Monday, 2 May 2011

Dying is hard to do

We didn't think my mother would last until Christmas but she did. And to each family event since. Not that we knew it but she's been living with a falling blood count, it went down to a fraction off 5 just a few weeks ago and after a transfusion that went some way to immediately relieving pain and her struggle to move. That honeymoon lasted all of a day or two and the pain returned. This is the psychotic, aspergers mother who refuses to have anything to do with the medical profession or any proper pain relief. Such that me, her sane-ish and non-drug using daughter has procured weed and made her weed cakes to help with the pain. That only worked for one night.

The latest news from the one specialist she will have anything to do with is that the secondaries have spread significantly to her neck and spine. He spoke in hushed tones to me on the phone - I was the one that then had to relay this news to her - with regret about how no operations could be done on those bones and we could only make her comfortable. He was going to write to the GP she never uses and also the local hospice. He had previously arranged a Macmillan nurse for her which up until now she had refused to have owt to do with her. Coincidentally, the same day that news came through I had forced my mother's hand and begun to organise an appointment with the Mac nurse. At this time my mother felt she had some other condition entirely which was responsible for her symptoms and not the diagnosed one of cancer and bone secondaries. I suggested to my mum that she accept pain relief even though she might think differently about what the diagnosis might be. And I also broke the news to her that although her chosen diagnosis might have those symptoms so do the symptoms of bone secondaries.

The Mac nurse was brilliant and pitched it just right with my mother. I had previously spoken to her about my mother's singular ways which I am sure must have helped but I suspect this nurse was just brilliant anyway and used to dealing with people at this stage. All that was discussed at the first meeting was pain relief and some technical details regarding benefits my parents had not been claiming. It was all in the tone of getting my mother more comfortable and and back in action rather than comfortable to die.

My dad insists on having my mother at home for as long as possible and doing what he can. The thing is, he continues to be the poster boy for the abused husband. For some months now she has remained on her sofa only making sorties to the toilet and the rare visit out to us. Screaming that this or that has not been done right. She has a mobile phone on her and calls dad in the kitchen on his to demand this or that. He has no imagination for cooking or anything much, which is no surprise, and therefore his food is pretty dull and uninteresting or just plain wrong. So she is eating less. And then blames him with no reference at all to her condition because of course she doesn't have cancer or secondaries.

Last week the Mac nurse prescribed morphine. I was with them for that appointment and I left my parents in a good mood at home waiting for the prescription to come through later that day. In a very few hours I had the first of the really hysterical phone calls from my mother on my work mobile. Incoherent but simultaneously screaming at my father. In the background I can hear my father wailing and saying he has had enough. On an important afternoon I drop everything and drive back over to them and find the diplomacy to calm things down - dad is sent off early to get the prescription (or just wait for it) and I sit with mum trying to find soothing words, listening to the diatribe coming out of her mouth, and then making her the fastest most delicious chicken soup in the history of the universe. By the time dad is back with the morphine she has eaten a little and calmed a lot. The morphine liquid is wonderful. A second dose an hour later and then she is sleeping calmly for the next eight hours.

For the past week or so I have been going every single day to see my parents and to give my dad some respite. Easter has been very useful. Since that episode though, there have been a further two hysterical phone calls - the last one late last night. No, she doesn't want me to drive over, she just wants me to tell dad to co-operate with her and to be kind and yet does not give the phone over to him. My direct number has become a crutch over which she can still, at times, spit out her words with such daggers that they come flying through the ether. It distresses me and yet I feel I have to help.

At other times, she lays there propped up on her sofa, physically crumbling into herself going over inane stuff again and again. Telling me how good her strategies are with setting out her cups and bottles on her "bedside" table. She is meticulous to the nth degree with things having to be just so and woe-betide if it isn't. That old chestnut of her wanting things in one way and then suddenly out of the blue it is now another way it should be done. My dad clearly does not listen to what my mother is actually saying which does not help, but I find I am increasingly unable to hear what she is saying too.

And still, there is no mention of dying. In fact the opposite and you can feel that vibe in her - that strong will to live even though she gives lip service to saying she is not afraid to die. We have not been given a time and in some ways I quite agree with that. In other ways I find my life is on such hold as she becomes the focus with the fear that maybe she isn't really going to die any time soon, or indeed ever!, and she has finally ensnared me into her egotistical web of making her the focus of the world.

Coincidentally at this time, my brother has been getting help from a psychiatrist who could not believe the stories of our childhood and wanted to check with me. My brother is a pathological liar so once I had stripped away the heroic and exciting stuff, as I told the psychiatrist, that the truth is actually far worse. And then I asked her had my brother told her about the way he used to beat me up and no he hadn't but that there was stuff he was not proud of and did not want to talk about. So I coolly told her that I was not just getting it from my mother but also from him too. Those wounds of my youth ripping open once again.

News of contact with this psychiatrist finally blows my sister apart after some week or so of mulling it over, so angry our brother has continued to impinge upon my life. Even though I was more than happy to help and would prefer to have helped than not. And finally my sister now speaks about our awful childhood and her experiences afraid that if she goes much further the cork will pop and never go back on the bottle again. The addictive drug of choice for her throughout her life has been work and a stiff upper lip. And suddenly she is stopped. Apologising to me that she has not been able to help out more with our parents at this time. Me being the big older sister and actually feeling bold and brave and together I am taking charge. Some days I am OK and some days I am not though I still keep doing for my mother. It might only be a couple of hours out of the day but each time it wipes me out for the entire day. Emotionally and mentally. The self-destruct button in me is eating lots of sugary foods and alcohol - that is my current addiction. In due course I will sort that out again and luckily my weight has not ballooned too much and I've escaped from the migraines. Darling Mr Doris continues to be amazing and supportive.

On the practical front, I've been visiting possible green burial sites and sorting out potential details for my mother's last wishes which she had talked about a lot up until she became really poorly. I've found the most amazing and beautiful place that I think my dad and sister would agree to too. A place where I think I would visit and sit with the wide open sky above; the birds tweeting in the trees and the farmlands rolling in the distance. I could see relatives coming to visit there, reflecting on our lives that have been so impacted by my mother's presence. I do not know if I will be crying for her or for me. I can see her cardboard coffin in the grave and I am horrified at the thought.

For now I am her strongest advocate for living and making the most of what there is of life. She clearly has no intention of letting go, even as she screams with pain at the slightest movement.

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