I’m so emotionally charged this morning that I am already driving myself to despair.
The trigger? The fact that the world has no respect for the time of carers.
Todays’ example: A guy is coming to look at something in the house. The landlord said he would be calling me to arrange to come round and that’s fine.
So yesterday he calls at 11:30 asking to come in the afternoon. I said well no sorry, I have plans with my daughter already. He sounded all annoyed and inconvenienced and said he would call another time. He made me feel like I was being really awkward. But if it were a full time office job 9-5 like I used to, what would he do then? Would I be the same level of inconvenience? I get that he has people to see and so on, but surely his professional relies on his planning and booking of appointments.
This morning he called saying he was in the area. I was right in the middle of Amy’s daily stoma care. I had her in the shower seat and was doing a thorough clean with dermol lotion and then dressing it as lately it has been a little aggressive looking/leaking/overgranulated, also doing a balloon water change in her GJ. So I text him explaining my daughter has high care needs and that it wasn’t convenient and that I would need him to say a day and timeslot rather than keeping calling on a whim that it might be convenient. I am taking her to respite soon and am just finishing packing her meds and making sure they are labelled etc. So he leaves me another rambling message saying he is busy and will phone again to see if I am in.
NO. I already explained I can’t do it that way. I am not being awkward. If I was in and it was convenient then yes, I would welcome him in, offer a brew and polite small talk. But life isn’t like that.
Today for example I have hardly any voice as I am recovering from a bug. This does not excuse me from all the calls i need to make. Physio wants to arrange to come and assess Amy in her stander as we currently can’t have her in it. I need to phone the hospital to book in a GJ change but also a surgical consult about a possible jejunostomy. I have an electric fault with the car which is affecting getting the wheelchair up the ramp that I need to sort (still) and so on. I have meds to draw up, poopy bedding to wash and all sorts.
My other example is when an appointment gets cancelled in day and no one tells you. Or when an appointment overruns and runs late when you have another to get to. All you get is no apology or your next appointment being awkward about seeing you because you’re 5 mins late when they know full well they’ve left you two hours in their waiting room before now.
Aside from my caring role I have bad anxiety some days. People throwing me curveballs is a major trigger. I don’t like phone calls unless urgent or fully necessary. I prefer an email or text as it allows me to think and plan effectively.
So now, my poor daughter is dealing with the fact I have closed all of the curtains in a panic because I can’t stand the idea that someone will impose themselves on my day when I am in this state. I will finish now and stop being a bad mum and get things done and pay Amy attention.
I just wanted everyone to know that just because I don’t have office hours, or a physical work place other than my home or my car.. that actually I do have my own life and missions and that sometimes I do need people to make allowances for me. I don’t want to be a burden or be awkward but respect what I do with my life. The more you disrespect my time the more I feel worthless and like a sponger when actually I do one of the hardest jobs there is (and I do love it)