Letting go into each moment. Practicing for the dying moment
Sweet mystery: I am ready. I want no more from you now: not an immortal soul not a promised land not a sacred goal not your guiding hand not to remain not a transcendent view not to come again in the morning dew not an absolute confess in a cleansing rain not your forgiveness not an end to pain nor to fear, nor strife not an impregnable peace not a bargain for life not a joyful release not a brand new start not to merge with you or know we were never apart not to understand you neither an end, nor no end not any thing, or no thing ... I am ready. Awake. I take off my clothes and prostrate myself flat to the ground with no agenda and in full surrender: worshipfully, gratefully.
The picture on the wall.
St Vincent’s has mock Tudor facades set around a large car park. A man in his early 20s comes with me in the lift. ‘He worries all the time’ he says loudly as we step out onto a tough red pile carpet.
Greg has been here a year now. His wife, Rose, is also here. She has Alzheimers. The last time I saw them was 18 months ago when they were still at home. Both looked fit then. They were talking easily, walking, driving – no sign of Alzheimers or physical disability .
The young man tells me that Greg is having his tea and leads me down a corridor to wait. As we pass the dining room I think I recognise Greg’s acutely bent back. I wonder should I greet him and why I am not being invited to sit with him.
The corridor has wooden bannisters on both sides, emergency lights, alarms, fire hydrants, smoke detectors, fire and escape notices with pictures of running figures. The carpet is trammelled like a railway junction with a network of vacuum cleaner wheel marks. There’s a smell of disinfectant, polish and over-boiled vegetables. We reach a small alcove by Greg’s room and I sit down to wait on the edge of a smartly upholstered armchair.
Screwed to the wall opposite me is a picture of an autumn scene. Well-manicured trees on either side of a wet path that twists off to a vanishing point beside two blushed out Cyprus trees. The path has puddles on it that are shining in the sunlight. Strangely the four edges of the picture have broad brown shading – about three inches wide – as if the artist wanted to convey the impression that the frame is contracting.
In the distance I can hear the loud voices of the care staff – mostly instructing the residents what to do. I wait about 10 minutes, reflecting on my friendship with Greg and Rose. They are nearly four decades older than me but we have always been close…..
At last a wheelchair emerges at the end of the corridor, pushed by a care assistant. The figure in it must be Greg. As he gets closer we wave to one another. He looks so much frailer: thin white hair, red rimmed eyes, his head smaller, brow furrowed, skin loose. We shake hands awkwardly with him still sitting.
The care assistant and myself help him out of the wheelchair into a high backed chair with a taut felty cream covering. It is under the picture. It takes an age to move him. He is clearly having great difficulty standing and we have to hold him up as he eases across the few inches in order to slump back into the chair. I take his hand. I had no idea he was this weak.
“This is dire’, he says once he has regained his breath “I didn’t plan it this way”.
“How long have you been so weak?”
“About 2-3 months, it happened fast”
His voice seems squeezed out of deflated lungs.
“What do the doctors think has happened”.
“Nothing – just muscle wastage”
“What? – there’s no condition – it’s just that you are old?” I am mystified.
Our eyes make contact and I notice that his are the lightest blue. They seem washed of colour.
“And how are you otherwise?”
“Not good”, he says, leaning his head back on the chair and closing his eyes. “Rose has Alzheimer’s”
“I know, where is she?”
“Over the other side, in the wing”
“Do you see her much?”
“Sometimes. It’s hard. I could cry buckets”
“That would be OK with me”, I say, my own eyes watering.
“The trouble is I can’t – and I haven’t”
We search each other’s faces in the pause. The rims of his eyes are crimson and his lips light purple. I am struck again that his head is so much smaller – as if his flesh has become fluid, tight and thin over the top of his skull, and in large lopsided drips below his chin.
“Can you help me into my jacket?” he asks
“Of course”. We struggle with the mechanics of that for a couple of minutes. I hold him upright with one arm whilst I tuck the jacket down behind him. The jacket is familiar – which is reassuring – I realise that I am hungry for reassurance that none of his essence is lost.
“I’m sorry it’s taken me so long to visit” I say “I feel guilty”
“I don’t want you to feel guilty” he says. This is the old Greg, I’m relieved. Then: “I want to scream out loud ‘don’t do it’”
“What do you mean?”
“At God, don’t do it, nuclear war.”
“I don’t think that will happen, Greg”
“No”, he looks at me like I’m an expert and he’s ignorant.
At that moment Rose appears in the corridor. She seems to recognise me and we hug. Then she looks searchingly in my eyes. I catch her confusion.
“Yes? From the Samaritans?”
“No, from Social Services”
“Oh yes” she says, without conviction, turning to Greg “Now Greg: are you warm enough?” She looks at me conspiringly. “He can’t look after himself any more.” She sits down next to me, then suddenly says: “I must go in a moment, I’m very tired…..are you warm enough Greg?”
“Yes”. He says it angrily, like he’s in a corner.
I remember the times that the three of us have sat together at their house – ‘the haven’ around a real fire. Then Rose would bring small bits of cake, tea and biscuits and ask penetrating questions. We would discuss together the troubles of the world and share news about our families. Good times together.
I ask her: “how’s your part of the home?”
“Hard, – it’s all about the colour of the carpets. My carpet is green. Greg’s is red. They’re always telling me I’m on the wrong colour – that I must get back to the green.” I am wondering if this is fantasy.
“I must go now” she says suddenly and walks off down the corridor. When she’s out of sight I say:
“She doesn’t seem quite as bad as I was expecting, Greg”
“No, but sometimes she is” he says ominously. “I’ve messed it all up.”
“Does she always remember who you are?”
“Sometimes she forgets”. He seems reluctant to say more – and again I’m picking up his anger.
“Things are in a terrible state” he says
“Do you get many visitors?”
“Yes, my family have been very good”.
“How often do they come?”
“Once every couple of weeks.”
We settle into a short silence. “This is a dreadful place” he says.
“Are the staff unkind?”
“They’re OK. Except for the night staff – he has to be male of course. It’s a dire end.” He pauses as if the sentence has been too long. “I’m too tired”,
“Do you want me to go?”
“No, I’m glad to see you.”
“And I’m glad to see you.” I squeeze his hand.
“Not like this.”
“No, not like this, it saddens me to see you so compromised physically and apparently so unhappy, I’m sad about that. But I’m still glad to see you”. We are making a lot of eye contact. “You’ve been a good friend, Greg, you’ve supported me a lot in the past.” I notice with dismay that I am putting him into the past tense.
“And you’ve been a good friend to me” he says, though I wonder if he really remembers. “There’s nothing left for me now though, except the end.”
I sense he doesn’t want me to avoid the elephant in the room “Are you frightened of dying?”
“No, just apprehensive.”
His head falls back on the high head rest and he closes his eyes. A nurse comes down the corridor and announces her presence. “Good evening, Greg”. From a small trolley she prepares three paracetamol, a tinyl plastic cup with some orange liquid in it, a glass of water and a custard cream. “time for your medication”.
“Is that for the pain?” I ask him.
“And does it hurt?”
The nurse gives him the pills and holds the glass as he sips shakily. It seems that even just taking a pill is now complex and hard. She helps him tilt back the plastic cup on his purple lower lip.
“He’s not the Greg he was” she says in a side whisper to me. I wonder if Greg can hear. Finally he’s given the custard cream biscuit which he eats in tiny nibbles as the nurse moves on down the corridor.
“That was hard” he says.
“What? Taking the medicine?”
“It must be hard for you also when people are patronising?”
“Yes, though you get used to it. I try to do the things they tell me to do. I don’t always manage.”
Rose is coming back down the corridor, walking quite fast, behind a zimmer frame.
“I brought this for you Greg” she parks the zimmer frame “are you warm enough dear?”
“Yes” again that odd quality to his response. Is it resentment?
“He can’t look after himself very well” she says to me as an aside. “I must go now as I’m tired.” I say goodbye again and she walks off without the zimmer. I’m struck by the contrast in their abilities.
After she is out of sight Greg says:
“This is a wretched place to be”
“You mean the home?”
“Everything”. Then he says “I expect you need to go now, back to your family”.
“Not yet, Greg, I’m OK for now, unless you want me to go, just say if you do.”
“I’m glad you are here”
“And I’m glad to be here”
“But I have nothing useful left to say anymore”
I let this in. He is so direct. He always spoke it as it is. I wouldn’t have it otherwise. I say: “well you don’t have to say anything useful, it’s helpful for me just to be here.”
He looks at me silently, eyes glistening. There is not the trace of a smile on his face. “can you help me to my room?”
“Of course” I help him to stand, one of my hands under his arm pit, the other under his arm. He pauses before rising shakily as if summoning the energy to do so from another world. And now he is standing and holding onto the zimmer. It gets stuck behind a chair leg. He doesn’t seem to notice as I help the frame around. Eventually we get into his room.
“What now?” I say. “You have to tell me what to do.”
“I need to sit down in that chair” he says without conviction. It is as if he is not used to deciding for himself. This time I hold on more at the point that he falls back into the chair and think to myself that I am learning new skills.
“I have never done this before” I say.
“What do you want me to do now?” I ask
There’s a pause whilst he looks at the carpet. The room is barren except for a coloured blanket on the bed, an old fashioned radio, one or two photographs and some clothes hanging up on a peg by the door. There isn’t much that defines ‘Greg’. It is almost just a room, in a ward, in a hospital.
“You could get me my pyjamas”
“Where are they?”
“In the laundry, – I soiled them last night”. This is new information. I wonder if I understood correctly.
“Where are your new pyjamas?”
“I don’t have any – I only have one set”
“What? You can’t have only one set of pyjamas”
“Yes, I didn’t plan it very well.”
“It’s not your fault, Greg.” I am appalled that he only has one set of pyjamas. But is it easier to get angry at the home than to grieve at the situation?
“You need to ask the nurse to get them from the laundry. She’s down the corridor”
I go down the corridor and ask the nurse who says she will bring them. When I get back Greg looks me in the eye.
“Will you help me into bed”
“Yes, if you want me to, but I haven’t done this kind of thing before, you need to tell me what to do.”
Greg tells me to take off his jacket, which I do, then the nurse comes in with his pyjamas.
“They look fine”, I say stupidly
“But you need another pair – it’s ridiculous having only one pair. I’ll buy you some more….”
“Thanks, I’ll pay you for it.”
“No, there’s no need”, and I think to myself: perhaps I should let him pay, otherwise he might feel disempowered, on the other hand it gives me a chance to be a friend..
“Is there anything else you need.”
“A vest.” No hesitation there.
“I’ll get that too then.”
“Do you want me to help you off with your shirt now then?”
Gently I unbutton his shirt. His skin beneath is white and sagging in deep folds, stomach protruding. It is botchy with veins and melanoma, he is old, old.
“How old are you Greg” I ask gently
I hold him upright in the chair and ease the shirt off him. Then I help him on with his pyjama tops.
“What do you want me to do now?”
“Help me to the toilet.”
I help him to stand, manoeuvre him on to the zimmer, negotiate with him and the zimmer around the single bed. It is tricky because the room is about as small as it could viably be.
In contrast the toilet is almost as big as the bedroom with complex structures of disabled railing around the toilet and shower. Finally we get to the toilet and I ask:
“What would you like me to do now, Greg?”
“Take my clothes off. I wouldn’t normally ask.” He adds “It’s not really your call of duty”
“It’s OK” I answer uncertainly, I am wondering now how this will end.
I help him off with his trousers. This is harder than I would have thought. I am reaching through the zimmer frame. His legs are swollen, shiny and in contrast to his upper torso. His trousers snag up on his feet and I have to slide them out from under him one foot at a time. I notice that there is an incontinence pad under his underpants. Clumsily, I wrestle the trousers away.
“What do you want me to do now?”
“Take my pants off”
I needed to be sure. I help him out of these too. The incontinence pad is like a nappy only doesn’t seem to have any device to stick it together. It is held in place purely by his underpants. I notice that it is heavy and dark yellow at the edges. I put it to one side, remove the zimmer frame and help him onto the toilet. This time I hold almost his entire weight.
“You learn quick” he says as he lands lightly on the toilet. He is naked now except for his pyjama tops and socks. His skin is so pallid. I wonder when he was last out in the sun. Presumably they take them outside. Presumably they do.
He is sitting now on the toilet and I don’t know what to do. I hear the sound of him doing his ablutions.
“Do you want me to leave?”
“Can you wipe yourself?” I am nervous to ask, I don’t want him to say no. I will help him if I can, but it appals me. It isn’t so much that I am repulsed. That part is surmountable. It is more that I don’t want to contribute to his loss of dignity.
“I can manage. Pass me the paper”
He manages, rather inadequately and I start to think that I should have offered.
“What shall I do now, Greg?”
“Help me back on with my clothes”
“It’s a lot to ask.”
“Not really. I imagine you must have changed a few nappies in your time”
“Well then it is pay-back time.”
I am on my knees trying to get his underpants back over his feet. There is a smell of shit. I wonder about pulling the chain but don’t want to spray him from underneath, or embarrass him.
“It’s a lot to ask” he says again
“Its OK Greg, I am honoured.” I mean it. “Maybe one day I’ll be sitting where you are if I am lucky and someone else will be doing this for me.” I am thinking that perhaps this isn’t lucky.
“Not that you’re creating a glowing picture of what it’s like to be in your place”
At last his underpants are over his feet and I chivy them up his legs.
“Do we need a new incontinence pad?”
Together we somehow manage to get the old pad back in place.
Now it is time for his pyjama bottoms. I am back on my knees low down on the floor, stretching under the zimmer trying to get them under his feet. His feet seem very big all of a sudden, and leaden. I struggle to get the pyjama bottoms under them. I want so much to be tender but there doesn’t seem to be a good way to do it. Suddenly I am laughing at the situation. Is that a slight reverberation from him also. Maybe.
“Yes, it can be funny” he says.
Twenty minutes later I have him dressed and sitting on the bed. I am struck by how long everything is taking.
“Do you want me to take your socks off?
“No.” Then “yes, I mean”
As I take off his socks I have a sudden flash back to my childhood and my father tenderly undressing me, ready for a bath.
“Do you want to lie down now?”
I help him into bed. His tiny head propped up on the enormous fluffed up pillows.
“Thanks for your help” he says “this is a dire business”
“Is there anything that gives you joy any more?” I ask awkwardly, trawling for hope.
“No, this is the worst part of my life.”
“You have had many joys in your life though?”
“You have had a full life?”
“Yes I have.”
I am kicking myself for asking all this. It is my agenda, not his.
“I’m going to say goodnight now, and goodbye. I say” Is that too final I wonder? No it might really be the last, and we both know it. Then I add hastily:
“But I’ll come again sooner than last time”
“Good”, he says simply.
“Night night then” It feels clumsy and too sudden. ‘Night night’ makes him a child. I stand up, we look at each other. His brow is furrowed. I sit down again, holding his hand. I put my other hand on his forehead, and stay sitting there for a couple of minutes. His eyes close. His skin is cold and moist. Do I pick up some small surprised relief in him?
“Night night then Greg” that wording again.
He makes no reply and I am back outside in the corridor. I wash my hands in a small kitchen off the corridor. A member of staff is telling off a resident for being on the wrong coloured carpet. At the front door I have to ask for the security code in order to get out. I am surfacing back into my world again now, but it no longer feels the same. As I drive away I can still smell incontinence pad on my hands. It reminds me of a baby’s nappy.
After this visit I went back to see Greg three more times. On the second occasion I took him some vests and two pairs of pyjamas. One pair of the pyjamas was ordinary. The other a one piece superman suit. I had been tickled by the possibility that Greg might just wear it. He said he would. I explained to him that I had bought it for him because he had been a super man in my life. Greg closed his eyes when I said this and I could see the red veins stretched over his eyeballs. He looked on the verge of tears, but none came.
During this period Greg also phoned me a couple of times, once in the middle of the night saying – ‘help me I’m stuck in this care home’.
I never undressed him again. On my third visit he was in and out of consciousness. He shared how frightened he was of dying. “I think that’s why I keep going, it’s the fear”. He explained that it was not so much the dying that frightened him but the fact of being extinct. We spoke also about Rose and how angry he felt with her.
Then last Tuesday I was back again and we talked again of death and Rose. Even though he was clearly very tired and weak there was a new urgency to our interaction cutting across the social norms. “Are we close?” he asked at one point.
“I like to think so Greg, you have been a good friend to me.”
“You have been a good friend to me, but I am no use to anyone now. I have nothing useful to say. You must hate to come and see me.”
“I don’t like seeing you upset, and unhappy, but I do like seeing you”
“I don’t believe you.”
“I wouldn’t lie Greg”
“What’s in it for you then, other than duty?”
“It brings me back to what is important.”
He looked back at me at that point and I knew he understood my reasoning.
After a pause I asked “why are you so angry with Rose?”
“because I resent her for making no effort to be independent”
I laughed gently. “that’s ironic”
“Yes, because you are becoming so dependent yourself!”
“And you don’t have any control over it.”
“So maybe Rose doesn’t have any control either”
“So can you understand her then?” Is this too much heavy handed therapy, I was wondering.
“Yes” said Greg with effort, closing his red hood eye lids.
I went into his bedroom and retrieved a picture of him and Rose when they were younger, looking radiant together. We looked at the picture.
“Why are you showing me this?”
“I want you to do something Greg.”
“Tell her you love her Greg”.
“That’s hard, not like it would be with you”
“You may not have much time, Greg, and you don’t have many choices left, but this is something you can still do, maybe it will help her, maybe it will release you”
“But I’m not sure I feel it”
“You don’t have to feel it! Love isn’t a feeling, it’s an action.” Our eyes meet and I know I’ve reached through. “Tell her you love her, Greg, even if you don’t quite believe it. Let go of your anger”. A forceful authority was suddenly speaking through me with a certainty I could scarcely believe. “This may be one last thing you can do…”
“I’ll do it” he said simply. Then “thank you for what you’re doing with me. I need more of this. I need to talk like this.”
“I’ll come again next week.”
“Yes. And I’ll do my homework. Thanks for this”
“You don’t owe me anything. There was a time you were hugely helpful to me. Now it has come round, it’s just a circle.”
A few minutes later I wheeled him into the communal area and he waved goodbye to me as I walked off down the corridor.
That was the last time I saw him. Six days later he was dead.