Post 163: Observations of Mr U and his ups and downs.
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I’ll take over from here.
I’ll keep an eye on him until he’s fit enough to do this himself.
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The hop-on, hop-off part of this story is finished today.
Seeing him cry on the phone or in the company of others is tough to watch, but he’s struggling to understand and keep up with his progressive decline.
His Darling sent an email request for adult social care assistance yesterday, and not long after 9 a.m. today he had a call to arrange an assessment this morning. So he was off to a good start.
Ms C arrived and made a beeline for the bedrooms. She immediately offered a hospital bed this afternoon, and a high-back chair too if wanted. She checked, measured, advised in a kind and clear fashion even Mr U could follow.
When that was done, Mr & Mrs U sighed a collective sigh of relief. They had been heard and been helped — already. And if anything else came up, “just ring our number and we will help in any way we can.” Fast and friendly people indeed.
The next spin was getting the bedroom ready for the hospital bed. The U’s youngest was called in from work and rushed to his mum and dad’s place (he’s basically the boss, so he judged his request for compassionate leave immediately granted). He did a great job clearing space just in time, as the Hospice Doctor was already here to assess Mr U. As well as the bed delivery.
The doctor really went into detail about everything: general concerns, pain, and pain relief. At one point he and Mr U locked eyes and had a short exchange about chemo. From all the notes he’d read and his own observations, he said: “You are close to physical and mental exhaustion, and my advice is that the last chemo will not help you.”
Mr U had the same opinion so asked the Hospice doctor there and then to tell Dr S (the oncologist) it’s over that afternoon.
That was another big moment.
The bus is gone for good. The last cycle will not happen, and the relief is clear on Mr U’s face.
All that remains is an overhaul of the drug timetable, with gabapentin to be slowly raised up to 1800mg a day, in fact doubled.
With that done the urgent business was completed. As the doctor drove away, the bed and chair arrived. A chatterbox driver sprinkled happiness all around while explaining all the gadgets, guarantees and techy bits; meanwhile Mr U hid himself away in warm isolation in a bedroom due to the doors and windows being opened for the delivery. Then he was off to his next client.
It was then dinner time. Mr U ate the chilli served up for him and his youngest — the biggest plate he’s managed in a while. But, as he hasn’t opened his bowels for four days, he’s now hoping the big Laxido push will finally shift things along. At least now there’s a chair and bed to help him get moving, if you know what I mean.
Happy days.
Except: new steroids prescribed by the hospice doctor for a boost in recovery… the only worry is that his stationary bowels probably won’t be helped. You win some, you lose some.
Later, when the throbbing pain became unbearable, Mr U headed upstairs to the new bed. It took tears and effort, but eventually patient and bed were finally bedfellows. As his youngest left the room he gave his papa’s leg a gentle tap. Nice.
Mrs U went up later and woke him for the morphine potion. After a pee, he came back down in the stair-lift and settled into the new lounge chair for the evening.
If you ask me, he’s got a lot to learn. The lounge chair use is going well, but the bed will take more practice. He must ask for help with it or he’ll damage a whole new set of muscles.
This is also a big challenge for Mrs U, who is helping as much as she can but, in the patient’s eyes, never quite doing anything right. She will, in time. The slide into discomfort and disability has been far too quick. It will take a while for them both to acclimatise.
The pint glass on the side table is now a quarter the size, as the weight makes handling nearly impossible. Mr U’s pain across shoulders, ribs and arms is the same, if not worse. The new meds may take a week or more to kick in — and patience is not his strongest suit.
Still, this is progress. It should be seen as a good day. But to him, it feels like nothing but a slide into frailty and the erosion of his independence.
Changes are hard to cope with. Mr U has a long way to go.
Goodbye from the U household, and from Mr Vicious too. We’re all here, gritting our teeth for the next changes.
Chin up. Worse things ’appen at sea.
