Well our life has suddenly changed gear and I have no idea whether it’s temporary, or in any sense, permanent.

My Loved one is in hospital and my feelings ricochet continually  from liberated to miserable, from relieved to worried and from pragmatic to guilty. So when I’m asked (about every five minutes on average) how I am there isn’t really an answer which tells the whole truth.

What happened to trigger this new phase? His mobility levels have declined dramatically in the last couple of weeks so the final night before the expected arrival of the downstairs hospital bed, I padded him up securely and settled him on the sofa for the night. It worked fine except that in the morning he couldn’t stand up or balance at all. With the assistance of a carpet fitter and a physiotherapist, both of whom happened to be in the house that morning, we eventually got him back onto the sofa from the floor he’d slithered to. Then it was an ambulance, paramedics and Lewisham hospital where he’s now been for a week.

He’s on a bright, airy, quiet, medical ward and being looked after well. Earlier this week I persuaded a staff nurse to shave him and trim his moustache – all done willingly with cheerful good humour. And he’s seen a neurologist, a speech therapist, physio and lots more. Basically they are waiting to transfer him to a “Care of the Elderly” ( I suppose that perfectly decent, Greek-derived word “geriatric” is no longer PC) ward for a full assessment but at present there isn’t a bed. Every medical pro who sees him is mystified by the rapid deterioration because this is not typical of Alzheimer’s. So they are gradually concluding that there are other illnesses in the mix including, maybe Parkinson’s or Parkinsonism. Life is bloody unfair, isn’t it?

I, of course, am not surprised by any of this. I live with him (or did until last week) and have been saying for months most of what they’re now saying.  I can’t tell medics their job but –  curious, information seeking journalist that I am –  I first mentioned “dementia with Lewy Bodies” eight months ago in November. Now they’re all talking about it. Frankly, I don’t now think it matters what you call it. He is very ill and we have to manage the situation as it is. The medics are muttering about trying Parkinson’s medication very cautiously with an escalating dosage but there are potential problems with drugs not agreeing with each other or causing dangerous side effects so I’m really not sure whether it’s a good idea or not.

So how is he in himself? Very sleepy and rarely with us. He sometimes knows who I am and can tell me my name but don’t bank on it. In A&E last week he told a doctor that our eldest son was “my daddy” a word I have never heard him use in nearly 60 years of knowing him. He must have slid back, at that moment, to about age 8. Most of the time now he mutters incoherently and very softly – evidently trying to communicate something but we have no idea what. At the time of writing he hasn’t been out of bed since he left home. Nurses clean and feed him. His condition has declined even since he’s been in hospital.  Quality of life? None.

So what happens now? Well I think he’ll be in hospital some time while they attempt to sort out medication. Then there’s a suggestion that he might go to a “ neuro-degenerative rehabilitation centre” (note the contradiction in terms) for a bit before coming home to the awaiting hospital bed with a home nursing plan. I wonder? Given the speed at which he’s going down …

Back at base I’m trying to adjust my mindset. For example I need food quantities for someone living alone. I did a single person’s supermarket shop at the weekend and spent, amazingly, only £22. I’ve also put all the illness gear – packets of pants, plastic bags, wipes, special cutlery etc way out of sight. I can get it out again easily enough later if the situation changes. Or not. But at least the house looks more like home.

And I have to be honest (because that’s the way I am). It is actually easier to live and work with him safe in hospital than it is when I’m constantly worrying about where he is, what he’s doing, booking carers, rushing to get home to relieve them and all the rest of it. It’s lot cheaper too and I’m less tired. But as silver linings go it’s pretty ragged. I visit every day and tell him over and over that I love him. Not much more I can do, really.

Photograph: (Above) Chicago in 2012. (Below) Beach in Monterey Bay, California where we were fascinated to watched vultures feeding on a carcass in 2013. How well, alert and happy he looks!   I’ve decided it would be tasteless to publish photographs of him lying, helpless, in Lewisham Hospital.

My Loved One can no longer manage the stairs. In fact trying to climb them, whoever is behind him helping, has become very dangerous for all concerned as he sways, staggers and freezes unable to process verbal instructions. Big gulp and time to accept that we’ve now moved on to a late stage in this ghastly, plummeting illness. And it calls for new sleeping and bathroom arrangements.

Well, we’re more fortunate than some. One of the things which attracted us to the 1930s three bed semi we moved to in south London three years ago was the spacious kitchen in a large rear extension. So the original galley kitchen gives us an extra room at the side of the house with a downstairs loo behind it. It was meant to be MLO’s office. Once he stopped doing office-y things I commandeered it as a music room. Now, as his parameters close in, it is to become his sleeping area. I hesitate to call it a bedroom because it’s rather more clinical than cosy.

Take back what I said recently about Lewisham Health and Social Care because they’ve come up trumps and provided the hospital bed I asked for. The two therapists from the Falls Service who have visited the house several times have turned out to be good advocates. They can see at a glance how serious the problem is but beds are outside their budget. Beds are in the gift of social services, apparently.  Then one of them rang me about something else and I told her that I really couldn’t, under the circumstances, be faffing about with waiting lists. We don’t have time to wait. I would, I said, therefore buy a bed privately. “Give me an hour before you do that” she replied. The upshot was that she spoke to someone at LHSC and they agreed to supply me with one.

Yes, it was good news but oh golly, the implications. As my sister (who has, in the past, been more or less where I am now) hinted, once you start on hospital beds and sleeping downstairs then you know Ms Alzheimer’s and her pals have a new friend hovering nearby. He, or maybe she, has a hood on his head and sickle over his shoulder.

Second there was the issue of clearing the space. My elder son and daughter-in-law happened to be here when I got the call. They worked like Trojans to get the room ready and I was very grateful.  I now have a filing cabinet in the dining room, a door behind the sofa, a desk in the guest bedroom and a piano in the wardrobe – as you do. All a nuisance – and definitely not what I would have chosen in the house I worked so hard to get as I want it –  but preferable to the care home alternative which almost everyone I know now keeps murmuring at me.

Third, it is a very strange feeling when you’ve shared a bed with someone for half a century to know that  now you’re not going to – ever again.  It’s another – very big and quite symbolic – thing gone. I remember how upset my mother was when my father’s illness forced them into a similar situation. I didn’t understand at the time but I do now. It’s like incremental widowhood.

I’m a practical person though. For the last ten years MLO and I have shared a six foot bed because I  liked the ones in, for example, American hotels. It isn’t quite as large as the Great Bed of Ware but you get my drift. I had long since quietly decided that once I’m on my own I shall get rid of it, buy something more modest for myself and make more room in the bedroom which is a lot smaller than the one we bought said bed for.

Well I’ve now brought that forward. I couldn’t bear the idea of rattling about in that huge bed upstairs by myself while MLO is downstairs. On the day that I got the call about the hospital bed I popped out, while I had people in the house to man-sit, and ordered the bed and mattress I had worked out I needed. By the middle of this month, I shall be a solo sleeper in sensibly sized bed, although I still have to rattle for a few more days until it arrives.

Clearing “our” bedroom of his personal bits and pieces – combs, photograph of his mother, bedside oddments – and taking them downstairs felt very odd indeed. So did making the upstairs bed with only one set of pillows on it, when I first did it. I must confess that I surprised myself my having “a moment” while I was doing it. The upside, I suppose is that it’s one more threshold crossed and one less to face later.

POST SCRIPT: On the very day the bed was delivered MLO was admitted to hospital where he still awaits further assessment and tests. So the bed, is, as yet unslept in. More on this soon.

When I’m trying to assess – or get my head round – the helter-skelter speed of My Loved One’s decline, few things are more telling than the look in other people’s eyes. The people who see him frequently – me, the immediate family, carers and other regular callers – are well aware of the way the man we once knew is disappearing, almost literally (weight well south of nine stone) as we watch. But it’s only when MLO and I see someone we haven’t seen for a while that I notice that look of shocked, sympathetic horror and I’m reminded just how far things have really gone. When the friend who stays with us twice yearly for a couple of weeks, arrives next month for her summer residence, seven months since she was last here, I think she’ll be appalled.

Last weekend I played in the Hayes Symphony Orchestra summer concert in a church in West Wickham, Bromley – one of a number of musical events I’m involved in each year. Elder son Lucas, came for the weekend with his wonderfully practical, kind and helpful wife, Mrs W-E. Between them they have 40 years of library employment so they went into professional mode and put everything back in my office after its redecoration so I’m now better organised and  more orderly than I’ve ever been. Even more importantly they looked after MLO while I went to the Saturday afternoon rehearsal and then brought him over to the concert.

I’d arranged a wheelchair reservation and Lucas wheeled him in. As usual these days MLO was looking a bit irritable and slightly bemused. That habitual blank, middle distance stare into eternity is both sad and chilling. It seems right for him to have been there. After all he’s been attending musical performances I’ve been part of all the years we’ve been together, often in the past as a front of house volunteer. And Saturday’s was a pleasant concert by any standard. These days I’m pretty sure he neither knows or cares what’s going on although, as Lucas pointed out,  conventional concert behaviour is deeply programmed in. He sits quietly during the music and claps at the end. None of what MLO heard would have been new to him anyway. He’s known the very mainstream repertoire we played all his life. Besides I’ve dragged him along and seated him at the back where I can see him, for almost every rehearsal this term because that’s still just about OK and it saves me paying a carer. I suspect, however, that by the time the orchestra reconvenes in September taking him with me will no longer be an option.

Also at the concert were six members – three generations – of my extended family who live nearby. Two old friends, one of whom goes right back to our schooldays, came too. It’s a few months since we saw any of them in the flesh although a lot of Facebook-ing goes on. And most of them read these blogs.

I was very aware of the reactions – in eight different people –  when they looked at MLO, physically weak and frail in his wheelchair as well as being unable to string even one sensible sentence together. Each and every one of them, of course, made a point of going over to him and trying to engage with him because folks everywhere are generally extraordinarily kind and decent – and it’s taken me seven decades and a nasty disease to appreciate that fully.

MLO has known most of these eight people for many years. One was a bridesmaid at our wedding back in 1969. Yet I don’t think he had a clue who anyone was at all. When I went back to find my violin for the second half, Lucas was saying with a patient, slightly rueful grin: “You have two sons. I’m Lucas the elder one and this lovely lady next to me who cooked your lunch is my wife.” MLO just said “Really?” as if he were at a drinks party making polite conversation and getting bored with it.

The looks of pity say it all. Back at the car at the end of the concert Lucas was busy bodily lifting his father into the car (which I can’t do, of course, and have to make do with tortuous guided shuffling when I’m in charge) while I was chatting to the old schoolfriend and his wife a few feet away. Suddenly I could see what they were seeing: a very sick, emaciated, confused old man barely recognisable as the feisty, opinionated, active chap they used to know. Lucas actually thought there was a noticeable deterioration even in the 48 hours he and Daughter-in-Law were with us over the weekend.

On the day MLO was diagnosed – 29 April 2017 –  I came home from the appointment and sat at my PC thinking “Well, shall I? Or is ignorance bliss?”  Well, I’ve been fuelled by compulsive information gathering all my life – in the end it’s why I became a journalist – so, of course, for me, not knowing is not an option.  I Googled it.

The average life expectancy for an Alzheimer’s patient is four to eight years after diagnosis. Four years? Dream on. That would take us to 2021. Can you hear me laughing hollowly?. I suspect most of “my” concert groupies went home seriously wondering if they’d ever see him again.

This is not a cri de coeur. It’s an observation. I am wryly (grimly) amused to discover over the last week or two that there comes a point in this hideous disease when the much promoted doorways to “help” begin to close against you. It’s a good job I’m resourceful and by nature, a coper.

Last week I was advised to contact the local dementia support hub on the grounds that they’re “really helpful” and “can support you in lots of ways.” Well I’m sure that’s true if you – or your Alzheimer’s person – has just been diagnosed and you’re floundering. But it seems not to apply if you’re (as, ever truthful, I have worked out we are) approaching the end of stage 6 in a disease which – shades of Shakespeare’s Jacques in As You Like It – is deemed to have seven stages.

I spoke to a very pleasant woman at the hub who suggested most of the things I did long ago such as applying for attendance allowance, registering for reduced council tax and setting up lasting power of attorney. She then mentioned various local activities which My Loved One might take part in but the double incontinence was a conversation stopper. “Oh I’m so sorry” she said. “None of the centres and clubs we work with are suitable if there are toileting issues.” We ended up affably agreeing that there is nothing her organisation can do for us although she kindly sent me some leaflets – which, inevitably, told me very little I don’t already know.”

Then there was the private care agency I contacted with a view to setting up some regular morning visits. I wanted someone competent to get MLO up, showered etc and give me a bit of free time and space. When the two women who visited saw just how severe MLO’s condition now is, they emailed afterwards to say that their carers would only be able to work with us if I was on hand to assist (and, by implication, take responsibility.) Well that, of course, is no use at all so I told them I wouldn’t proceed.

I’ve also spoken to Social Services. A friendly man phoned me – once I’d asked my ever helpful GP to give them a prod because, to my astonishment, they weren’t taking phone calls when I tried to approach  them a week or two earlier. Let’s hope nobody tried to phone in with a serious emergency that day.

Now, I’m well aware that I’m going to have to pay the entire cost of any care MLO has: that’s the reward for working very hard all my life, living within my income and saving money regularly. I’ve been paying carers I found and hired independently (very good they are too) for seven months now. When I explained this to the Social Services man he suggested that I simply carry on with these arrangements because if I opt for a social services “package” they will design and control it while I foot the bill. That was fair of him, I suppose. He’s right. I do rather object to both paying and being told what to do. What ever happened to “He who pays the piper calls the tune”?   But it felt like yet another organisation washing its hands of us.

I’ve also been brightly advised by several professionals (my counsellor, MLO’s speech therapist, the physio et al) to contact the local carers’ group. “What would they be able to do for me?” I asked cautiously. “Oh they can support you. They have meetings and events for carers” comes the answer. Well, no doubt it’s an excellent service for people who feel isolated but I definitely  don’t want to create a social life out of sharing woes with other carers.  Moreover, there are dozens of events in my world which I could attend every week  – and I’d really like to – if only I could get away more. I haven’t contacted the group.

Within the family, our fabulous sons do their best and are tremendously supportive but neither is now keen on taking sole charge for too long because the responsibility is so great. And one of “my” regular carers is becoming concerned that she doesn’t have the training to deal with an accident on the stairs so she’s understandably reluctant to commit herself too far into the future as the whole situation spirals downwards.  Fortunately my other carer – and I shall very soon have to find and hire one or two more like her so that I have a watertight team to help me cope with the downward path – is very experienced, completely unfazed by the situation and willing and able to do anything that’s needed.

For the “future” –  and who knows when that will be?  – I’m planning to put a bed downstairs for MLO with a bed sensor which works like a baby alarm so I’d hear him if he tried to get out of bed. I have it in mind, when the time comes, to ask for a hospital bed and at the present rate of decline I think it’s likely to be sooner rather than later. I also intend to apply for a not very well publicised NHS service called “continuing health care” (CHC) which gives you funded daily nursing at home.  I learned about this from a newspaper article and then researched it further, by the way. No professional I’ve spoken to has mentioned it. CHC means that you’re not bed blocking in a hospital or dumped in a care home. I’m told it’s difficult to get but I reckon I can probably fill in the forms persuasively. Words are what I do, after all.

Meanwhile I’m chuckling ruefully. When Alzheimer’s is first diagnosed every doctor, other medical professional, friend, colleague or the person you’re standing next to in the supermarket queue tells you brightly that there is a great deal of help available. Not when the going gets really rough, there isn’t.

Photograph: Happier times. On holiday in Canada, 2012