2002

Eight years ago now. This story had already begun. I was concerned by Mum's vulnerability, but I had no idea... no idea....

ANITA 14th October 1928 - 15th November 2010

7:48pm, I was heading towards the pharmacy aisle in the Supermarket when my phone rang. It was Mum’s Care Home. I’d already had a couple of updates on Mum’s condition since Mum was discharged from Hospital, so I wasn’t overly alarmed.

The Carer, H, began by telling me that Mum wasn’t well just now, that she’d suffered vomiting and diarrhoea earlier today. My heart sank a little, but I still didn’t guess what was coming.

“I took your Mum some tea to drink in her room at 6:50. I checked in again at 7:20 and she wasn’t breathing.”

I sat down on the floor.

“The Paramedics are with her now,” H said, her voice breaking into a sob. “They’re doing CPR on her, but haven’t been able to get her breathing so far.”

“So, it’s been longer than 30 minutes since she stopped breathing?”

“Yes.”

I felt numb and very, very calm, as is my custom in a crisis. It’s a practical trait but I always feel self-conscious about how cold it might appear to others. I told ‘H’ that I needed a moment to collect my thoughts. I told her that I was very sorry, since she was obviously so upset. I asked her what she thought I should do. She told me to wait and that she would ring again when they had news, maybe in 10 minutes.

I walked home and then rang the Care Home to tell them that I was going to drive over. ‘H’ told me that the Paramedics had ceased their attempts to resuscitate Mum. I asked her what the procedure was now and she explained that the Police would have to be called, since this was classed as a sudden unexplained death. Then the Undertakers would take Mum to the Hospital.

I asked that they delay until I got there, and I quickly packed a bag and drove over the Pennines.

‘H’ sat me down and warned me that I would find Mum still intubated (as an avid viewer of hospital dramas, I had anticipated this). Once I was ready, we entered Mum’s bedroom. The radio on her bedside table was tuned to Classic FM, and they were playing the Adagietto from Mahler’s 5^th Symphony, the piece used for the movie “Death in Venice”. I thought the radio was a lovely gesture. Mum was there in bed, sort of. I find I’m having trouble these days recognising faces, and Mum’s face looked smaller and most unfamiliar. She looked like a bit like a waxwork, but with an unconvincing blue/grey pallor. As I reached the end of the bed, I thought she’d opened an eye at me and was conscious, but it was just that one of her eyelids was slightly open, and my change of angle had made this look like it had just happened.

I asked ‘H’ to tell me about Mum’s last day, and we sat and reminisced for a few minutes. Then ‘H’ asked me if I wanted to be alone with Mum and I said yes.

Once alone, I sat closer to Mum and tried to talk to her. I stumbled over a few clichés about hoping that she was at peace now, and so on. Then I wanted to feel whether she was cold and I placed a hand on her forehead. The top of her head didn’t feel cold, but maybe the forehead was slightly colder than it ought to be… I wasn’t sure. I took some photos of Mum lying there. It felt horribly wrong, but I knew I wasn't quite "in the moment" and that I would need to see her again to absorb this. Then I pulled back the cover slightly and reached for her right hand and took it in mine, manipulating her fingers so that we were clasping each other’s hands. I don’t recall what I said then, but it felt more honest and meaningful. I put her hand back just as ‘H’ returned to tell me that the Undertakers had arrived. She tactfully suggested that I leave them to their work, and I guessed that Mum might have voided her bowels or something in the hours since death and that ‘H’ was kindly trying to preserve my last memory of her. I went back to the Lounge and answered the Police Officer’s questions. Before long, the Undertakers were wheeling their trolley back through the Lounge with Mum in a body bag. I could make out the place where the material was tight over Mum’s nose – a surreal moment trying to determine the contours of my Mother’s face through polyester. Then she was gone.

It looks like there will have to be an autopsy, since Mum wasn’t seen by a GP within the past 7 days (Hospital Doctors “don’t count”, apparently, and won’t sign a Death Certificate in any case). I will have to correspond with the Coroner to arrange the funeral details once he has released her body later in the week.

I am in shock, I think. I am still feeling very calm and I’ve been able to say some very rational things to the people here about how it’s comforting to know that Mum died quickly “at home” and without suffering a long-drawn out death in Hospital. I know she was glad to be back in familiar surroundings and that she died sitting in the chair by her window, where she always told me that she enjoyed listening to the birds outside. I just wish I’d been perceptive enough to see this coming, that I’d consciously said my goodbyes to Mum whilst she was alive, if that makes any sense.

Perhaps I’m calm because I’ve already done my grieving for Mum. Over the past 3 years I’ve come to terms with her loss because her Self, her deliberate Self, the Mother I knew, was already gone. I took guardianship of the helpless, happy, loving, child who took her place for a time. And doing that forced me to grow up a little. It forced me to give something back. It helped me adjust my opinion of myself just a little bit to the positive. I did some good things for Mum and gave her peace of mind and security and care when she needed it. And that gives me some peace of mind, too.

She left me, as graceful in her departure as she was throughout her life. I’m grateful to her for all of this.

Thank you, Mum.

poetry on ward 3

It's Mum's last full day in Hospital today. When I arrive, she smiles at me and asks: "Didn't you know I was in here?"

She doesn't remember my other visits. I take comfort from the thought that at least she knows she is in a Hospital today.

She is shaking again, though she tells me that she is warm. I know that tremors can be a sign of advancing dementia, but I suspect she is just nervous. My presence here is frightening because she knows that I will find her out, that I know her well enough to notice that something is wrong. For years she has been hiding a growing problem, with varying degrees of success, but she suspects that it's obvious now, that the task of hiding it is beyond her capabilities.

I try to get her to sit up, to face me, but she remains curled up on her left side, staring fixedly at the Nurses' Station just beyond the entrance to the ward. Whenever I say anything, her gaze flickers to me and then back. Her face is set in an anxious grimace. It's like she's waiting for something or someone to arrive. Not me.

The Consultant visits us, a young Canadian, and he is rewarded with her rapt attention. I take the opportunity to ask about her condition, about the tremors. There are no definitive answers. He is content for her to move on tomorrow.

I stroke her hand. She seems to like that. Soon her eyelids are drooping and she is asleep.

There are 3 other ladies in the room, having a conversation about favourite remembered poetry. The one who seems the most far gone into dementia keeps stating over and over that she loves "the one with the host of golden daffodils". The other two attempt to recall the words. When they progress to talking of their own favourites, the first lady brings them back to Wordsworth's "Daffodils".

After a few minutes of this, I get up quietly and visit the Nurses' Station to ask if I might access the internet. I google the poem, print it, and take it back to the ladies. They are thrilled to have someone do something for them. The first lady is unable to read, so I offer to recite it to the room. By the time I'm finished, all three are in tears.

I wish Mum had seen this. I know she would have been proud.

I was proud of myself. Not just for doing something nice for the ladies, but for keeping my voice steady whilst reading a line I had forgotten: "A poet could not but be gay..."

update

Mum was expected to be in hospital only a few days. She is still there.

On days when I haven't been able to visit, I've rung the ward where Mum is convalescing. The usual routine is that I ask the Staff Nurse how Mum is doing. The Nurse fails to recognise Mum's name. The Hospital staff are calling her by her first name, which Mum has never used and to which she doesn't respond. No matter how many times I correct this, they haven't altered their information in 2 weeks.

Then, when I ask again, the Nurse puts the phone down before I finish and goes to speak to Mum, who of course says that everything is fine, which the Nurse reports back to me. I then have to inform the Nurse that Mum has dementia and is hardly a reliable source, and that I was asking about the progress of her recovery and not her mood.

When I called a few days ago, the news I got back was alarming:

"Oh yes, we've had someone in to assess your Mother for Nursing Care and we're attempting to place her in a Home."
"Excuse me?"
"We've assessed her as unable to walk, so we need to find her a Home."
"She's IN a Care Home ALREADY."
"Ah......... er......"

The phone was handed to someone else, who repeated the above statements. She explained that my Mother's Care Home is listed in their records as a "Residential Home". I took the opportunity to correct this misperception and informed them that the Home is more than adequately equipped to deal with Mum and that there is a dedicated Nursing floor in the building, should nursing be required. I got the distinct impression that I was being humoured at this point.

I rang the Care Home in a state of panic. They reassured me that Mum could not be taken off their hands without their own assessment taking place first. The member of staff, who sees Mum regularly, told me that Mum is often uncooperative with people she doesn't know and that, in her opinion, Mum was probably unwilling to trust the strangers who were attempting to get her to walk. She said that she had seen Mum refuse unfamiliar Care Workers in the Home.

Just as my blood pressure was returning to normal, however, the member of staff said: "We'll make our own assessment and decide then whether she can come back onto the household."

I was perplexed because Mum being unable to walk isn't a new situation. She was in a wheelchair for a few months back in 2008, around the time of her 80th birthday. After that, the local GP gave her some cortisone shots to her knees and Mum was able to walk with relative ease almost immediately. When Mum's knees started to trouble her again this year, I requested that the shots be repeated, but this wasn't done. I couldn't understand why this same situation was now threatening a change of environment. The member of staff informed me that fees for the Nursing floor were substantially higher, upwards of £900 per week. My heart sank. The fees for Mum are currently £625 per week and her income is £400. Taking on a shortfall of £500 per week would mean that we would run through Mum's capital quickly.

I experienced a lot of paranoid thoughts at this point. I thought that the Home was probably seeking to maximise profits by taking the opportunity of Mum's assessment to charge more, even though she has been in the same condition in the past with no question of changing her care. Then I started to worry that this was all MY fault, because I had informed the Home of the reason for Mum's infection - the inadequate hydration regime. I felt that we were being persecuted now for daring to criticise.

I despaired and sank into helpless inactivity.

Today, the acting Manager of the Care Home telephoned me to inform me of the Nursing assessment, unsure if I had been informed. I questioned her vigorously on her reasons for treating Mum differently this time and she was obviously surprised to hear that Mum has been in precisely this state before without anyone changing her status. She told me that since 2 other residents on the household were now also in need of nursing care, Mum's change of status would be too much for the team to handle and that Mum would have to return to the Home on the Nursing floor.

"So the other 2 people get to stay in their familiar surroundings and Mum is penalised?"
"Not penalised... but moved."

I went into a long explanation of our finances and she eventually reassured me that the increase in fees would be met by a Local Authority subsidy of £108, although I was not at all convinced that £625 + £108 = £900. It turns out that newcomers to the Home are being charged £795 per week and that Mum benefits from a discount for having been there from the start. The £108 is based upon the discrepancy between £795 and £900. The Manager assured me that we would not notice a hike in our payments if Mum was assessed as requiring a move to the Nursing floor.

After much grizzling from me, we eventually agreed on Mum coming back to her familiar surroundings for 2 weeks, giving her a chance to feel at home and possibly receive cortisone shots to her knees. After this 2 weeks, the assessment will be made about her future.

I'm visiting the Hospital and the Care Home tomorrow.