1532 days in Care.

My heart is heavy today. Bob has been moved to a unit with more
nursing care and apparently he is deemed ‘ palliative’ and a Doctor and nurse has seen him and he is ‘ on the pathway’. I must find out what that actually means.

I walk into your room. Good you are sitting in your chair. They have got you up. You like to be sat up in your chair.

You are resting, half asleep, eyes half open, unseeing eyes and blank. Your body is leaning awkwardly, lurching towards the corner of the plastic arm chair. You have a neck rest but it is not enough to keep you upright. Your legs are wasted, like two sticks.

I place the red Paris bag down on the sitting chair opposite you in case you wake and see it. I think you might recognise the colour and the pictures and associate it with the appetising food I bring you within.

I try to carry on with the routine.
‘Hello darling, it’s Chris I’ve come to see you’
Nothing.
‘It’s Chris, I love you and I’ve brought you something lovely to eat’
Nothing no response, no movement.

Into the room comes another resident. She’s always tidying up. She folds clothes and puts them in drawers.
‘ Hello Lorraine, it’s nice to see you’ I say.
She smiles at me. She picks up Bob’s cushion with a photo of me and you on. It was the day we had a party for our son who had passed his medicine exams. We are positively beaming out of that cushion.

I show Lorraine the picture. I hold it with her whilst she clenches it tight just before it goes with her out of Bob’s room.
‘That’s me’ I say.
She scrutinises the photograph on the cushion. She looks up at me almost checking the faces match.
‘That’s lovely’ she says. ‘ I like that one’ she adds pointing at my smile on the cushion.
‘Thank you’ I say as she walks back into the hallway. At least I have rescued the cushion. I put it at the side of Bob’s head to help him sit up a little better.

I move Bob’s chair ( it’s on wheels) and put the wooden upright chair next to his for me to sit on. Today the TV is on. I change the channel to Tipping Point, something we watch every time I visit. Bob likes to watch the coins drop down.

The change of channel seems to rouse something in Bob.
An unintelligible shout. I hope he will wake so I can get some food down him. I whisper in his ear.
‘I’ve been to the chip shop Bob and guess what I’ve bought two fish cakes, your favourite’
He is semi conscious now.
I have a fresh tea towel that I put it around Bob in case I drop any food. It’ll be too difficult to place on a spoon so I’ll break up into little bits to pop in his mouth.
I break the fish cake into bite sized chunks.
‘Here you are Bob, try this’.

It is always slow at the beginning. It’s almost as though he has forgotten how to eat. He opens his mouth and I have to get the timing right before it closes. But it gets easier once he understands what to do. I’m patient. I never get cross. I just think he didn’t ask for this to
happen. It’s the least I can do.

He likes the food today. I can tell because he chews, swallows and opens his mouth again. He hardly talks now but after I’ve fed him the food he likes I think he comes back to me a little.

He often becomes a little more animated. Odd words are said like’ Lovely’.
He enjoys the fish cakes and eats both quite easily. I get the beaker and tell him I’ve got a little bottle of French beer for him. I pour it into the beaker and secure the top. He drinks.

I chatter about this and that. Just like I would have done in normal circumstances. I’m easy in his company. I know he will hear me. He recognises my intonation and the way I say things.

Today my lovely friend has sent Bob a fresh cream scone, carefully cut up into bite sized pieces. I hope he eats it and he does. Every crumb.
‘ Chris knows what you like to eat, don’t I?’ I exclaim.
‘ Crisp,’ he responds.
‘ Yes’ it’s me,’ I say. ‘ Have you got a kiss for me?’
He puts his lips together and I lean into his chair to kiss him and tell him how loved he is.

The love I feel for Bob is not diminished. I feel desperately sorry that he has this cruel disease. For his valiant fight and his determination to try to get back to me. To make me understand. I try to read him. I know him so well I often realise what he’s trying to say or what he wants. I take his hand and we sit together. I tell him the news as simply as I can.

He jumps a lot. It’s become more obvious. Like an electric volt. Arms shoot upwards. I’m not sure why. Is it the medication or his brain misfiring? We don’t know. Anxiety perhaps.
‘It’s ok, I’m here now.’ I try to soothe him.

He seems to be always clearing his throat too. I think it’s because he spends so much time laying down. When I’m not there the routine is he stays in bed. It’s easier. Not for Bob. I wonder if he wants a small banana. He can bite a bit off at a time if I hold it up.
He eats it all.

Now it’s The Chase on TV. Bob likes that. He likes the green lights when the question is
answered correctly. He sometimes reads the subtitles but nowadays it’s the odd word.

It’s 1532 days in care. Bob is 72 now.

I have visited every week in this home for three times a week from March 2021, as soon as I could get to him after Covid restrictions. If I couldn’t get to Bob I had dear friends that took over from me. They know I wouldn’t have had a break if they didn’t go to see him.

And the year before, 2020 I shouted from the street or put my hand to his on the window. Him bewildered and me heart broken. Yes it’s been a roller coaster of emotions and one hell of a ride that is not yet over.

I do my best. But then so does Bob. It’s the least I can do.
Sadly Bob has asked me ‘ Why? Why?’
I do not know exactly what he is referring to. Is it ‘ Why have I got this disease? Why am I here?’

I am sad he has to suffer this disease. Even now he is trying to make some sense of it.

My heart is heavy today.