The Names on the Doors

Out of all the residents that I can remember being there went mum first moved into the nursing home after the horror of the residential home, only one or two of those original people are left.

The lady I remember very clearly going downhill over a period of time, who ended up jusy laying open-mouthed in bed, staring at the doorway with her dark eyes, had passed away. Another old lady, very thin but with a youthful look on her wrinkled face, who used to shuffle up and down the corridor like mum does now, but eventually ended up bedridden herself, had passed away. Most recently, the chap I had mentioned a couple of times on this blog, who would be quite active and walking about and who often said the canniest of things on occasion which made me laugh, had passed away too after having not recovered from an operation.

Their names and photos are removed from their doors and replaced with someone else: them and everyone else that was there before, and only mum, one other lady and another chap remain from those early days just about 2 years ago now when she first 'moved in'. He himself remains mostly in his room now too, tended to by staff and family. I haven't seen him for months, and at some point no doubt I’ll stop seeing his family members too. I've never seen anyone visiting the other lady.

I often wonder how the staff cope with this eventuality. It must be incredibly hard, and surely you can't truly get used to it. The residents may all have varying degrees of dementia and their own challenging behaviour, but they each have their own personality and charm and it’s not difficult for the staff and visitors to get attached.

For the past 6 months or so I too have developed something of a friendship with one very old dear lady, who has the most interesting of pasts. She gives me glimpses into her life many years ago in the Malaya, and her family during the war. She often talks of the troops and people in the house and how she sometimes feels frightened about things. She thinks one of the carers is her older sister (“that tall one there” she tells me, “but she doesn’t know she’s my sister”).

What is remarkable about this lady is that she has an incredible talent for speaking Thai - no doubt part of her history in the Malaya. I was flabbergasted when I first heard her speaking to my mum in Thai (and put me to shame - I had never learnt the language, one of my lifelong regrets). She also manages to recognises me, at least whenever she can actually see, as her eyes aren't very good, and remembers my name, and that I’m there to see my mum. No other resident would remember or be able to communicate like that, not at least among those fellow residents.

I do also know when her birthday is, and she herself knows it too unless her mind is muddled and she gave me a random date, but I will write her a card, so long as she is still around by then.

The last few months have been steady for mum, who continues to manage to survive, day in day out walking to and fro along the corridors, in and out of the rooms, and despite yet another fall and a visit to A&E again she keeps her strength and is able to remain mobile, but is a skeleton of her former self in every aspect. Indeed, at a recent ‘weigh in’ that took place while I was there, she was a mere 42.5 kg.

Christmas was a bittersweet moment. She was sat inbeteen my father and I, not really knowing who either of us were and... well, at least we had our chance to be together.

We are dealing with social services and the local council finance team again for mum’s care funding. She had a review in November and it was deemed that she was not eligible for full NHS continuing care funding. Sounds ridiculous, given her condition but as things have improved with her care – thanks mostly to the stellar efforts of my sister and the staff – she isn’t as aggressive as she was, so the ‘points’ came in just on the cusp and she’ll have to make a contribution to the care costs, until such time as their (my parents') savings drop below a certain threshold. Regardless, the care she receives won't change, and this is a good thing.

It’s been a difficult start to 2018, despite the calm break we had over Christmas and New Year. The usual winter illnesses and stresses came and went; some difficult moments with our son, who is developing in his own typical toddler way. He'll be three years old in April. We are very lucky: he is a bright, beautiful boy, loving and healthy. I've no idea how we managed to do it.

We perhaps didn’t make the best choices long the way where moving home was concerned in the last years, and currently in a situation where we cannot allow him to flourish as we’d like. Part of me feels sad that we might not have done the best for him so far in that respect. Moving home again is not an option right now though, as much as I’d like us to think about it. Finance is a big thing of course, but we have something more important to look forward to later in the year (all being well) which will impact our home life even more so, and in turn could make circumstances even more difficult. But hey, this is the way things are.

For the past month I’ve felt the weight of this growing on me more and more. Perhaps it’s just the time of year – I was so glad to see the back of January, and turning 39 was a non-event – but something is stewing (in more ways than one), and although my wife and I both feel anxious about the coming months, for ourselves and our son and our family unit and circumstnaces, we agree that "what will be will be", and we'll face it together.