On the Waiting List

Today was a day of emails and visits and phone calls.
I started my morning with an email to the hospital-based MacMillan nurse, setting out the events of the weekend and letting him know that we are not safe here on our own.  Because that is what it boils down to now.
And as I expected / hoped / perhaps even prayed, the MacMillan nurse did not let me down.  He rang me to confirm receipt of my email and then sent up the distress flare on my behalf, contacting the district nurse, the GP and the community MacMillan nurse to spur them all to action.
A pair of district nurses came at 11am, took FL’s blood in readiness for tomorrow’s hospital appointment, and asked for the story of what had happened on Saturday night.  They had a look around, to see how far FL has to walk to get to bed and bathroom and wondered about supplying a commode for the bedroom…?  But when they started to talk about installing a hospital bed I began to panic.  They seemed to be saying that we could continue to manage on our own, that gradually he would spend more time in bed and that would make it easier in many ways….?
I explained that there is only me and I can’t do it all on my own.  I can’t cope on my own.    And maybe that was the admission of defeat they were waiting for.
Was it some sort of a test?  I don’t know.  But by the time they left, they said they would be recommending to the GP that a place be found for FL in a hospice or the acute ward of the hospital.
The next incoming phone call was the GP, who had heard from the district nurses that FL was “not so well”… how many painkillers was he taking?
The GP was still on the phone when the MacMillan nurse arrived at the door and had to be let in. The GP told me to talk to her, and to ask her to contact him later in the afternoon, and hung up.
The MacMillan nurse talked to us for a long time.  She asked what we thought she could do for us:  I explained that I hoped she would be able to coordinate some support, because we were getting nowhere.
She said that was not her role:  that this was what the GP was supposed to do.  The polite version of what I said in reply was that he had not demonstrated such skills thus far.  I told her that he had not returned phone calls I had made to the surgery, that he had only met FL on one occasion, so had no way of assessing how he is now compared to how he had been until maybe 3 weeks ago, and that I had not been impressed by the said GP’s professionalism on the night of his only visit (the detail of which is not for blogging, but which I shared with her).
Her eyebrows shot up and she declined to comment but agreed that it did not sound as if the GP had been of much assistance in progressing FL’s care.
She was concerned that nobody had asked to test his urine despite me reporting to the district nurses that he had not been able to pee for 24 hours and had then produced scarily dark liquid.  At the very least she thought he might have a UTI, but equally likely it could be evidence of his kidneys shutting down.  She was appeased by his report of “ordinary” pee this morning… but nevertheless…
The  ridiculous irony of all this was that FL was completely engaged with the conversation.  Positively perky.  And this made it very difficult to communicate that just two days ago he was incoherent and confused and unable to stand up.  That he had been so sleepy that he had let pills dissolve in his mouth, unable to swallow.  I tried to explain that he spends 22 out of every 24 hours asleep and that I never know how he is going to be when he wakes up – perfectly fine, or totally out of touch with the world.
She frowned, as if she didn’t believe me.  And I can understand why – he was presenting as a perfectly normal, if somewhat frail elderly man, who had maybe had a bug over the weekend.  She said she did not see why the hospice had been suggested:  it is for assessment of people with symptoms that suggest they are near the end of their lives, which was clearly not the case or the GP would be aware…?
 I pointed out that the GP had only met FL once, so how could he possibly make any sort of assessment of FL’s health?  And that the Consultant at the hospital, who has known FL for 8 years, was the one who proposed the hospice and had made a referral last Tuesday because she recognised the change in him and his rapid decline.  That this was not my idea!
She asked why we did not have nurses visiting, a zimmer, a wheelchair, a hospital bed…?!
And at that point all of my frustration poured out as I explained that I had tried to get help but that I didn’t seem to be able to make anyone understand… and how was I supposed to keep him warm in a house that is cold and wet with inefficient heating, or wash him in a wind-tunnel of a bathroom with intermittent hot water… that the only time he gets a wash is when he soils himself in the middle of the night and I have to get him into the shower despite his protests against cold and hot and wet… and what are we going to do when the snow comes and we get cut off for days at a time, as we always do…?!
And somewhere in the middle of the outpouring, she understood my fears.
We are not safe.
I am not coping.
The house is not suitable for an invalid.
And this situation is absolutely not sustainable through an Aberdeenshire winter.
She put down her pen.  And finally it seemed that my words had made an impact.
It would appear that FL’s symptoms are not in themselves enough to get a bed in the hospice, but his crumbling home and his crumbling wife most certainly are.
“The whole picture” was how she put it.
It is suggested that we make our own way to the hospital tomorrow as planned, and that his prospective blood transfusion may actually take place in the hospice.  We should take his overnight bag with us when we go.
And FL agrees that this is the only possible course of action.

The district nurse rang a short time ago, to tell me that a nurse is coming to help put FL to bed tonight “sometime between 8 and 10”.  Better late than never.

The hospital-based MacMillan nurse rang to find out how the day had gone and what had been agreed, to wish us a good night and that he would see us tomorrow.

And so it is that FL is now on the (short) waiting list for a place in the hospice.

I feel like a traitor.