What We Waste

In wheel-chaired anticipation they gather and I will sing Carrickfergus for them –this posse of souls, eyes eternity-filled already, but no matter. It does not matter.

I find a note, difficult with the range of the song, and start to sing, transported to a time of used to be, when music rinsed my childhood with begrudging sweetness.

Afterwards somebody shouts, ‘Will you not sing Carrickfergus for us?’ as though the song had been already chewed up, regurgitated and made ready for repeat.

So I start again, not minding, at peace with an audience who cannot criticise or hold the notes in place for longer than a blink.

And in a room not far away my mother and sister with the open door of my throat swallowing their silence with song, and my mother’s whisper, like filigree, ‘That’s her. She used to have such a beautiful voice.’

13/7/2012: I’m going off on holiday for a couple of weeks George, so you’re in control now! PS Remember to give Lily some cold milk (also biscuits in the drawer need to be broken up to save Lily’s teeth, and water her plants). I trust you!

George called in – Lily in good form. I will try to remember all your instructions, Lynda.

3/8/2012: When I was sitting with Lily, L (the entertainment coordinator) arrived with a little RED HEN! And some chicks and a DUCK! So super for Lily to see that and be able to touch them. Thank you L. x

4/8/2012: George and Barbara called. We’ve left some money in the office for hair and feet ‘do’s’. Lily has run out of tights and a few other items of clothing – replacements coming soon. Together we completed the crossword in the Belfast Telegraph.

6/8/2012: Alice telling us that we’ll have a visit form a DONKEY later on. Eeeeh Yaaah!

28/8/2012: Barbara and George called in. Lily had just finished eating her dinner - everything eaten up. Lily now has 4 jumpers and she thinks it’s her birthday!

1/9/2012: Have put Lily’s name down for a trim, as she’s a bit shaggy at the moment!

3/9/2012: I asked for Lily to have her hair trimmed which was fortuitous as the hairdresser was in the building. She was quite happy to do as she was told (Lynda in teacher-mode today!)

10/9/2012: Lily had her glasses on and was sitting reading a book when I came in. She told me that Maude has gone abroad but I told her honestly that mummy had died. Sad.

13/9/2012: Lynda called in after a pretty tiring day at school with lots going on. I brought Lily a black cardi that belonged to mum and put Lily’s label on it.

3/10/2012: Thanks to both L and M for calling in to chat with Lily. We, the family, all appreciate this very much. I brought in Lily’s new memory box with a few new things to talk about. Lily very appreciative.

20/10/2012: Lynda called in after squash this morning. Lily looking good. A rather nice, mild day today. I read Lily’s bible to her and she liked that – Psalm 121 and 1 Corinthians 13.

8/11/2012: Lily looking weary again today. I can see a change in her lately. I’m here after a long day at school and feeling a bit like Lily! J has just come in and told me that Lily has a urinary tract infection which explains a lot about Lily’s lethargy. It’s the time of year for these things, I guess.

9/11/2012: Lily taken to hospital today – bloods low and she’s dehydrated. Not impressed with the nursing care she had on arrival and had to say something (although did not write a formal complaint). Lily in hospital for one week.

16/10/2012: Lily had not been left off by the ambulance yet when I arrived. It will be good to have her back in the home here again, where things are more familiar. George and Barbara to call later. The staff here are looking forward to having Lily back.��

17/10/2012: Had a chat with the ‘girls’ who have ‘coiffured’ and pampered Lily well.

25/10/2012: Lily’s birthday! Lynda and Farah visited and read Lily her cards. There is a cake waiting for later on, so maybe George and Barbara will be able to share some – yum yum!

9/12/21012: Lily says she’s ‘Waiting to say goodbye to everyone’.

18/12/2012: – 28/12/2012 (over Christmas) Tavakolis and Achesons all sick (norovirus) and had to stay away from the home.

2013

7/1/2013: Lynda called in after her first day back at school after the holidays. Lily very lop-sided on the bed but I fixed her up. Quite a mild day outside but it’s set to get colder, I expect. Lily very, very weary today and could hardly keep her eyes open – she is just simply tired of life at the moment and tells me that regularly.

Is this what I do?

On a corridor of fresh-painted magnolia sunbeams stroke from Velux windows onto freckled carpets, while a television talks too loudly to itself in someone’s room.

I find you sleeping, head sagged as on a mis-hung coat hanger, hair, just brushed, still full of war-time curls, a legacy that did not pass itself to me.

I say your name, see the reluctant wakening of your eyes, the disappointment you had not slept your way to heaven. You have told me this before.

Today we talk of blue dresses and funerals and how you love my coat, and how you love my coat, the colour redolent of something already scudding out of view.

You ask me now if this is what you do, just sit and wait, and wait and sit, the resignation in your voice the hardest thing for me to bear.

For in this room, that thief of time has measured out its false remembrance in the ticking of a clock, as the past becomes the present and the present loiters somewhere in the past.

10/1/2013: I’ve had a fairly ‘challenging’ day at school, shall we say. Lily’s leg is ‘progressing’, as she puts it. And also, her arm, so that’s good. As long as we’re all ‘progressing’!

5/3/2013: Yesterday I asked K to wash Lily’s hands, which she did, - plus tidied her nails. It isn’t anyone’s fault as Lily gets up to go to the loo herself but a very close eye needs to be shown towards the hygiene of her hands. Lily looks smart in her blue cardigan.

10/3/2013: George called in on his way back from The Mournes – very cold on the tops. I see Lily has a very colourful shawl. Brought her some flowers.

12/3/2013: Big turnaround with Lily today. She has succumbed to the sickness virus and is not well at all. I haven’t seen her looking so poorly since we took her to the hospital last year. Will phone you, George. Waiting for the GP to come now.

13/3/2013: Lily in hospital – she has a mixture of norovirus and a urinary tract infection (UTI).

28/3/2013: Called at lunchtime but not happy as Lily’s dinner was there and she was quite prone on the bed (dangerous for choking). Also, if I hadn’t given Lily her savoury food (she ate it all) she would only have taken dessert herself. I spoke to the nurse about it.

17/5/2013: E was very good about helping me this morning to change Lily but I had to speak to S about (a) Lily never being propped up straight when she’s given food, (b) A heavy jumper being put on Lily on a roasting hot day, (c) A dirty old apron being left on Lily’s bed, etc. Not good enough really, but E and S were helpful.

21/5/2013: When I called, Lily was trying to eat her lunch by herself – I’m not happy about this.

22/5/2013: Farah was here. Had a nice wee glass of milk and afternoon conversation about Royal babies!

23/5/2013: Farah again. Lily in good form. Told her we had a new prince!

12/8/2013: It’s nice and bright outside. Lily was in her nightie but I left a nice blue dress out for her to wear later, if she feels like it. The girls have put a special mat beside Lily’s bed that sets off some sort of warning sound when she gets out of bed.

20/8/2013: Lily has found out how to dodge the mat (she’s pretty smart at it) and wishing the Lord would take her home.

26/8/2013: Surprisingly, Lily said to me today, ‘I’ll make up my mind to be happy here’ – what a great philosophy for life.

5/9/2013: Lily a bit confused today and still in her night clothes. I put some body lotion on her arms as they were very dry – but her skin is like parchment.

28/9/2013: Lily had a fitful night and didn’t want to change out of her nightie. However, as it was noon and a lovely day, I thought she might have visitors, so I persuaded her to change into a dress. She was upset today about generally being still alive, so we talked about that. I am very honest with Lily when I talk about these things. When I left, she was more settled and probably hadn’t remembered anything I’d said.

23/10/2013: Lily unusually tired today. *George, I’ve come back in to write this as I only found it out on my way out. I’d noticed an oxygen cannister by Lily’s door, so asked one of the girls if she’d needed it. Then they told me that Lily had had a fall last night and the doctor was called out. Lily has a UTI which maybe explains her lethargy, but I’d like to have been informed – maybe they phoned you?

25/10/2013: George called - good to see Lily feeling a bit better. I spoke with the nurse in charge and asked that the home contact me if there was ever a concern. I also asked them to ensure that Lily was helped and encouraged at mealtimes but was assured that this was already the case.

Lily likes this little prayer written by an Alzheimer’s patient. It seems to bring her comfort, even though it is admitting her own confusion.

Dear Lord Jesus,

I don’t know who I am, I don’t know what I am I don’t know where I am, But please love me.

Taken from ‘Prayers from the Edge’ by Catherine Von Ruhland

27/10/2013: Lynda found Lily with a cold dinner in front of her. There was a chair pulled up beside the bed so perhaps someone had sat and tried to help her for a very short time but in the end, I gave her her pudding. However, she wouldn’t have had anything if I hadn’t come in. I’ll search for someone on my way out to have another word and try to arrange a meeting.

2/11/2013: Pretty chilly today and the roads were terrible this morning, too. Lily said to me today, ‘I’ve just got that feeling that I won’t be here for too much longer, and I’m ready to go now’.

10/11/2013: Remembrance Sunday. Siamak and Lynda called in. Lily was so pleased to see Siamak and lit up when he came in. Lily was in super form today and the best I’ve seen her for a while. ��

12/11/2013: Again, Lily told me that she’d be glad to be home, meaning her heavenly home (I assume). She’s looking forward to being there. We were going over old photographs and when I asked her who the woman was in one of the black and white ones, she remembered Daisy dog (but not me and Jean!) She keeps telling me she wants to die. Time must seem very long for her now, I suppose.

25/11/2013: LILY’S BIRTHDAY Lily got some nice cards and I bought her an orchid that she can look at every day. The colour of it is beautiful. I opened all of her cards for her but she wasn’t in a chatty mood at all. Nice, though, that people have kept in touch with the birthday greetings.

3/12/2013: Lily really doesn’t look well today and told me that she might die tonight. I asked the nurse to check her urine for a UTI to see if that was the problem. To be honest, Lily has just had enough of living and looks forward to going to heaven now. The girls changed her quilt to a nice fresh one for me.

2014

15/1/2014: Lynda called in after school and spoke to a nurse today who said I should have been told about a fall Lily had on Monday night. I’m annoyed about it because I specifically waited to see the nurse yesterday and she didn’t mention it at all. Anyway, today’s nurse is monitoring Lily’s BP etc and will phone the GP if necessary.

18/1/2014: Auxiliaries helped me lift Lily up a bit and to change her pants. I have a feeling that I’m being a pain to some people around here. I asked Lily to try and not get out of bed as she’ll fall, but the staff need to be vigilant, too. 1/2/2014: Lily says she’s ready for heaven.

5/2/2014: Lily’s under sheet not changed from yesterday, after I had asked. I realise that Lily puts up a fight about these things but it’s a question of hygiene. George - if you’re in today, I won’t be able to call until Saturday now, as my car is in the garage. Lily ate hardly any dinner and was unsupervised when I arrived – I was afraid for her with the fish bones. Sorry to be such a moan but these things are important.

8/2/2014: Envelope in the drawer for you, George, re Lily’s account. I think it needs to be topped up.

24/2/2014: Lily just tired of this ‘wearisome’ life but has to go with it, I guess. She looks forward to going to heaven which she hopes will be perfect, but that none of us know.

27/3/2014: Lily was asking me if she’d ever get home but we had a chat about how impossible that would be now. She accepts this.

20//5/2014: A very damp day outside – miserable and not that warm. I arrived when Lily was having her lunch but no one was with her and of course she wasn’t eating much. I don’t know – you mention these things so many times! Much of the time Lily’s food is in front of her, stone cold and I’m increasingly annoyed about it. What if she didn’t have us to be her voice?

29/5/2014: Dropped in after school. Lily was in the loo with the nurse there, waiting. The nurse was on her own taking Lily back to bed but really, I said, there should be 2 people doing this every time. I know it’s hard for them but I just detect a wee bit of an attitude when I say something these days (even if I try to do it diplomatically). Lily slept for most of the time and when she woke up she asked me, ’Do you know how long it will be until the Lord takes me?’

17/6/2014: I’m feeling sad today as it’s the anniversary of mummy’s death.

28/8/2014: *George, I’m very cross. I came in at 2.20 from school and Lily’s pudding was on the chest of drawers. I made my feelings known, but will talk to S on the way out. I couldn’t even find a spoon to feed Lily. This should never happen considering the discussions we had with the home last week. I’ve just spoken to L who is a really nice girl and says they are more or less struggling to cope with the demand at the moment. I totally sympathise, but we are Lily’s relatives and have a duty to see that she has the best of care. The wee auxiliary helpers are lovely as are most of the staff and they are all under such pressure.

8/9/2014: Hi George – I’m cross again (although I don’t want to be!) I’ll speak to you later.

Hi Lynda – the doctor called re Lily’s swollen ankle and he is arranging for her to go to hospital. We went over and took her to A&E and she has a broken bone in her foot.

11//9/2014: George and Barbara called in about 4.45 - a dirty kidney dish from Monday night was still on Lily’s bedside table – I removed.

12/9/2014: 4pm. Meeting took place with management – all points mentioned and acknowledged. We will write officially to the company who run the home and to the Health Trust.

13/9/2014: Siamak and Lynda called. Lily knew both our names and said them clearly when we came in (she’s always delighted to see Siamak!)

16/9/2014: Lily told me she’d ‘had it’.

19/9/2014: Lily asked me not to go away today. Huge effort for her to talk today.

20/9/2014: Lily becoming increasingly weaker and can’t really talk. Things not good next door either with David in mummy’s old room. David died at 3.30. Sad times.

4/10/2014: I attended David’s funeral which is how you’d like a funeral to be – not much religion and a lot about a life. The family are lovely and Derriaghy church is beautiful.

21/10/2014: George and Barbara took Lily to the Lagan Valley Hospital to get her cast removed. The physio worked with her for a while and he will get in touch with the home soon. Lily will need the support of 2 people with walking and moving. Lynda called in a bit later and Lily was resting but she couldn’t remember being at the hospital. She said that she was very cold in bed last night so I’ll mention it to the girls when I leave.

8/11/2014: The first thing Lily said to me today was, ‘I wish I could die and get away’. We had a bit of a discussion about it being out of her (or anyone’s) hands. Horrible day outside.

10/11/2014: Hi George - I read the letter from the home that you left regarding Lily’s fall and think that the response was fair enough. It’s rare that you get people to ‘put their hands up’ when they’re in the wrong. Refreshing.

15/11/2014: Lynda called in. Lily was looking (and feeling) very tired today. She was sitting very awkwardly with 2 pillows behind her head but bent forward. When she spoke to me, I had a feeling that she may have had a TIA (transient ischemic attack) as her speech was a bit slow. I called P in and they are going to keep an eye on this. It may have been the position of Lily’s neck … however, she seems very tired today and very different from 2 days ago. Funny, she asked me to put on her blue dress and she talked about her mother, father and mummy, and said she was ready to go. ‘I wish I could sleep out this life’ she said, ‘but don’t have any funeral for me’ – so we talked about that before I left. I’m finding it difficult.

16/12/2014: Lily had visitors from Fivemiletown today and she was able to recognise her old doctor apparently. It’s lovely that she still gets visitors from the past. I gave her her lunch – very little – only 2 scoops of ice-cream.

31/12/2014: Last day of the year and Lily is looking well, I’m pleased to say. She had had her hair done nicely and was happy to see me. I must see about providing a new diary now. Happy new year, one and all.

2015

1/1/2015: The first day of another year. 2015 and Lily can hardly believe it (and neither can I). Also, Siamak’s birthday. The roads are nearly empty this morning. Lily looking okay but sleepy.

13/1/2015: Where do all the pens go? I brought half a dozen before Christmas. Maybe Lily eats them!

16/1/2015: The doctor was here when I arrived at 1.30. Lily had a lot of blood in her urine. The doctor was very nice and the home staff are following instructions to try and keep Lily out of hospital, if possible. I’ll try to phone you later, George.

George and Barbara called at 4.30. It’s important that Lily drinks fluid. She was not assisted when trying to eat her tea and we drew this to the nurse’s attention.

19/1/2015: Still some blood in Lily’s urine and the doctor will be called tomorrow (Monday).

21/1/2015: George called in at 2.15. Lily had just been sick and doesn’t look too well and has a temperature.

22/1/2015: Lily died today. I hope we did our best. Sad.

after the funeral an atlas on the table open at Africa you were always hoping to see other worlds

Jean James

Lily’s Place

Its two-up, two-down walls have hunched their mortared backs, a poach of creepers too long now in the making for any redemption. Outside, a fence she painted green, always forest one year fern the next, leans a last resistance to neglect it did not ask for, nor expect. And here is me, standing at her closed front door, remembering.

A Rayburn stove, born the same year as me, I was always told, will still stand sentry in the parlour, a freckling of black spit on the carpet, reminders of its choked-out innards and too many overlooked close-calls. But there will be a bible there to save her, and the tracts, and church envelopes, and the charity appeals that kept on coming every time she sent them more.

There’s the cuckoo clock above the chair she sat in, its voice lost to overuse sometime in 1966, its game little body continuing to poke a presence for years afterwards. There will be that oldie smell that sucked into my child’s bones and made a home there even when I left. And there will be the scullery of coldness and oldness and nothing much besides.

If I take the stairs my feet might pause upon the second tread, a thinning carpet, bulging banknotes (for emergencies or birthdays), and any self-respecting burglar’s dream. Follow, then, the spoor of daisied paper weeping from the walls and find her tiny bedroom, long ago resigned to her frugality – a bed, a chest of drawers, a quiet harbour for the soul.

And here is me, standing at her closed front door, remembering the moment when she asked me where she was and who was I. Remembering the day I closed this old front door and turned the lock. But most of all remembering, in that other place, the time I asked her what she thought about and she said, home.