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A Reflection on Living with a Degenerative Disability

by Tara Collyer

Note: Living with a disability is hard. When you add a serious illness or degenerative condition to the situation, there is a whole new level of actions and emotions which come into play. I just wanted to share a little of my journey.

An Open letter to Caregivers

Dear Wonderful You,

This chronic, deteriorating, progressive condition process is so frustrating – for me and I’m sure for you, too.

Neither of us signed up for this – I didn’t expect to get this sick and you sure didn’t expect it either. Yet you stepped up and have stayed with me. Thank you is not enough!

Sometimes I don’t know how you do it. I get so tired and can’t do what I used to do; or even what I thought I would be able to do just yesterday. I want you to know about some of the feelings and thoughts that run through my mind that I probably don’t share very well.

I need you to:

  • Hold me accountable for what I say and do.  Just because I’m sick doesn’t mean I have the right to be mean to you. At the same time, please give me a bit of grace when I’m worn out and exhausted and the right words don’t come out. I do love you and appreciate all that you do for me.
  • Remember that the anger or frustration I vent your way isn’t about you. I am angry that I can’t do what I used to do or what I want to do; I question my value and my purpose.  Most of all, I do not like being a burden to you or anyone else. You say that I’m not a burden that you love me and we’re in this together. Yeah, right. I think of the things we could be doing if I were back to normal and it frustrates the heck out of me.
  • Remember that I’m scared. I’ve always felt somewhat in control of my life, my actions, and my future. Now this has stepped into my life (and yes, our, lives) and makes decisions for me that I cannot ignore.
  • Be my advocate – even with myself. Tell me to lay down for awhile if I seem tired or fading. Yes, I’m a grown-up, but I need permission to rest, as I feel like a slacker most of the time.  You are not responsible for me – I know that – but I feel less guilty when you say it’s okay. I also feel loved. J
  • Be my advocate – with the doctors. I know I get weird symptoms and tend to forget a lot of things. When I focus on one symptom or pain, I forget to mention others – and the docs need to see the whole patient. Sometimes we see so many specialists whose focus is so narrow that the overall person gets lost.
  • Take time for yourself. Please go out with a friend and don’t worry about leaving me at home alone. Or take up the offer of a friend to stay with me. I will rest or potter around just fine. And I will feel better knowing that you are able to recharge your social self.
  • Keep finding humour – even dark humour – through this journey. Laughter is healthy for all of us.  We’ve gotta keep laughing – some days it’s the only exercise I get!

I am filled with gratitude for your continued support. I also have ugly emotions like guilt and anger that you and I are even in this situation. It’s as if life’s regular challenges weren’t enough – toss in some unexpected, uncontrollable health problem to our lives and see what happens!

These ugly emotions I must work through on my own – no platitudes will make them go away; this is part of the process of coming to terms with a stark reality that humans aren’t too good at acknowledging:  we really cannot control everything. But we can control how we react to what comes are way.

I want you to know that no matter how this ends – whether by sudden passing or slow demise – I have great love and appreciation for you. You are among the angels on earth, making life here better for others.

XOXO,

Your Favourite Patient

 

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