Home is harder than we thought.
We dreamt of getting mum home.
With remarkable efficiency the hospital had her dressed packed heading on the ambulance home with my dad by 1pm, At home a bevy of professionals, carers, district nurse, GP arrive within the hour: filling up our back sitting room with equipment and filling out paper work with easy charm.
The district nurse is an old friend, having been with mum through the endless (and now perfectly understandable) painful and unsuccessful recovery from the brutal operation Mum had to remove the cancer in July. Of course now we know the cancer never went.
The bright faced carers are warm and competant. Returning later they have mum washed, changed for bed and settled in half an hour. Most wonderfully with no pain.
The young GP standing in for my parents amazingly dedicated and attentive long time GP ( who is on holiday) is quiet and calm. He completes mum’s DNR without fuss than calls for silence as he makes sure everyone understands her wishes.
They leave. I place the cat on mums lap who lies there with a great rumbling purr as mum strokes her while happily looking out the window at the lush leaves and flowers in the garden still damp from the earlier rain. The room is a bower of flowers and as we sit yet another bunch arrives in the arms of one of mum’s creative local friends. They sit and chat easily.
It seems perfect. The vision we had for having mum home. But things begin to unravel. I lose track of times for all mums different medications despite my sisters carefully typed list. We cant find the night bags for her stoma. The room has been rearranged to accommodate the carers requirements and the District Nurse’s large tool box, sharps bin and medication bag things. Now we cant find anything.
I head to the kitchen to cook the arrabiatta pasta that I have been promising mum for days. But the large tube pasta I choose for ease of eating never seems to cook. Standing over the stove I struggle to remember how I normally make the sauce or to find the spices in the cupboard. All can focus on is that she wants it spicy so I add one form of chilli after another. Eventually I think the pasta tubes must be done. But as I drain them I can see it has stuck to the bottom and have to scrape it out mashing the pasta as I do. Anxiously I combine the sauce with the pasta. It looks a mess but I am hopeful it tastes alright. I get my sister to taste it, she reacts instantly as she puts a spoonful in her mouth. ‘A little hotter than I would have it (she swallows) but great not to have to cook’. Nervous I ask my dad. He tastes it and pronounces it burnt. I stare in despair. The carers are due in 20 minutes and this mashed toxically spiced burnt mess is all I have to give mum. While dad tries to find stuff in the freezer. I decide to take a risk and feed it to mum. Topped with sour cream and parmesan it doesnt look too bad. Mum reaches for it eagerly and takes a forkful. ‘Umm delicious. Lovely and spicy.’
I sigh with relief (in the end both my sister and my dad have second helpings!).
We toast mums return with prosecco.
Our next challenge is to get ‘strictly come dancing‘ to watch on the TV in the corner of the room. My mum has been looking forward to this. But when we check it hasnt recorded, despite repeated attempts, the iplayer wont load on the smart TV. We put in the amazon firestick and are finally able to watch a heavily pixelated version that looks on occasion like the contestants have had their faces blurred to protect their anonymity. Its late by then. 8.40 and I realise the 8pm meds are overdue. Then my mum cries out that she needs the bed pan and shouts at us to remove the cat who has been lying peacefully with her most of the time.
I wont go into the next half hour in detail. Suffice it to say that a lack of skills, preparation, correct equipment and basic knowledge for even how to position the electric bed had my mum crying out in agony and tearfully apologising. We reassure and persevere clumsily stroking kissing and patting ber as we manoeuvre her inexpertly around the bed. Finally we have her clean comfortable and out of pain.
My sister and I retreat to the kitchen we hug. ‘Im not sure we can do this’ she says. I have been wondering the same. I just hadn’t realised how imobile and delicate mum had become. Pain was the one thing she wanted to avoid and we had inflicted it on her. But then I think that ‘this is where she wanted to be.’ She thought we might not cope but we promised her we would. I square my shoulders we cant give up now. I check on mum still painfree and now very sleepy.
Nights have been really bad in hospital. So I tell mum she can call me at anytime and set an alarm for 3 am (an hour before the episodes that she has been having) I head to bed to try and get some sleep before then. My sister has set up a video monitor so I can see and hear my mum downstairs. The sound if her loud open mouthed breathing and the wurr of the electric air bed are strangely reassuring and I doze in and out of conciousness. When the alarm goes at 3pm she is still fast asleep. I head back to bed but for the next part of the night her breathing seems to go so quiet on occasions that I have to get up and go downstairs to check she is still with us.
In the morning, heading for coffee, I find my dad at her beside and mum still fast asleep. She had a good night I said. She slept right through. We both look at her mouth open and deadly still. Did you give her too much painkiller Dad asks. I say no of course not – I am 99% sure- While my manual handling is rusty other parts of ny nurse training have reasserted themselves. But I still check the hospital instructions 10 times.
Coming back in mums prone form is worrying me too. So, though I partly feel she should be left to sleep, I come up to the bed touch her arm and say ‘mum’. Her eyes open and she smiles. She is still very tired but tskes a drink of water and says it would be ‘lovely’ for dad to read to her as he has done so many mornings in their nearly 60 years of marriage. Returning to bed with my coffee the sound of his mellow and expressive voice comes through the monitor. Mum lies peacefully listening. Perhaps we can do this after all.