The Hospital Bed Question: When Is It Time?

A couple of weeks ago, I wrote about being told I needed a hospital bed.

I was not ready.

Fortunately, I thought I had plenty of time. The physiotherapist explained that the waiting list was around eight months, so although I completed the paperwork, I filed the whole thing away in my mind as a problem for sometime next year.

Then the phone rang.

A bed had unexpectedly become available and could be delivered within two weeks.

Just like that, a decision I thought I would be making months from now became a decision for today.

On the recommendation of a friend with considerable expertise in this area, I also ordered a pressure-relieving mattress. Whether I use the hospital bed immediately or not, that felt like a sensible investment.

The bed itself is now waiting for me. The only thing preventing its arrival is me agreeing to a delivery date. I have even paid my contribution, which is not insignificant.

The problem is that this is not like buying a bed from IKEA that can sit in a box until you need it. Our current beds have to be removed, the room reorganised, the new bed assembled, tested and signed off. A hoist has to be installed to transfer me safely between the bed and my wheelchair. Once it arrives, it becomes part of our home.

There is no halfway house.

That is why I have already postponed the delivery.

The strange thing is that I can already see the benefits. Only the other day I almost rolled off the physiotherapist’s treatment table, and the side rails alone would make me feel much safer. I also know that the bed would make life easier for my wife and my carers. And yet I still believe that, if I am careful, I can manage without it for a little while longer.

The truth is that I have absolutely no idea where I am in this disease, and that may be the hardest part of all.

People often talk about the stages of Progressive Supranuclear Palsy (PSP), but I genuinely do not know what stage I am at. In the space of just four days, my nerve pain returned and I had to start taking opioids again. The following day, my wife quite rightly called an ambulance after I experienced what appeared to be a “power down” episode that looked alarmingly like a stroke. Thankfully, I recovered, signed a waiver and chose not to go to hospital. Looking back, that seems to have been the right decision because there have been no lasting after-effects.

Then, over the following two days, I enjoyed some of my best days for quite some time.

How do you plan for a disease that can change that dramatically in less than a week? Physically, I seem to lurch from one extreme to another, while mentally I still feel very much like myself.

That uncertainty is what makes this decision so difficult.

I do not believe I need a hospital bed today, although I would probably benefit from some of its features. What I am really struggling with is not the bed itself.

It is what the bed represents.

It is a hospital bed.

Accepting it feels like acknowledging another step in my journey with PSP, and I am not sure either my wife or I are psychologically ready to take that step.

Then again, perhaps I have been looking at it the wrong way.

The hospital bed is not my enemy.

PSP is.

If the bed helps keep me safe, preserves a little more independence and makes life easier for those who care for me, then perhaps it is not a symbol of decline at all. Perhaps it is simply another tool that will help me keep living my life, whatever tomorrow brings.

Perhaps the practical answer is simply to accept the bed, clear the bedroom while it is installed and signed off, and then arrange for it to be professionally moved elsewhere in the house until the day I truly need it. That would solve one problem, although it would create another. Finding somewhere to store a fully assembled hospital bed is no small logistical challenge.

And yet, despite believing every word I have just written, I am still not ready.

Which makes me wonder whether I have been asking the wrong question all along.

The question is not, “When is it time for a hospital bed?”

The real question is, “When is it time to accept that I need one?”

Today, I still do not know the answer.

Perhaps I am wrong.

Perhaps I am right.

Only time will tell.