Learning To Love You More




Assignment #31
Spend time with a dying person.

Chris Miller
London, UK



Absently Present
I went to see Mum in her care home. She's been there now for almost two and a half years, one of the most extreme cases of altzheimers at the home. I went through to the main lounge where she was sitting in her armchair, legs propped up on a rest, to keep her from rolling forward in her chair and risk falling. She has already fallen on three occasions since entering the home and has poor control over her muscles and limited movement. When she gets agitated because of the need to go to the toilet, she rocks in her chair, straining to keep control, but unable to take herself to the toilet, nor to ask others to help.
Today, she was not asleep when I arrived. She had her eyes open, hunched forward slightly and seemed to be enjoying the music that was playing. Instead of the blankness I sometimes find on her face, she smiled when I walked in and made eye contact. It was a good day for her, it seemed, and so for me. It makes me happy to see her looking comfortable and looked after and makes me anxious when she veers off that safe path. On bad days, she shows little expression, she struggles to stay awake and I feel like a stranger. On a day like this, I feel like my visit has an impact and makes a difference to her and to me.
I greet the carers, say hello to one of the other residents, who is staring at me, ask after how Mum has been doing. I then get a drink to take through to Mum's room for her. The carers, Maria and Keely, get the hoist to raise Mum from her comfy chair into the wheelchair so I can take her to her room and spend some quality time with her. And it is quality time too. It has taken a long time to get to this stage of appreciating the moments I spend with Mum rather than hating the condition she is in.
She has had altzheimers for about ten years. Until Dad died last year, he watched over her like an angel. He cared for her at home for probably 8 years, till her condition worsened and she required professional care. Then he visited her every day at the home and kept careful watch over how she was being looked after. No one expected Dad to go first, whereas we have been anxiously waiting for Mum's condition to worsen to a point where she leaves us. One Doctor told me how unusual it was for someone to survive as long as Mum had done with her condition. That is perhaps Dad's finest legacy and testimony to his unceasing love for Mum. We half expected Mum to fail quickly after Dad died. But women seem to be so much more emotionally resilient than most men. Though she can say nothing but a few mumbling words, cannot move her body, except laboured movements of her hands and arms, retains nothing new in her memory, and most days she doesn't recognise anyone, she shed tears after my father died, when one of the carers mentioned Dad's name in her presence. Maybe, there's more left of my Mum than I sometimes realise.
I wheel Mum through to her room, place her wheelchair more or less opposite where I sit in readiness to have a chat with her. I get the necessaries ready. This has become second nature over time. I get tissues to help with spills and Mum's perpetually itchy nose. I flavour the water I have brought through with cordial stored in Mum's wardrobe. I ask Mum what she fancies – orange, black currant, pineapple. I hope for a response, but never get one, so I speak for her. ‘Orange is quite nice, how about that?'. She drinks eagerly. Even if she eats uncertainly, she always drinks well. After half a glass, I get a treat. Dad always gave Mum a shortbread which she enjoyed, even at the risk of spoiling her lunch which arrived in an hour's time. I usually follow that example, but she also enjoys a piece of chocolate, which is also easy for her to swallow. As she has dentures, which sometimes the carers struggle to get in, she needs mushy food or food that melts easily. The chocolate even extracts a little ‘mmmm' as she enjoys it. I get such pleasure out of hearing her enjoy something. Her liquidised lunch never elicits that little sound of delight.
I tell Mum what has been happening, how my other brothers are coming to see her, what the traffic was like, what I've been doing. I have no idea if any of this gets through, but since the time Mum cried after Dad's death, I've always suspected that a kernel of real Mum remains locked up inside, maybe unable to get to the outside world, but perhaps some of the outside world can get through to that special part. Much of what I say probably sounds banal and even ridiculous, but in the comfort of Mum's room, it is private space for Mum and me.
Today has been a good visit. There has been enough interaction for me to feel like I made a little but important connection. I have put cream on her hands and arms, and some Oil of Ulay on her face. I remember, as a child, how her daily ritual included hand and face crŹme. It's also another means of communicating with her. When other modes of communication are limited, things like touch and smell become particularly powerful and immediate. She loves having the cream gently applied to her face. In the same way that she could cup my face in her hands when I was little, and give me a loving smile, so I finish by doing the same to her. She closes her eyes while I apply the cream and, on a good day, she will smile when I cup her face in my hands. Today was such a day. She smiled with eyes closed, maybe enjoying the faint memory of past times and I laugh quietly and satisfied.
Final treat is to comb her hair. She still has good hair for all her 87 years of living. Silvery white, flecked with grey and thinning, but resiliently fulsome given her condition. It gentles waves across her scalp. Funny how Dad used to call her, and me, curly, when neither of us really are. So I borrow the nickname and say ‘ok curly, time for me to make a move as you've got lunch in a short while. Are you feeling hungry?' Mum doesn't react. Neither surprise, nor disappointment, nor sadness. I release the brakes on the wheelchair, and take her along the corridor back into the communal lounge where she rejoins the other residents as they are moved towards the tables for lunch.
I say my farewells to anyone who will hear me, put Mum by the table, make sure her presence is properly acknowledged by the carers, then, before I finally leave. I kiss her forehead and tell her I'll see her very soon.
I leave half looking back to make sure she is ok till she has left my sight. Then along the corridor, down the stairs, past the receptionist with a smile and I sign out of the care home. As I go to my car, I wonder about the cruelty of it all. It is not living, just existing. And I think to myself that if that fate should ever befall me, I hope that I have the bravery and sense of timing to chose my own way off this planet, before the will to do so finally escapes me.
Written with love for Mum and Dad, Irene and Les Miller by Chris