The ‘Hospital’ Bed…Oh No…

Under our HMO we had a visit from a lovely physio who carried out an assessment. He agreed that I need a specialized wheelchair and a hoist to help me and my carers transfer me safely from chair to bed. Up to this point, we were good.

He then said, “You will also need a specialized bed.”

This is not something I particularly enjoy discussing – you can call it denial, you can call it hope, but a hospital bed is not my favourite topic.

So, I was not so happy with this equipment option, nor was my wife, and we instinctively looked at each other. We have renovated the house to create a downstairs bedroom for both of us, with our live-in carer next door, and I want it to stay that way for as long as is humanly possible.

But he explained there is usually an eight-month waiting list for supply, so his advice was to order it now because, if I suddenly needed it – which is a feature of PSP – eight months is a very long time. It has many genuine benefits, not least helping to prevent falls from bed, but I won’t go into those right now. Otherwise, we could end up spending a fortune buying one privately or having to rent one.

So we placed the order with the supplier he recommended.

The supplier called and said, “It will be with you in two weeks.”

WHAT?????

We then got a reprieve when they called back to say it would take a little longer, perhaps another month or so.

I am not ready for it mentally.

We are not ready for it.

I don’t want it.

I know the danger of me rolling in my sleep increases as PSP progresses and that there may well come a time when it is needed. But I don’t want that time to be now. The bedroom for two may one day have to become a room built around a ‘hospital’ bed, notwithstanding all its gadgets and levers, and I don’t even want to think about that.

We will have to store it somewhere. It certainly won’t fit in the ever-growing car park of idle wheelchairs, walkers and canes, so we will find somewhere else.

I am, of course, impressed by the turnaround and the service, but this is a piece of equipment with huge psychological, emotional and relationship consequences.

It represents a stage of PSP that I am simply not ready for. More than almost any other piece of equipment I have had to get used to, it feels symbolic. It is not just another aid; it feels like another line crossed. I want to hold that line for as long as I possibly can. I want to remain a husband sharing a bedroom with his wife, not become a patient in what feels like a hospital room.

I wasn’t even thinking about any of this until this very kind and very well-meaning physio turned up. Now I can’t stop thinking about it. It doesn’t bear thinking about.

So, we will have to find somewhere big enough to store the hospital bed. If you visit one day and notice what looks like a strangely shaped table or sofa hidden under a cover, you’ll probably know what it really is.

My hope is that it stays under that cover for a very long time.