Lost in a system you should know back to front

A long drive home with so many things buzzing in my head. I phone the next day to see how you are. No decision has been made about whether or not you can go home. You are still having some periods of confusion. They are still waiting for the assessments to be done.

I talk about how independent you were just 48 hours ago. They all marvel that you are like that, ‘at your age’ that you aren’t on any medication or have any significant health issues.  That you don’t need support with housework, shopping etc. But they don’t seem to see that a window of opportunity is closing fast. We are working in different time zones, I feel that I’m in a parallel universe and I can seem to find a way to speed things up.

I’ve lost count of the number of people I’ve spoken to and whilst I now have the password to get information I don’t have the key. I can’t quite work out who is the key person. This is stupid, I should know how this works. It’s my world, and yet….. Am I trying to be too understanding, maybe I need to be more assertive, pushy. Because I know the system am I too understanding of how it is? And yet…. We all know what it’s like dealing with another health professional. All of this is going round in my head as I am talking. I’m treading on eggshells and maybe I need to do a bit more trampling.

I know the clock is ticking as you sit in the chair by your bed in your nightclothes. Your independence hanging by a thread that is fraying day by day. There is only one thing you keep asking, ‘when can I go home’. Exactly the right question.

I put the phone down and sit with my frustration for a while. I remember you sitting there yesterday jumping at every loud noise on the ward looking lost. Your life is filled with quiet. You like it that way, no radio, no music, very little television. There’s no clock to orientate you to time, no calendar to help you keep track of days. The ladies on either side of you both have quite advanced dementia so no one to talk to. You’re so far away from home that none of your neighbours are going to be able to visit you to keep you connected. How is this going to help with your confusion?

I know how particular you are about your food because all kinds of things upset your stomach. I know your diet is not the most healthy but it is your diet it’s kept you going all these years. I remember the lasagne and chips that were being served to you when I left you and wonder who decided that was what you would like? There is no way you would have eaten that given the choice. I remember how far away you are from the bathroom. At home in your tiny little bungalow it’s about 6 or 7 steps away.  As you always tell me, ‘when I need to go I need to go’. You worry if you think you won’t make it in time.

I think of the messages about how much muscle strength is lost when older people are immobile. Of the little Lego man and woman being used to encourage people to, if possible, get dressed when they are in hospital. Will someone start to encourage you to get dressed? What is being done to maintain your independence at this very moment? It’s not enough to marvel at something that has the potential to seep away like grains of sand being held in a hand.

The assessment

I call the next day to see how things are progressing and am told you’ve been assessed at last. Hurrah! But now there is disagreement within the team about whether or not you are OK to go home with an appropriate care package. You’re mobile, pretty independent but you are, at times, confused. When you were taken down to the kitchen you needed prompting on how to make a hot drink. There are times when you don’t know where you are and one morning when the nurses came on shift your named nurse found sitting by the nurses’ station waiting for the bus home. But then at other times you’re fine.

There is now talk that you may need to be transferred to a POP bed. POP, another acronym that people assume I should know.  Of course! A plaster of paris bed, a temporary bed for people who need support whilst the cast is on. So, things are in limbo while the team make some decisions.

In anticipation that you might, just might, go home I try to pre-empt any delays by sorting out a home care package. You’re going to have to pay and I know you won’t like it but there you go there is a price to pay for going home. The first company I ring feels they might be able to support you but it would be at least 2-3 weeks before they would be able to come to see you on the ward. The same answer from the second company. Seriously? This is the reality of a system at breaking point even if you are paying for yourself. More luck with the third company who calls back to say ‘yes’ they could call 3 times a day and start within a day or so. I feel ready. The moment a decision is made, if it’s to get you home I can press go and you’ll be home. I feel a sense of satisfaction after what amounted to ages spent on the phone and waiting for people to call me back. Job done.

Confusion on top of confusion

Later that day my mobile rings and it’s the house officer wanting to have a chat to get, ‘a sense of what you were like before your fall.’  I try to be honest but am also wary of what I say. Again, it’s your confusion that is causing concern and the question they are trying to resolve is how much of this is due to being out of your own environment and what has happened to you.

I know your short-term memory has been a problem for a while but it hasn’t stopped you being totally independent. You don’t really know the day or the date, but then that doesn’t really matter to you anymore and if it does you know how to check.

I can’t answer the question. Obviously you have periods of confusion but is that a reason to stop you going home? I suggest that they do a home visit. But, apparently, this isn’t possible. The occupational therapist in me is frustrated and that’s putting it mildly. A simple question with a straight forward way of finding out. Knowing you I also ponder on the likelihood of them being able to get you back to the ward if they did a visit. I have visions of you refusing to leave home once you are there.

I ask when they will make a decision and he says in the next day or so. He tells me that the doctors are rotating tomorrow so the new house officer won’t really be up to speed tomorrow, this adds to the confusion.

This is driving me bonkers. I decide to take the bull by the horns and when I get home call the ward. I can only hold the care package for 24 hours and need a decision. The sister tells me that she’s been asked to do a mental capacity test and will let me know the outcome tomorrow. My heart sinks because I know the outcome. You will fail it and you do. The decision is made.

Loosing my nerve

In that moment I loose my nerve. I have a crisis of confidence. Every instinct in my body tells me that once you are home you will be OK. Yes, you may be confused but not a danger to yourself or others, or at least no more than you were before you fell. So many voices going round in my head. One voice chimes up,

‘Lynne, these are professionals, trust their judgement, let them do their job, respect their expertise, back off. You are not there, you aren’t seeing her as she is on an hour by hour basis. You are not there during the night’

I pick up the phone and cancel the care package and now you sit and wait in your nightclothes, by your bed, for what turns out to be nearly 3 weeks, for a POP bed to become available.

Image by Ales Krivec via Unsplash