It’s hard to believe that this time last week we were well settled in to the Royal Brompton Hospital, for Roch’s overnight sleep study. The week had been busier than usual, beginning with a call on Monday from MedEquip, to arrange a suitable time for them to move our bed. A relatively simple task, I would have thought. I was confident that Jenny, our occupational therapist from Richmond Neuro Rehab, would have explained the purpose and details of the task to be performed, but I took the liberty of explaining again over the phone, just to make sure. An arrangement was made for Wednesday, between 10am-4pm. Later, Shelley, the occupational therapist from Richmond Council, popped in to have a chat about the riser/recliner chair, which no longer does its job, unfortunately. It has served him well, but he just can’t get himself out of it any more. It’s a very comfy place for him to sit with his legs elevated (this helps the cold feet) and it’s a popular seat with all the family, including Oscar the cat (!) but Roch feels like a prisoner in it now (see blog passim). He prefers to sit in his motorised wheelchair, as he can still just about raise himself up from this to grab his rollator and take a few steps. Shelley has promised to think about it and may be able to find a suitable alternative, so we’ll wait and see.
We also did a bit of planning ahead with her, as transfers generally are becoming more problematic. Some time ago, we met with Shelley and discussed the dreaded commode issue. Measurements were taken, so that any future commode type chair could be wheeled over the existing bio bidet seat. We are not quite there yet, but agreed with Shelley that the time has come to order it so that we have it in reserve for when that day comes. Not a happy thought and not a day that Roch is looking forward to, but being prepared has helped us so far so it seems sensible to continue to plan ahead.
After Shelley, we had a visit from Donna, our lovely Hospice Nurse, to discuss the next Hospice stay and Roch's changing needs and requirements. Roch goes into the Hospice on 11th February for a week while I go to Dublin to visit family.
TuesdayI was concerned that Roch wouldn’t be well enough to go in to hospital for the sleep study, as he had a cold. But at our visit to the neurologist at the West Mid on Tuesday 29th, I asked her to listen to his chest and she assured us that his chest was clear and a head cold shouldn’t make any difference. Our visits to the West Mid are usually pretty gloomy and contrast sharply with our experience of appointments at King’s College. As Roch says, at the West Mid they usually ‘chart his decline’ and we come away with uninspiring comments such as ‘stay positive’ and ‘every case is unique’ echoing emptily in our ears. This time, our appointment felt different. Maybe the doctor was having a better day, maybe we’re more comfortable with each other, whatever the reason, she seemed to listen more effectively and didn’t seem rushed. (I’m liking her better ever since we received our copy of her letter to the GP following the last appointment, which began, “Mr. Maher attended with his very supportive wife…”!
On Tuesday, she answered our questions confidently and a few interesting points came up. She confirmed that the tongue tremor is associated with bulbar symptoms but I reminded her that Professor Al-Chalabi had told us he noted this very early on and told us that it hadn’t got any worse. She agreed, and confirmed that there was no associated deterioration = good news.
She was very good and informative on the prolonged use of lorazepam, for anxiety – Roch takes a very low dose at night at present but our local pharmacist, ever vigilant, often casts an admonishing glance and warns of its addictive properties. Our neurologist was reassuring and advised that in such low doses, there was no need to worry but that it would be wise to bear in mind the fact that it is, in fact, a muscle relaxant, which, in larger doses could be counter-productive. Later, if necessary, anti-depressants and sessions with a clinical psychologist would be more effective to combat future night horrors.The neurology clinic generally runs about 30 minutes late, which isn’t so bad, really, if you’re prepared for it. This time the hospital car park was so full, that having driven round three times looking for a space, I had to let Roch and his PA David out so that David could bring him in on time. I continued to drive around for a good ten minutes and eventually found a space. Until we get our motability car with ramp access, we have to take the manual wheelchair with us and a helper, as Roch can’t get from this back into the car, even with my help. It takes two to do it. Our lease for the Citroen is up in May and we’ve got to get going on organising better transport for ourselves so that we can go out together and Roch can be a bit more independent when we do. Otherwise we’re relying on taxis (usually Computer Cabs, using Roch’s taxi card, and they are just not reliable enough.
WednesdayWednesday brought the expected visit from MedEquip with disappointing results. The person who came had clearly not been briefed for the task. We knew we were on a loser when he looked round the room with a puzzled air and asked where the hospital bed was. I explained again that the bed needed to be unscrewed from the floor and moved across the room to give Roch more space on his side, for wheelchair and hoist, then fixed to the floor again. This was not the brief he had been given. He said that that was a two man job and he didn’t have any measurements. I offered to check the measurements with the OT but he said he wouldn’t be able to accept these from me – they would have to come through the office. Great. He said there was no possible way the job could be done that day but when I explained that Roch and I would be in hospital for the next two days, he called the office before he left. Later, the office contacted me and arranged to send someone early the next day, before we left for the Royal Brompton. This was a relief, as I was keen to have the adjustments made before the weekend and organised for our return from the Royal Brompton sleep study.
On Thursday morning, a different individual from MedEquip arrived, fully briefed. So, I thought it was a two man job? He explained that his colleague from the day before had a bad back and so for him, it would have been a two man job. Okay. Fair enough. This guy had called the person who had built and installed the custom made bed risers and knew exactly what to do to unfix them, move the bed and screw it all down again. Job done. Of course you’d need to be Louis Smith to vault your way into my side of the bed, but there you go – keeps me nimble…
So off we went by taxi to the Royal Brompton for our overnight stay. This time, we had the NIV machine (non-invasive ventilation machine) with us, known within the MND Confraternity as –the nippy. We were greeted by the same nurse who settled us in the last time and shown to Sleep Lab 1, where we would spend the night. The usual forms had to be filled in, breathing tests done and the dreaded blood sample taken. This has to be from the ear or wrist as the blood has to be taken from an artery. There was no doctor available to take blood from the wrist so the poor ear was mutilated again. This blood test shows the oxygen/CO2 levels. They were happy with the reading and Roch’s breathing test showed a forced vital capacity of 87%, down 10% from the reading taken in November. Still good however, and it’s possible that the head cold may have affected the results. We were told that they needed him to use the nippy for half the night (up to 2am), and they would then compare that result with results for the second part of the night with no assisted breathing. Any hope of sleeping before 2am went out the window at that point. Speaking of windows, the room was almost unbearably hot, so we had to keep the window open all the time, and the door ajar until we were actually going to bed. The problem with keeping the door open was that this was seen as an invitation to the restless patient next door, who was unaccompanied and very chatty. Roch’s polite silence did nothing to deter her and the fact that the nursing staff disappeared later in the evening to the High Dependency Ward (very understandably) meant she had nobody else to talk to.
However once my bed had been organised, and the door closed behind us, we were assured our privacy, although the room became very hot indeed. The nippy went on shortly after 9pm, but as it was a full face mask, it made reading difficult for him. The alarm went off a couple of times, and I adjusted the tubing. The readings were unaffected by this, but I was told next day that a particular piece should really have been attached to the mask end, which would have made leaks much less likely. What a cringe making moment that was. However, as I say, the readings were unaffected although we were jolted from our dozing states more than once in the final hour by the beeping noise. At 2am I detached it all and by 2.30am I’d say we were both asleep – only to be woken at 6.30am by the nurse coming to detach Roch from the machine measuring his oxygen, CO2 levels, and heartbeat. There wasn’t much space for her to move around so she managed, poor thing, to stumble over the wheelchair and deliver a sturdy kick to the end of my foldaway bed as she tripped on her way out. If I wasn’t fully awake already, that surely did the trick.
After breakfast (I was rather summarily summoned by a dapper gentleman to the ward kitchen area to collect our food, which, may I say, was pretty unappetising), the Senior Registrar came round at 9.30am with the results – which are encouraging. Roch’s CO2 levels were slightly higher without the nippy but not worryingly so. Her advice is to use the machine more during the day, as we had begun to do, but to also try to get used to it at night time, just using it for a couple of hours. She very sensibly pointed out that lethargy and lack of energy during the day could very well be down to reduced oxygen levels overnight. She stressed that at present there is no pressing need to use it at night but best to get used to it before its use becomes a necessity. She felt that Roch was doing really well. With regard to the tired voice and slight breathlessness he experiences at times, she thought having a chat with the speech therapist might help – to learn strategies for breathing whilst talking. Happily, he now has a much more practical and useful mask, with nasal ‘pillows’, instead of a full face mask, which means he can read and watch television whilst using the nippy. My next task will be to train his PAs in setting it all up for him.
I have to say, it’s not unpleasant being at the Royal Brompton for a sleep study (I say that as a Carer – Roch may have a different take on it) – the staff are helpful and friendly and it felt quite restful at times, just the two of us, quietly reading and chatting. I sent a text to Tom and Maura on arrival which read:
“Arrived safely for our romantic evening in the heart of Chelsea. Quiet, well-appointed room, very attentive staff…”
I could have settled him in and gone home, but it works out so much better if I’m there – there are so many little requests he has to make, so many things he can’t do for himself. I bet the nursing staff are quite happy to have a carer there, although I have no doubt the nurses would be on hand if he needed them. But it’s so much nicer for him to have me to do it and not to have to bother them. There was only one slightly awkward moment involving a commode, what looked like a cardboard cowboy hat and a nurse whose first language wasn’t English, but we got through that pretty efficiently, I thought!
We arrived home before midday on Friday and went straight to bed where I slipped into a blissfully undisturbed sleep until teatime. We slept well on Friday night, which set me up nicely for my two weekend shifts in work!
And that was the week that was.