The Hospice stay is approaching. I know Roch is apprehensive and frankly, I’m not sure how I will feel when he’s there, but overall I think it’s come at the right time. The wonderful Donna, our Hospice nurse, came to visit on Tuesday and we had a very productive and reassuring chat. It’s a ‘respite’ stay, which means that the stay provides a break from the difficulties of the situation for Roch, for me, for all of us. For Roch, it’s an opportunity to get to know the staff at the Hospice, and for the staff to get to know him. It comes at a time when he is well and he can communicate his needs, his likes/dislikes. Donna consulted with us and went away with a care plan, so the staff there will know how much assistance he needs with everyday tasks, what equipment he may require, whatever he might need to make his stay a pleasant one.
He will have a room to himself, ensuite, with a door out to their garden or courtyard, or a room with a decking area right outside. He can order a cooked breakfast (a full English!) every morning, made freshly just for him. The thought of that full English cooked breakfast has made a difference!
There will be a small fridge in his room - vital information volunteered by Donna before I even had a chance to ask.
She is anxious to reassure him, “It’s not a prison,” she says. “Your friends are welcome to come and visit you, bring you out for lunch, round the corner to the local pub in the evening.”
She has alerted the Chaplain - she anticipates lively discussion and debate between them. There is a small Chapel or at least, a room for private worship and reflection. I notice that she doesn’t mention this. She knows him well enough to know that this will not be a selling point for him.
We discuss what else he may need to make his stay more comfortable. We have no way of getting the electric wheelchair there ourselves, so Donna quietly ponders this. Later she calls to say that the wheelchair will be collected on the day of admission, before we leave the house. It will be there for him when we arrive. So, he will not be entirely dependent.
‘One example of respite care is the nurse-led approach. The respite nurse would carry out a home visit prior to the patient’s admission to discuss their care needs during admission, write a care plan that includes the patient’s routine and answer any questions. The same nurse would liaise with in-patient staff prior to admission about any specific requirements, e.g. nutritional needs, mattresses, equipment etc. This respite nurse would then admit the patient to the hospice, review them during the admission and assist in organizing their discharge.’
Oxford handbook of PALLIATIVE CARE
So - preparations have begun.
Here’s a peek at some of the essentials on our list:
Clothes (obviously) ie underwear, socks, tee shirts, jeans, tracksuit bottoms, braces, belt, shorts and tee shirts for bed
The trusty rollator
The sock putter-on-er (essential piece of kit)
Moist toilet roll (no bio bidet I’m afraid)
His towelling robe
Two small towels (large towels are too heavy now)
Nespresso machine (he will no doubt be offering espresso to staff, patients and visitors alike)
Nespresso pods (a goodly supply)
CIGARS and lighter(s)
Beer (preferably Okocim)
I-phone and charger
PC & Charger
Medication: Riluzole, quinine, baclofen, lorazapam, Vit E suspension, Vit C, Loperamide
Blanket/bedspread from home
Toilet bag: toothpaste, toothbrush, shower gel, shampoo, mouthwash, dental sticks, deodorant, facecloth.
‘It is widely accepted that keeping patients at home weighs heavily on those family members who will provide care and support. Caring for someone on a daily basis can be very tiring, both physically and emotionally, leading some carers to feel unable to manage, which may result in unplanned admissions to hospital. One strategy to help carers in this situation is for hospices to offer planned respite care, either as an in-patient or on a day basis within a day hospice, to enable carers to have a rest from caring. This may be sufficient to enable them to ‘recharge their batteries’ and continue the care they provide, thus allowing their family member to stay at home.’
Oxford handbook of PALLIATIVE CARE
It gives me a chance to rest, time to myself. Donna is firm with me “You’re not planning to visit every day are you?” She asks me. “The ward staff would actively discourage that.”
But no, I’m not planning to visit every day. I need some headspace, I need to sleep. If I feel like it, I will write. I have ordered a book from Amazon and hope to have time to read. I plan a DVD afternoon - just me, the sofa, the TV and some chocolate. I have taken the week off work. I begin to crave time to myself.
Tom has exams that week and will be on study leave - but that’s different, Tom’s my boy.
We have a bit of a running joke going, which Donna is party to - the ‘All about Roch joke’.
‘It’s not all about you, you know, Roch,” she says, laughing.
“Oh yes,” we say together, in mock protest, “Yes, it is.”
But we both know that this is about me, too.