My world, like mum’s, has shrunk

My world, like mum’s, has shrunk. America seems a hazy vision. Even the park and the high street feel like day trips. The corridor between the dining room and the back sitting room (where my mum is) seems a mile long. Her room; hospital bed on one side, an audience of chairs on the other; fills my mind.

The other furniture in the room is functional to help manage mum. Her bed table with her glasses, phone, mouth moistener and assorted drinks acrross the day, three floor lamps (two constantly lit), two side tables, one crammed, like the window sill, with flowers. Then the carers wheely trolley of supplies.

Lastly the chest of narrow drawers that sits next to the door to the corridor. On its top is a plastic paper tray. In it mum’s yellow folder with her DNR and end of life plan, the schedule for when the carers came, the discharge letter and carboard sheet that detail mum’s medications, the neat organised typed check list my sister made to keep on top of our days,the scruffy scrawled medication record I made to keep track of what we have give her. Inside the top drawer full of cards she has recieved, each one tear jerking in its affection and praise. The next drawer is the medications we administer, heart, hormones, mouth and most importantly pain. The drawer underneath got stuck in the move and stays empty. The forth drawer has spare supplies for the carers who come three times a day: pads, wipes, gloves. The fifth drawer has towels. The sixth clean sheets.

Then there is the fire we havent lit and the TV we have only watched once.

This is it.

Mums world is even smaller. She will never sit in the high upright chair covered in sheep skin, never use the wheelchair and ramp we carefully organised. The adjustable air matress is now her home. She will only move with it as we release the breaks and move it to the centre of the room to change her, or as we raise and lower it in various combinatiens of raised back and feet. But full flat and full upright are too painful for the metastases in her spine.

My world and my family’s have shrunk around her. Sitting in the chair talking to her holding her hand, bringing her food and drink from the next door kitchen (now pretty much only drink) moistening her mouth, bringing her pills, cleaning her, changing the sheets.

The cat has also retreated here spending most if her day on mums bed. Last evening  the cat lay stretched out accross mum’s tummy head towards her arm which she gently and carefully licked.

The room is not without interest. On two walls are bookshelevs filled with cook books, photo albums and diaries. The rest of the walls are a mosaic of art – like a gallery my friend says- the walls so full, even the back of the door has two paintings on it. One of a puffin flying at sea next to a fishing boat by my daughter. The large cream Magnolia Flower against dark glossy green leaves painted by me.

Then there is the huge window with its view of the garden my mum transformed. Roses, ornamental and fruit trees, bamboo, shrubs fill it’s vista. The first couple of days she spent a lot of time gazing it out there. Now I fear her eyesight is going. She squints and swaps glasses trying to examine the photos I show her.

Her hearing however is sharp as ever.Yesterday she startled us repeatedly when suddenly rousing from an apparently deep sleep to react to something we said. She will tell us what she thinks, or simply fix me with a beady eye to show she knows I’m ‘up to mischeif’ she talks about herself being naughty. There is much laughter as well silent tears in this room. As other layers have peeled away, her sense of fun and value of other people have had full reign. Although for the last couple of days she has mostly slept when awake she constantly thanks us and says things to make us laugh.

What also remains is her strong drive to change the world beyond this room, When you listen carefully (its often difficult to make out words now) bed she still talks about the future: sometimes practically – the need to install a new sign from the town centre to the park, sometimes philosophically – telling my son (in response to a piece of music which he composed for her and played on the piano down the hall making her leek one silent tear) that music was the most enduring of the arts. She talks about changing education, core values, community. Things she has worked so hard and so remarkably successfully for all her life. She has always had the capacity to see a better version  of the world and the contagious conviction to make that vision a reality,  from inclusive classrooms to drought friendly roundabouts.

Right now the physical space she occupies is so small only 6  by 4 foot. But, outside this room, her concrete impact and enduring influence stretch far and wide..



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