Crazy Cat Lady comes home

Written on 16 February at Dublin airport.

'My last blog post was written at Heathrow as I arrived nice and early for my flight to Dublin and with time to kill. I managed to hit 'publish' on the plane before take-off in a bit if a rush! Here I am on my way home again waiting at the gate at Dublin airport for boarding but too early so I'm the only one here. Time to reflect on my short visit home and prepare to set my shoulders to the plough once more. Sad to leave my mother behind, but looking forward to seeing Roch and Tom again.  I have been surprised by how tired I've felt in Dublin. I took every opportunity to rest and spent some long overdue catch up time with my mother. A couple of long walks in Marley Park with Maura, a meal out with family and a George Clooney DVD watched with his biggest fan (my mother) made for a quiet, uneventful trip.

I haven't worried about Roch in the hospice - we spoke half way through his stay and he was so pleased with the kindness and professionalism of the staff. All his fears had been put to rest. 

The first day without him I emerged at first no longer as Roch's carer but as Crazy Cat Lady. It was freezing outside but I ventured out into the wintry garden air clad in pyjamas, cosy hooded dressingown, Wellington boots and sheepskin jacket. Accompanied by our cat, Oscar, beside himself with excitement, I took  a tour in search of signs of Spring. A funny couple we must have made. In a bygone age we would have been branded a witch and her familiar. Oscar bounding ahead, then stopping to look over his shoulder at me, before dashing up the birch tree. I kept up a running commentary for his benefit. As I fixed and filled the bird feeder and hung it back on its branch he watched with feline approval. "Bait", he was probably thinking. 

He nudged my arm as I took some photos of buds and flowers and seemed so pleased for the company. I am seriously beginning to think that I have been neglecting the emotional well being of that animal. A good session of chat and scratch and when I went for my bath, he disappeared to snooze the rest of the day away. 

Ahh that bath. Although it was mid morning, I lit scented candles, filled the bath with bubbles and soaked for ages, listening to music which I deliberately played far too loud. Now it's not that Roch would object to any of this if he was at home but I just couldn't do it. I just wouldn't be able to relax like that. I have to be on hand, ready in case I'm needed. Certainly during the day. I could make sure Tom was around in the evening and yet there's nothing quite like having the house to yourself - just for a while. 

Boarding now...'

I've been home since Saturday evening and Roch's been home since Monday. It's taken a few days to get back into our routine here but it's great to have him home and know that his hospice experience was a positive one. He had lots of visitors throughout the week and on Sunday, Tom and I brought him out for lunch at the nearby Prince of Wales pub, where we enjoyed the delicious food and lovely atmosphere.  We had signed out at the hospice reception but didn't realise we had to tell the nursing staff too! They were practically forming search parties when we got back! Oops! 

Thanks to Gerry who made sure Tom got to visit his Dad during the week and to everyone who made my visit home possible and Roch's stay so comfortable. 

It's good to know that The Princess Alice is there for us. 

The Princess Alice

Blog 

He is well ensconced at the Hospice and has been there sinc Monday . Monday morning felt a bit fraught. Both of us were anxious. For the first time, I had to use the hoist to get him from toilet to shower seat, from shower seat to standing position.  I wanted him to have a decent breakfast, but we were up late and he was worried that eating too soon before leaving for the Hospice would precipitate a bowel movement on the way. He had a substantial if late breakfast at 10.30am and the plan was to call his taxi for 12.00pm but we were delayed by a number of toilet transfers - it may have been the anxiety. 

That was the other thing of course - he needs his motorised chair, hence the taxi.  There was some confusion about transport to get him there with his motorised chair.  Too late we realised we could have requested an ambulance from the Hospice and we ordered a taxi. I followed behind with all the necessaries. The list of requirements grows steadily (high on the list is Prosecco, beer and cigars. Somewhat ironically followed by nippy machine, rollator etc..

Eventually we got there - there was even a parking space for me in the Hospice Car park, which was pure luck. 

I was dismayed to find that he had been put on a ward. But what did we expect? It's not a hotel. Last time we were cushioned from the reality of the purpose of the place as he had his own room. 

As we sat there on Monday, it seemed that compared to his roommates, Roch seemed hale and hearty. It did bring it home to both of us. His nearest neighbour seemed close to the business of dying and across the room the third occupant was in a lot of pain. 

From behind the dividing curtain we listened as two kindly young nurses gave one gentleman a bed bath.  'Now, lets just freshen you up down there,' one cheerfully remarked as Roch sent me an agonised glance. I knew what he was thinking. 

How long until he is in the same position? 

He has met each challenge bravely, at every stage there are more barriers to overcome. There is no bio bidet at the hospice so I know how much he was dreading having to ask a nurse to wipe his bum. When we spoke on the phone on Monday evening, he told me that that challenge had now been faced. 

The staff there are wonderful and so kind and attentive. I stayed with Roch all afternoon and into the early evening, by which time he was more settled there, we had seen the doctor and every effort had been made to add to the comfort of his stay. 

There are advantages and disadvantages to a shared ward. One of the disadvantages for Roch's fellow patients, I felt, might be the stream of expletives which issue from him when he struggles to stand. I realised that we have become used to this at home (i think its his way of urging himself on and it seems to help) but in the quiet atmosphere of the Hospice it suddenly felt very 'Fr. Jack'. 'B*******! F***! S****!' 

However, the good news (for Roch and his former roommates) is that he has now been moved to his own room! I'm not sure for whose benefit this arrangement was made but we're happy with it! 

That was the week that was...

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.

Tuesday

 I 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.

Wednesday

Wednesday 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.

Thursday

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.