Little girl cryingIt’s Carer’s Week here, so I wanted to do a few posts around providing hints, suggestions and support for carer’s looking after a loved one with a terminal illness.   These are not necessarily in any particular order.

First up : Your loved one will probably get angry at you/with you at some stage.  It’s most likely not about you.  Yes, it totally sucks.  Yes it will hurt. And yes, it’s OK to acknowledge that hurt without feeling guilty.

My Mum was a super strong woman.  Discipline in our home was always from Mum – none of this “wait until your Father gets home” business.  And we ALWAYS knew when we were in trouble.

I shared the last couple of weeks of Mum’s life with her and it was an interesting journey from the perspective of learning how to relate to each other with a very changed dynamic.  First it was in Mum’s home and then she was in a hospice.  I thought I was conscious of supporting her and helping her as much as I could without undermining her sense of independence.  

And mostly, we did OK.  Most of the time Mum was very lucid and fully aware of everything around her and her journey.  Then there was the odd occasion, that increased as her journey progressed, where she was not.  The challenge was working out when she was ‘with it’ and when she wasn’t and of course then having the appropriate conversations for her state.  This was really hard for me to navigate as I could never be sure where she was mentally and emotionally and had to be conscious of not being too much in her face about her life coming to an end.  It took a lot of sensitivity and tact and sometimes it was just about creating a distraction.  I have no doubt that it was as equally hard for Mum, alternating between being at peace that her time was coming to an end and then having that will to live kicking in.

There was one day that I very clearly remember.  Mum had given me Power of Attorney and with her knowledge and permission, I went to her bank to register it so that I had access to her bank accounts.  When I came back from doing this, she was in a bit of an agitated state and was really concerned about some accounts that needed to be paid.  I said to her to not worry, that I would take care of everything – as you do.  I just wanted to take everything off her plate that she didn’t need to worry about anymore so that she could just relax and be at peace.  I didn’t want her to feel stressed about anything.  Wrong!!  Mum let rip, that I wasn’t to do it and that I had to bring in my laptop and the accounts so that she could make sure that they got paid.  

You know that feeling when you are in trouble with one of your parents and you instantly feel like a little kid in trouble again?  That was me…I felt like I was about 6 years old.  I also felt hurt, because I just wanted to make things easier, but in doing so, I had made them worse – she was more stressed.

We eventually talked it through and Mum explained to me that it was one of the few things over which she still had some control.  Now I understood.  I explained the place from which I was coming and she was able to understand that.

The journey of caring for a loved one will push every single emotional button we have and then some.  It is an absolute roller coaster of emotions and all the while you are dealing with your own sense of impending loss.  I can remember talking to my hubby on the phone before Mum and I sorted this out and saying to him “I know in the not too distant future, I am going to so desperately wish she could be here to tell me off for something, but right now, it really sucks!!”  And it did.  No one likes getting in trouble, especially from our parents and then I started doing the whole feeling guilty thing because I was upset and she was the one dying and I had made her upset and angry!!

So dear one, know this.  Your loved one will probably get angry at some stage and will direct it at you.  Anger is a normal part of the journey for someone who is dying.  With love and understanding, hopefully they will work through it.  In the meantime, allow yourself to feel the hurt and every other emotion that comes with it.  Acknowledge that parts of this shared journey are truly crappy and really not pleasant in any way.  Make some time for yourself, do some self nurturing, give yourself a breather and then return knowing that it is just part of what is.

If you need someone to who you can vent, know that I am here to support you if you so desire.

With much love, Sharon