A few years ago, this guy told me that his wife had decided to stop working because her parents were poorly. They had many health appointments that she basically couldn’t help them and work at the same time. I accepted it but didn’t truly realise what it meant until I was in this position.
Managing Roger’s health needs made it impossible for me to work even though it didn’t take up all my time. I hear you thinking, ‘How does that make sense?’
My time was no longer my own
I received calls from health professionals, council staff, the carer, the agency that employed the carer, family, staff in A&E and more whenever they were free. We didn’t schedule appointments to ensure that I was available. That simply wasn’t possible.
All these people are overworked and stretched beyond their capacity, time is scarce and their energy is something that they do/should protect forcefully.
So when they have something to ask or share or arrange, they will call when they have some availability. It’s hugely difficult to call them back because they don’t usually leave a number. However, when they did leave a number, they weren’t been available to take calls when I called back so I had to wait for them to try again!
This meant that whether I was cooking, eating, walking, driving, coming back from a day or two away, visiting friends etc. if they called, I would answer because they wouldn’t have rung if it wasn’t important and as I said, missing the call and trying to find out who rang, what number to reach them on, or simply calling them back and them being available at that time, was a humungous task!
If they emailed or messaged in some way, it would be easier but I guess that would leave them open to having a bigger workload than they had already.
Appointments
His appointments weren’t on specific days or at regular times so I couldn’t organise my time accordingly, for example, I couldn’t help Roger in the mornings and then work in the afternoons.
Some appointments were about 20 minutes away from where I lived but others were over an hour away so factoring in the time to travel was another issue.
There’s also the cost of each appointment – parking, paying for public transport, fuel etc.
Finally, the time. Appointments didn’t always run on time, so a 10-minute appointment may take 3 hours. Additionally, some appointments resulted in follow-up tasks that needed to be done there and then, e.g., a blood test or an X-ray. Therefore, I began making sure that I didn’t plan to do anything after an appointment because I simply didn’t know when I’d be free.
The physical and cognitive energy needed for appointments and the aftereffects
Due to the strain on the NHS and the scarcity of time; staff are under pressure and appointments need to be speedy. This means that questions must be answered quickly, clearly and accurately.
I recall going to our first appointment with Roger. All we knew, was that he had been referred from one neurologist to another to obtain a second opinion. Roger wasn’t seeking a second opinion, the neurologist was.
Anyway, it transpired that the appointment was actually to give a diagnosis. The neurologist asked Roger lots of questions and told us that she wanted to hear from us afterwards. There were many discrepancies or gaps but neither of us was able to quickly make a note of the questions while she was asking them so that we could come back to them after she finished speaking with Roger.
When it was our turn to talk, I asked her if she had the questions that she asked him written down, assuming that she asked the same things in each appointment. She didn’t have any such thing and she couldn’t begin to tell us what she’d asked so I tried to think back and share what was missing or inaccurate.
I felt like I was in an interrogation. She was firing further questions at Roger and then us and wanting answers before we had a chance to speak. She was angry that we didn’t know when specific changes took place and she made no effort to hide her judgement or frustration!
After that, I started to put a timeline together, detailing what happened, when it happened, which medical team it involved and so on. I also made notes, during and after appointments, as the information would be needed in the future.
Even though these documents were a Godsend in more ways than one, during an appointment, the health professionals don’t have the time to wait while we wade through information to find what they need to know. I soon realised that I needed to know the details, remember the information and be able to recall it very quickly, in order for Roger’s needs to be understood and his health needs to be met.
This was difficult and draining. Therefore, after appointments, I’d find myself unable to work or carry out tasks that needed me to concentrate. This is what I mean by not being able to work even though helping Roger didn’t take up all my time.
Part 9 of 11: ‘Is it necessary to have things documented when someone has a long-term condition?’ will be published on 24.02.25
Previous articles from this series:
- Part 1: When Roger was diagnosed with PSP
- Part 2: Why we dropped everything and rushed to India
- Part 3: Find out what had to happen before they gave us permission to return home
- Part 4: Finding a care home
- Part 5: Settling into the care home
- Part 6: Finding a live-in carer
- Part 7: How did supporting Roger affect me?
