You must be hanging out for when you can drive and get that bit of independence back. Wishing yo and MIck all the best in your continuing recoveries and I hipe you have a lovely Christmas
      Toni