Being there

I woke at 4 and did some visualisation meditation turning all my ailments and pain pink and got back to sleep about 5 but not before my daily word had been sent to me by A.Word.A.Day with Anu Garg, today's word is....


atrophy

PRONUNCIATION:
(A-truh-fee) 

MEANING:
noun: A wasting away or decline, due to disease, injury, lack of use, etc.
verb tr., intr.: To wither or cause to waste away.

ETYMOLOGY:
From French atrophie, from Latin atrophia, from Greek atrophia, from a- (without) + trophe (food). Earliest documented use: 1620.

As Mum has Multiple Systems Atrophy or MSA this struck me as a strange coincidence at this time.


I spent the morning in bed relaxing and coughing, had a lemsip, lots of water, Sue Lindenburg came up to my room and we had a coffee together that Max made us (I felt a bit like that episode of Fawlty Towers where Polly pretends to Sybil ill in bed). Lovely Sue made us a hearty chicken casserole and rice and brought some chocolates over too, so sweet.


I talked to my Godmother Paula who rang me, she says she is thinking of Mum all the time, they have known each other since they were 11... I wrote to some other old friends of hers that I couldn't phone in case anyone wants to send cards or messages before she goes. I made a list of good wishes to share with her.


I listened to THIS loud and on repeat for about an hour while I was showering and getting ready to face the day and had this to say about the song and Chris Cornell on Facebook who took his life yesterday....
This is the one! I used to listen to this so much, the anguish, pain and passion in his voice, it's primal, so raw, so desperate, so brilliant to be able to express this emotion, it must have taken him so much to do it, he had the support of his incredible band of course. We all feel these things but Artists can put them into tangible form which helps them and all of us not to feel alone and keeps us together. The Arts are and always will be a necessity to life and artists of all kinds are vulnerable souls who need looking after like children, they forget to eat, they don't know when they should rest, they don't want to miss anything, they can easily become unwell and down hearted. Give the artists in your life an extra hug today.



Sue came back at 2 and came with me to the Hospital, we were able to use a Palliative care parking space which was so helpful.


Mum is still with us but slowly shutting down, we are day four of no treatment and nil by mouth, she was asleep when we arrived and quite glassy eyed and not responsive like the other day when she woke, I found her old teddy bear from when she was little and showed her and have left him with her, I am not sure if she knew I had done it.  She is not moving her hands or body any more. She is comfortable and not in pain, we sat with her for two hours, we played her lots of music, the Carpenters, the Beatles, Beegees, Crystal Gayle even Ernie by Bennie Hill. I did a lot of crying today of course listening to all the lovely songs, Bridge Over Troubled Water was a poignant one and also Let It Be. 


The lovely Chaplain/Priest Judith came in, she had been to see Mum before we arrived and talked about Borneo where they have both been and also Findon in Worthing where they both used to live, Mum definitely recognised her, Judith told Mum she will pop by to see her again in the morning.


Sue and I rubbed rose scented hand cream on her hands and arms which was a gift from Sally.



Sue and I went for a coke and crisps and chocolate in Willow room (for people in our situation) and when we came back she was more with it and she was able to nod no when I asked if she was warm enough and yes when I asked if she wanted to watch tv. They have given her an extra blanket and put warm socks on her now and also closed the vents. We left her watching Pointless on BBC1.

I told her Tom and Jojy were coming tomorrow and I will also go but I didn’t know about Bonnie so didn’t say, the staff are still saying they can’t say when it will be but my feeling (based on nothing tangible) is that it won’t be long now.


Sue and I also had a long chat with lovely receptionist Lin about death, about Lin's Mum's passing, about her brother in law dying last week, about Sue's dad and Brother, Lin gave us a booklet on what to do when someone dies. I would rather read it now than after Mum goes so I already know what to expect and what I need to do.


Gulli is at a friend's house tonight so Max made a curry for me and Zebedee and we watched Death at a Funeral, I just want to watch death related programmes and comedy it seems, it helps me think. I watched Wild the other night about a woman trekking for months after losing her Mother. I watched Getting On with Jo Brand today in bed as well, an episode where an elderly lady is dying in hospital and her daughter has come down from Edinburgh to see her and wonders if she should stay or go... I am very grateful to be nearby and to be able to take this time to be with Mum.


I haven't said anywhere near as much as I could have publicly over the course of Mum's illness, I don't think I could have coped, there are those who know what it's been like for me, who have been there very step of the way, I have needed to be strong and live my own life along side her situation and it has been extremely hard. It feels right to open the floodgates at this point and allow people to offer me their love, help and support, to share their stories with me or just to let me know they are thinking of me. I am very touched by all of you, thank you.


Pictures are of Mum and Judith, Sue, me and Mum's old bear, Mum as a young woman and playing the piano which she did so well and always enjoyed.


I want to add a letter I wrote to a friend the other night after he wrote to me...


It's strange and hard to put into words but I can feel myself growing and becoming more real, I feel the essence of my Mother, who she is, who she has been in my life, I feel all the pain and sad times we've had and difficulties in our relationship ebbing away or rather I feel myself transcending them or diving below them to a deeper level where the love is, where she is the woman who gave me life, this couldn't have happened at any other time, it really is a journey, life is a journey and although everything is always here it is not always visible to us or understood. It's been incredibly hard supporting Mum throughout her illness from every point of view but I'm so thankful for the opportunity. Relationships are complicated and I've been frustrated and disappointed with my Mother over many things over the course of our lives but I have also treated her badly at times and taken her for granted, I have put her through a world of worry particularly when I was a teenager living a wild life which I can only really appreciate must have been unbearable for her now I am also a Mother. She has always been there when I needed her and never turned me away no matter what my circumstances  and seen me through some heartbreaking situations quietly and calmly, I've never felt judged by her, she's loved me unconditionally. We've never had particularly deep and meaningful conversations and we've never been especially demonstrative, we are not a mother and daughter who ever did each other's hair or walked round the shops arm in am.... but as you say the love is there and love may not always look like love or how we imagine love should be. She's never been one to say 'darling that's amazing' but she just always let me express myself, I was free to sing, dance, listen to music, she never really gushed with praise but she didn't stop me or criticise either. She's an artistic soul, she played piano by ear, also the accordion, she sang but never thought her voice was much good, it was better then she thought it was however, she could do any accent and mimic anyone to a T, she was extremely perceptive and had a great comic gift and sense of humour. When I was helping to clear out her house I found 20 copies of the local newspaper that she'd bought with my photo in it when I made a record at 17 and lots of clippings and cuttings about me through the years. Why couldn't she have verbalised how proud and pleased she was more over the years...  she often lacked confidence in her own opinion, worth and impact always, why I'm not entirely sure. We are who we are and we give what we can, we can only give if others receive and sometimes it doesn't flow, I love performing so much when the connection with the audience is open and there's nothing more uplifting and satisfying for me, that's when I feel most present or I should say it is a way I use to get myself into the present moment that never fails me, singing is a form of meditation and a transcendental transformative spiritual practice really.
I remember sitting by a stream in North Wales with Mum and my brother when I was probably about 8 and Tom was 6 and she said 'these are the idyllic days before we go our separate ways' I was so struck by the phrase and the feeling in that moment but I didn't really understand the full meaning at the time, I often think of it now as I experience my own children growing and changing and slipping through my hands, we can't hold on to any of it...  So as Mum and I come to the end of our journey together these are the things that remain, the love, the heartache, our story, what lies beneath, these are our last idyllic days, agonisingly beautiful, painfully sweet, exhaustingly raw and full of everything we are, it's a stripping away, a long goodbye, I'm so grateful to be able to be here and to have the strength and support in my life to cope with its magnitude. I feel very loved at this time and very close to everyone in a very real way.
Thankyou for writing to me and sharing your experiences of your Mother and giving me the opportunity to write this letter back to you, you have really helped me to see more clearly and add another piece of the puzzle.
I am comforted to hear that your Mother is always with you and that the bond remains, I won't know the feeling until it happens but it won't be long now.....