Lying quietly in her bed, the morphine pump doing its work to keep her free of pain, Aunt sleeps peacefully.
The pain, we think, is due to the fact that she fell out of bed sometime in the night and was discovered by Linda first thing this morning, lying on the floor, her head under the bed. The ambulance arrived in four minutes. It would have been three but the paramedics couldn’t get through the front door.
When Linda told me this just as I was about to leave home for the coach, I was whispering “oh no, oh no, oh no”, sure that Linda was about to tell me Aunt had been taken to hospital. But no. The wonderful paramedics checked her carefully and got her comfortable in bed once more. But she must have bruised herself, because she was wincing and grimacing in pain. Something the cancer has never caused her to do. So this afternoon, the community team arrived and set her up with a morphine pump that is keeping a steady flow of pain relief flowing into her. Continue reading
The nurse said it would be better to come as soon as possible, rather than wait until the weekend. So some work has been cancelled, a seat booked for the coach, and only then did I wonder who would be looking after Himself. My panic levels rose as I left texts and got negatives for answers. Fortunately J&B, with whom MasterB bonded so well over Christmas, declared themselves up for the task. I have written the notes, stocked up the biscuit container (his, not theirs), and started to pack my bag.
Aunt, who was so wonderfully alive last week, is fading. She is now bedridden; too weak to support her own weight; unable to keep fluids down. She has, finally, agreed to care, and forms are being hastily filled to apply for funding so that she gets the attention she needs. Tonight she is on her own. A risk. But she has slept most of today and seems unlikely to stir much in the night.
Yesterday I had a conversation with one of the visiting community team. She was loud about her duty of care, about how Aunt would be safer in the hospice, how these things needed to be considered, and Aunt’s stated desire to stay at home could be overruled in her best interests.
I politely disagreed, saying that to my mind to move Aunt now would be an act of cruelty. Yes, the care would be better, yes she would be safer, but what she wants is to die at home with her friends near her. Continue reading
When Mother was ill in hospital she said she wanted to die. She said it again at various times when anxiety, fear and dementia overwhelmed her.
Listening to Aunt, what I hear is her desire to live. I told her today that I don’t think she’s dying now. She is someone with too firm a grip on life. Maybe that was why she sent me out to buy her some wafer thin ham and bread rolls. I confess I was surprised by this request, but not as surprised as the Specialist Nurse when I told her of my shopping list.
“Not for her,” she said. Her words were more a statement than a question. I skipped the bit about being vegetarian, and said, “Yes, for her. She says she’ll nibble them.”
The SN, so surprised she nearly forgot her professionalism, told me Aunt was amazing and that she astounded that she was still alive. I’ll leave you to sort out which she is which there. I am confident you’ll cope.
A similar tale with the Hospice Nurses who have been so used to being rejected by Aunt that they now just ‘drop in’ if they are near. “She’s a very determined lady,” they said. “Yes,” I said, thinking that if they had met the clan en masse it might have been an experience from which they would not have recovered.
Cousin and I have often said that Mother and her siblings, who of course include Cousin’s father, my Uncle Tommy, were a difficult bunch. One of my first school reports said I was determined to the point of defiance. Mother loved to quote it, I think she saw it as meaning I was cut from the same stone as she was.
But I have kept you waiting. Here are two photos of Aunt today. The first shows her looking very severe, though I think she was looking at photos of MasterB who she loves, which I had just put on her tablet. Though thinking about it, it may have been when she scrolled back to look at our various outings over two summers. When she saw the photo later, she looked at it in surprise. “I bet you didn’t think you could look so stern,” I said.
The second is marred by shadow, but the smile is there, so is the bruise on her head. I have tried to tell her that she has a global fandom, but I don’t think she’s taken it on board. Not sure how to progress that one.
We listened to Lemn Sissay on Desert Island Discs and she loved his voice. She gasped when he spoke about how his foster parents were told to consider the placement an adoption, and I should like her to hear it again, maybe in bits, and to hear her comments on his story.
No, she is most definitely still alive.
She was better than I dared hope, and her surprised reaction, her face breaking into a delighted smile when she saw me, was worth millions. I had brought three bottles of her favourite fruit juice, M&S’ Kale and Mango. It looks like water from a particularly scummy pond, but tastes like heaven.
By the time I left, shortly after four this afternoon, there was very little of the 750ml left in the first bottle. If you can drink a bottle a day I said, and she refrained from telling me I was being bossy, it should keep you hydrated and ward off UTIs. They are the things we have to watch out for, they’ll make you fall. And you feel dreadful, she added, showing me that what I told her was nothing she didn’t know already.
It was extremely difficult to broach the carer conversation. But about an hour before I left I managed it. I had been speaking to one of the community nursing team, repeating my fear that Aunt will develop pressure sores on her heels. She raised the subject of carers. I explained how Aunt and I had both been less than impressed by some of Mother’s carers. I gave examples. The nurse tutted and said she saw what I meant.
How are you today? I asked.
Weak, said Aunt. I never thought I’d feel this way; just raising my arm wears me out.
So we talked about changing priorities; about how the main goal is for her to stay at home and for the first time she seemed to welcome the idea of carers.
I promised to call the Specialist Nurse tomorrow to see what we could do.
Thank-you, said Aunt. Continue reading
I spoke to Aunt this afternoon. She sounded well, cheerful, very together. We talked about the weather, the gradually lengthening days, hyacinth bulbs, the promise of spring. We wished each other a happy new year.
We didn’t talk about the fall she had a couple of days ago and the bruise on her head. We didn’t talk about the phone calls she made to my mobile and my landline from half past four this morning until the noise of the ringing phone finally woke me up to listen to a series of scared and disorientated messages. I’m glad I heard the messages before she called me again, as disturbing though they were, they gave me some insight into what was going on in her mind.
I know she knows about the fall, because she talked about it with Linda this morning. I am less convinced she remembers the ‘phone calls and her fear that she ‘had spoiled everything’, that she had lost me and could not find me, however much she searched.
I wonder if her belief that I had been with her and then had unaccountably disappeared was triggered by yesterday’s conversation when I said I should be visiting just as soon as I get three days off together. So today I said nothing about looking at the possibility of coming up by coach one evening and going home the next.
Linda and I talked for a long time tonight. Aunt called Linda when she fell and Linda, still in her pyjamas, raced to be by her side, to dial 111 and get paramedics out to see her, staying with her from midnight until four in the morning. Aunt doesn’t want me, or anyone to know she fell, but the bruise on her head is apparently very obvious, so I will notice. She told Linda it was to be their secret. This makes me very uncomfortable. I am glad Linda tells me, because these ‘secrets’ help no one, and I could almost be cross with Aunt for leaning on Linda in this way. It’s not fair. Continue reading
Still smiling, but thinner.
I’ll try taking a picture of her tomorrow and you’ll see her smile is just the same, but I thought I could see the skull beneath the skin before, yet when I first saw her today I was shocked.
Hours in her company have done their work and now I see she’s still Aunt, but I do wonder how much longer she can continue like this. She’s wrapped in layers of warm clothing, the central heating supplemented by a clever Dyson machine her friend gave her. I brought various fruit juices for her to try. The anti sickness tablets are helping her to keep food down, but as she explained, she isn’t much interested in eating or drinking. I think she’s shutting down. Certainly she is sleeping much more, and her mind is not so clear. She is forgetful, muddled. But that doesn’t stop her being independent.
Maybe my opinion will change tomorrow, but tonight I am wondering if this is the last time I shall see her. A good friend of hers who is also frail will spend Christmas Day with her. There will be visits from members of her church who have stayed loyal to her over these months when she has been unable to attend. She hasn’t written any cards, and she hasn’t put up the ones she has received.