Reality check about being a carer
Have had a really down week ... or maybe it has been two. Not really sure. Have now reached out and am focusing agaain on self-care. Am acknowledging my depression, stilling with the understanding why it is there and am listening too it. But in all honestly feel guilty about this.
Due to what is going on for me haven't been the best carer over the last week or so. Damien and I had a talk about this a couple of days back ... initiated by Damien. Was told something by my beautiful partner that am still sitting with and assessing the depths of it.
Damien needs care. His PEM is so intense that he can't even prep a meal, even if it has been made prior for him. Cognitive function is sereve. Even if alarms are set and Damien reads what they are for he often still is not able to comprehend what that means little though act on it. On top of this as you all would know the mental health aspect is massive. It feels dreadful saying this about him because he is actually a really capable, independent and effective person. It's just that his MECFS impacts immensely on this, as it does for everyone with ME/CFS.
So the other day Damien said to me, "You are not happy. If you are not happy and sad all the time because of this situation it would be best for you not to take on the role of my carer. It isn't making things any easier, but it is making it worse."
Lets give some context around this. Damien was not being nasty about this comment, unappreciative or underming what I do for him. Actually it is the complete opposite. My real nature is light heartness and happy. Damien loves this about me. And the decision I made around caring for Damien was to offer him light and to still have joy in my day.
Damien feels like shit to see how much he impacts on his family and seeing me so depressed really tipped him over.
He was saying this as a way for us to be open to the fact that there maybe other ways, other options, other scenioriors to what we have at the moment.
This has made me really sit with what I really want. My purpose in life is to be at service and deeply want to be at service to the person I love so deeply. Of course I want to be his carer however want to do this in a way that fills both of us up.
The reality check around all of this is that I need to be viligent with my own self-care and mental health. Small little things have fallen off in regards to these things over the last month or so and the snow ball affect occurred.
So am writing this post as a part one to acknowledge the importance of implementing continuous self-care. Then next week will share how the journey of stepping back into benefical self-care is going. In away this is keeping me accountable so not to go any further down the rabbit hole of self-pity, depression and self-judgement.
Thank for reading and for being there
river last edited by
@Vicki-Murtagh It's great that you are aware of how being a carer is impacting your well-being and are able to recognize your own needs and wants.
I have been that person telling my partner not to be my carer because it is making them miserable, so I understand this from the other side.
I have to say, if you can afford it (I don't know it you have NDIS/DSP), even if it's only like once a month, I highly recommend getting a professional carer now and then so you can really focus on yourself and "fill your cup" while resting assured that Damien is getting the care he needs. I'm happy to give advice on finding support workers it you're new to it, I have a bit of experience.
@river thank you so much for your reply. Funny but it is reassuring that other couples have also gone through the same conversation about being a carer. Honestly it is difficult all around to accept the massive changes in everyone's lifestyle. Do love your suggestion about a professional carer. We are still trugging through the NDIS process so not sure how long that will take. But it is something that we have spoken about putting in place when that does finally happen. In the meanwhile will take some snippets where possible to fill up. Keep being wonderful. Vicki
@Vicki-Murtagh I know this response is a little late, but I have never been on the carer page. My wife is my carer and I feel guilty that her job is now caring for me. We have also had similar discussions and I often wonder how she can do it. So, my wife is my carer and qualifies for carer’s payment from Centrelink because that is a role she wants. To be a full time carer, you don’t have to be on call 24/7. Once you get the NDIS bullshit sorted, I would be looking for Support Worker funding. That way you can still be his carer (which I find comforting having my wife), but you can still focus on self care. I have had a SW take me out for coffee so my wife can have an opportunity to relax or a SW just stay at home with with me while my wife goes and gets a massage or pedicure or some form of self care. I have had a SW drive me to appointments so my wife can have time. I personally wouldn’t feel comfortable with a professional carer (just a personal thing), but short bursts of SW time works for us.