OK so, let me make one thing completely and utterly clear before I start. I love my family. I do, I really do. Right...lets do this!
So! Back late November, I was told I had myeloma. It's the third of Jan, I am sat at a kitchen table with some battery candles flickering, the door open and my overly stimulated young dog who is wide awake, running in and out. I should be in bed, my body says I should be in bed. I am exhausted. Here is the problem. I have a 77 year old mum, who still thinks she is in her forties, which is a fantastic way to live. Unfortunately, along with my brother, I am also her carer as she has some health issues. Mum and brother, decided to move into my place for a while, as I was discharged from hospital mid December. My brother has health issues too, and has Asperger's, and can be rather argumentative. I have a 17 year old daughter, she has autism, tourettes, hypermobility and a few other things, and is struggling coming to terms with this diagnosis.
Here is the rub.... I am now caring for all three of them, with a broken back and two broken shoulders, a new diagnoses, and my other health complaints. I'm not getting any rest whatsoever, even though they think they are helping me. I've tried telling them, but it is a constant battle. If I say I need to get some sleep, nine times out of ten, one of them will walk in and wake me up just after I've dropped off.
My mum is currently sharing my bed, but she wont go to sleep till about 4am, which again, wakes me up...then I get asked if I am ok, then she wants to talk, the dog is all up and alert. She has incontinence issues so I am having to clean bedsheets, help clean up in the bathroom, do more washing. I'm also having to, because she is mentally overloaded, do even more admin for her than pre diagnosis, as she is forgetting where she has to be, what she has to do, that kind of stuff. She also passed me a stomach infection which is really bad timing given my treatment plan.
My brother is sleeping on the couch, but always wants to be up gone midday, so you are tiptoeing about, he does help though when asked, but complains a lot for it. Due to his form of autism, he will quite happily watch as I try and move a piece of furniture or lift something heavy. He doesn't think to offer help, you have to ask for it, again getting moans and groans from him as a result...oh, he is 56 btw, and going on 15. He argues, a lot, and it seems I am always trying to calm things down between the three of them.
My daughter wanted me to climb over her covered double bed, which is against the wall, pull up and refit her sheet...which left me in a lot of pain. done this. No, it doesn't make the slightest bit of difference. I feel like if I was laying dead on the floor, I would still be asked to do something, or not even be noticed. I am having to restrain myself from making every little sound of pain as she is watching me like a hawk and gets upset if she sees or hears it, yet, doesn't muck in.
Yes, I can talk to them about all this. Yes, I have and it doesn't make a blind bit of difference. I know in part this is my fault, as I present myself as being capable, but boy am I fed up.
My aunt was over during the time between hospital release and now, but her idea of tidying up was throwing things out I liked, without telling me, because she saw it as clutter. Using inappropriate cleaners heavily over surfaces and not rinsing, not rinsing soap off of dishes. So I ended up recleaning stuff, as my daughter became paranoid that soap was still on the cutlery and plates etc.
Good intentions, I know, maybe I should be more appreciative, but the pain today and the lack of sleep is doing me in. I needed to rant, I feel like crying tbh, but then that would go two ways, and on the rare occasion I have had a bit of a cry, no one has paid a blind bit of notice and they've been in the room, or, my kid sees and she gets upset and then I am comforting her.
There is no sign at all of having space to myself, and I think when I go in for any treatment, I'll finally have a good rest...even with beeping machines and nurses every four hours.
