Am I really a ‘Caregiver’? (and what does that mean?)

“Caregiver.”

For years I never considered that this label belonged to me. It seemed too formal, to restrictive, too…important for what I did to help my chronically ill mum.
Hugs and housework and understanding.

Surely those didn’t deserve such a label?

Yet when my younger sister was diagnosed with a brain tumour and I spent every other day at the hospital and I cared for her in many physical ways from feeding to advocating for her with the pain team, I still didn’t feel this label belonged to me.

But I also felt that I needed the help a label brings.

Without a label I did not have the words to share my story.

READ MORE….

(today I’m posting over at Chronic-Joy.org).

 

 

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“I’m fine, don’t worry about me!”(Watchers, we are not Saints)

“I’m okay.”
“I’ve got this.”
“Honestly, it’s fine, I promise.”
Sometimes it’s easy to forget that we are only a Watcher, and instead begin to think that we are (or should be) a “saint”.
This is what it looks like:

Watchers, we are not saints

Do you…

  • …. feel guilty all the time. I’m not a good Watcher. Not even passable. Why can’t I do anything right?
  • … gloss over your hardships and sacrifices. Oh I don’t do much, not at all. Yes I spent all day driving my loved one to appointments in the rain, but that doesn’t matter. It was nothing!
  • … never share your problems. I’m going fine. One’s got to do what they’ve got to do! Other people have it worse, after all.

Continue reading ““I’m fine, don’t worry about me!”(Watchers, we are not Saints)”

Planning your own future when you have a chronically ill family member

Sooner or later all of us want to look into the future. The time comes when we need to sit down with pen and paper and plan out our next few years. The problem with doing this as a Watcher is that chronic illness extends into the future too! It’s a big part of our life and we can’t ignore it or naively pretend that it will simply ‘go away’.

How then do we plan our future, keeping in mind our Loved One’s chronic illness?

How to plan your future while thinking of your sick family member

1. We admit it is hard

I think we’d all admit that planning our future is hard anyway. Whether you have too many possibilities or not enough, it’s difficult to figure out what something we have never experienced will look like. Most of us have dreams we’d like to see become reality, or at the very least we dream that one day we will have dreams.

Considering your future in the presence of chronic illness is even harder. The reason for this is that chronic illness is unpredictable. We can’t say how long our Loved One will need us, or how soon they will take a turn for the worse or for the better. We want to be realistic, but we also want to be hopeful.

Of course life is unpredictable for all of us. I could die tomorrow. And yet loving someone with chronic illness means that my future plans will impact them. Whatever I decide there will be some ramifications in their life – and so the burden to ‘choose right’ becomes even heavier.

Continue reading “Planning your own future when you have a chronically ill family member”