Discharge means you leave the hospital umbrella and move to support locally. In our case it is jointly through three services: Macmillan nurses, district nurses and a private sector care provider paid for by the NHS/Local authority.
The role of the carers is perhaps the easiest to explain. They are commissioned to offer 4 care visits a day – breakfast, lunch, tea and bedtime. Given Annie lives with her family she does not depend on the carers in the same way somebody living on their own would. At first I wasn’t quite sure what the point of the carers was. I wanted to make her breakfast, I wanted to help her get dressed, use the loo. You soon realise this is a very tiring thing to do, especially when you have a three year old who quickly clocks on that there is a new demand on your time. It isn’t unusual for Joe to shout “I need a poo” just as you are counting out pills or fetching Annie a drink. But it is strange to have carers coming in at first. After a few days it became quite normal and I learnt to absent myself- take a shower/read Joe a book/water the plants/go for a walk. Lots of people will earnestly say to you “Hey Steve, accept help” “let them take the strain”. Yes, yes, I agree but it is not quite as simple as that. Let me explain.
Carers work in pairs – usually one man one woman. It will usually be the same two pairs, each calling twice in the day. But given the need for time off etc – it will sometimes be new people. They won’t know of what Annie can and can’t do. They are not a massive fan of the re-turn mo-lift truck thing and a baffled by the leg brace. It took a few days to fall into a rhythm. We know now to get clothes ready the night before, to have tooth brush, bowl for washing, when to bring the hairdryer downstairs, when to leave out some clean sheets.
On the best days, on the days we nail it, Annie gets up with us -we all have breakfast at the table – then the carers come and help her get washed and dressed. We go out for a walk or inspect the vegetable patch. We have lunch together – and then the careers come to help her get Annie back to bed for a nap. At the moment Annie is best when she can have a long afternoon sleep free from visitations or calls from various health professionals. This also means we can have tea together and Annie’s mum can spend a couple of hours with Annie one-to-one while I put Joe to bed and I can watch mindless TV with Annie as normal (Friday Night Dinner and Fawlty Towers both regulars at the moment). This invariably means she sleeps through her tea time care visit and it means the carers can catch up with their other clients. As you’d expect they are fully masked up – so we have never seen their faces. They are great with Joseph – putting him at ease and asking him if it is birthday again today. He calls them mummy’s nurses and seems to understand why they are here and doesn’t seem phased by the masks.
When it doesn’t work so well is if they arrive midway through breakfast or lunch, and as a family group we naturally abandon our conversations in the same way you do when the taxi arrives to take you to the airport. It is difficult to remain normal -Joe picks up on this flapping and finds the loudest toy to hand and starts to scuttle about under everybody’s feet. Annie doggedly chews her muesli and calmly sips her tea, seemingly unfazed as two masked carers wait on in the hall. Thankfully this doesn’t happen too often.
And then we have the Macmillan service. Their capacity to support us is bottomless. (I’ll no doubt write more about them in future blogs so will keep it brief here). Annie has been meeting with the same Macmillan nurse since last summer. They both have one son called Joseph and Annie is completely at ease with her, natural conversation over a pot of earl grey. The situation is different now. Annie’s nurse has to wear PPE and cups of tea are no longer offered or expected. But what Annie’s nurse can do is fix things, sort things and offer assurance to us all. A quick text to Annie’s nurse and the next day Annie’s GP, a Macmillan physio or consultant knocks at the door. It is an incredible service that combines a joined-up-ness you rarely see in hospitals and yet has the headspace to be compassionate. The Macmillan service works really well with the district nurses. They are incredibly considerate our space – they will always check if it is okay to visit and will work around our plans.
I feel incredibly lucky that we have this face to face service during this pandemic. As with the hospital staff and carers , they are great with Joseph. He’ll often become Doctor Joseph when they call – making brief and surprise appearances during their visit. It always helps to lighten the mood and try and make all of this a little bit more human.
In the next blog I will focus on an unexpected return to hospital.
No comments:
Post a Comment