It was exactly one year ago yesterday that my mum was diagnosed, and it was also the day she was admitted to the Marie Curie hospice for the second time. Today she was very relaxed and much more comfortable there than she had been at home for a very long time. It’s horrible leaving her there but it really does feel like that is the best place for her right now. She’s going to stay for a minimum of two weeks, and they are finally going to help organise help at home, and will not release her until that happens. It is such a relief that finally people are taking notice of how bad things have got and are going to help us. It is a very confusing and frustrating situation when you find yourself looking after someone with a terminal illness, it is something I personally knew nothing about and had no experience of anything like this. Once you are diagnosed you are basically sent packing to go and deal with it yourself, or at least that’s what it feels like. You really do not know who is supposed to be giving you help, either financially or care wise. Just trying to get my mum disability allowance was a battle, and everything has been since then. I had to basically beg the council to give her a blue badge for the car so that when she has a seizure I can park outside the hospital to take her in, rather than across the main road and round the corner and struggle to walk her there while her body is convulsing. Even thinking about it now makes me angry, all the stuff we had to endure because we were not aware of the things we were actually entitled to. I am angry with the whole NHS system and the lack of support they show patients, and this is something that really needs to change, I don’t know how though, especially with all the cuts it can only get worst.
Care wise we had some really good news this week, one of my mum’s oldest friends, who happens to be a multimillionaire, has offered to pay for all of her home care. This means we no longer have to battle with social services and other such organisations that pretend to support patients. We are free to pick whoever we like and whoever can offer the best care for her. Though it does feel like my life is turning into Breaking Bad, if you’ve seen the tv series you will see the similarities, though at least my mum is not so stupid to turn it down on a ‘pride’ basis. He is a very good friend and can and wants to help, I see no reason to turn the offer down. My brother and I are immensely grateful to you, thank you.
Here are a few of the images I took at the hospice today: