Guilt as a carer

Guilt as a carer

“How’s mum Lou?”
Pops into my inbox several times.  Often, it’s too much to even think about.  The answer isn’t going to be good. Every time.

Those who mum talks to think she sounds the same.  She doesn’t have an awareness of how the clock is ticking for her.  Likely a good thing right?
Well let’s face it, dementia and heart failure is only going in one direction and I’m nothing if pragmatic.  Which means, I deal with things without my head buried in the sand.

Right now, my head IS buried in the sand.

So, heart failure means the heart isn’t pumping as it should. Mum has diastolic dysfunction. Which means it isn’t filling up as it should.  The blood can only back up into the lungs, creating a cough.  Initially I explained this to mum.  Yet she now says,
“Ohh got  a bit of phlegm.”
“Ohh silly tickle.”
And there’s not much point keep telling her. Why? To create panic?  What’s the point?

So dementia, yes, that’s going to be horrific if it gets much worse.  I am not sure I understand it as well as I should. 
She’s strange and that’s not new. 
She has always made crazy comments and said things which don’t make sense. That’s not new.  Dad always used to facepalm and shake his head at her comments with a laugh. 
Mum has always been someone who stares at people in public and try to make conversation.
That’s not new. But it’s got worse. Which becomes dangerous in certain situations. Especially in Chatham town center.  Especially if she couples it with her usual, “Ohhh my gooooddddd…” with a head shake in judgement.

So, how does all this measure up with the title of this blog post?

My guilt. 

Recently I took advice from a professional.  The guilt I sense I feel now and will feel in the future is off the scale.  I should be doing more, being a better carer, engaging more. 
But I can’t. 
There is a massive block.  Is it me trying to prepare for her death? Because I don’t believe you can prepare.  I didn’t prepare for my brother Steve to die and we had years of knowing he would. Still I felt shocked. 
‘They’ Didn’t think she would survive this long and I hadn’t thought out having her in our place for two years after her heart attack. I certainly hadn’t thought of the impact on me, my career, my own health, my twins.  Yet here we are.  I have HAD to get back to working hard, as well as daily gym to prevent the spinal fusion that is threatened with Ankylosing Spondylitis (which mum NEVER mentions and this is a huge and devastating diagnosis that she should still be supporting me through) and all of these ‘selfish acts’ have me feeling guilty. 

Imagine after that time has come, here I am sorting out her things, her handbag, her lipsticks and feeling like I should have done more, been more, had more time, made more time.    The guilt.  Oh.

So, this goes with the territory it seems.  All carers feel that what they have done isn’t enough.  So we need to try and feel like we tried our best, given there are other lives depending on us (me and my twins are tight and no one will ever come before them and I make no apologies for that) and also to take care of ourselves too.

The guilt will be there. I know this.  When she needs me, I’m there. Of course.  When she is coping, I go to the gym, I goto work, I do what I need to do for life to function for all four of us.  And occasionally I will take myself off for some leisure time to feel like I might be number one for a couple of hours rather than number 4 (5 if you include the puppy dog).

Hearing it’s a part of being a carer helps.  But then a carer with guilt will hear that and respond, “Well, I don’t really care for her. Not really.” Stating that we actually do nothing. 


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