So after 6 months or so of trying to manage H and her downhill slide into Vascular Dementia and Alzheimers, it seemed that finally we had our feet on the finishing line and she was due to go into a very nice nursing home this very afternoon. Before you sigh with relief and put the kettle on, let me rewind.
As many of you are sadly familiar, dementia is a horribly cruel disease, awful for the sufferer and impossibly difficult for the families and carers, as they try to negotiate the confusion, abusive behaviour and agitation that in H’s case, go hand in hand with this miserable and cruel condition. Someone who was kind and compassionate has had her soft edges snapped off and she has become mean and quite simply, nasty.
At the beginning, H was still very much her old warm self, just a bit forgetful and confused, but these days by lunchtime we are in a war zone of wild eyed mania and fury at the world, at my dad, at the carers, at me, at anyone who happens to be passing, even the BT engineer who was startled to encounter a half dressed H wobbling towards him shouting and waving her stick.
Trying to maintain a level head in all this is really hard, because there is absolutely no logic to her ranting and I need to breathe very deeply and try to remember it’s not her, its the illness saying such hurtful things. And much of what she says is almost credible. After all did I really manage to break in at night and steal all the carpets in the flat? Of course not, but if you didn’t know, you might almost believe her because she is so convincing. And there is absolutely no point trying to persuade her that what she is saying isn’t true, because she will argue until the cows come home that actually she has been forced to live in somebody else’s flat and that in fact there is a secret room upstairs that I hide in ( which frankly would possibly have been quite useful at moments). And it was a relief when she moved on from her obsession with planning my dads funeral (at the top of her voice at lunch as he sat there in silence, and the other residents shifted uncomfortably in their seats). At one point it looked as if we were going to be looking at Salisbury cathedral given the extravagant arrangements as I wasn’t sure we could fit a whole orchestra into the local church but luckily this seems to have been forgotten.
Her study is like a crime scene with papers ( so tidily filed and put away on a weekly basis) thrown all over the floor in a constant search for something. “What are you searching for?” I asked her. ” My father” she said.
Trying to get a formal diagnosis has been extremely difficult, mostly because every time she visited the Memory clinic team they would always asks the same questions, and as she could remember the answers, she sailed through with flying colours. The fact that she then went home, put all her clothes on back to front and filled each kitchen drawer with basmati rice seemed of little consequence. Again, the GP would pop in early on a Thursday morning and find her making porridge and complaining about Brexit. Again, all must be well in the home. WRONG.
It seems that most of the problem is that nobody the NHS has time to talk to each other and to join up the dots between the numerous departments so that things take much longer than they should, appointments are constantly cancelled or re arranged which is impossible for anyone elderly, let alone someone like H to attempt to get her head around, and it must waste so much time for all concerned. Everyone is perfectly nice once you manage to get hold of them, but if it wasn’t for the fact that I have spent most of the last month on the phone badgering everyone I dread to think where we would be now.
Things really started to unravel about 3 months ago, and it seemed we weren’t getting anywhere. Despite endless falls and scrapes and being in and out of hospital, it seemed that nobody was in a rush to get to the bottom of it . We lived each day at a time and every time the phone rang I dreaded what it might bring.
The third assessment ( after she had fallen and been in hospital) finally confirmed that she has Vascular Dementia and Alzheimers, though also put on paper that H said nobody should share her medical records with me and this was typed up in the second paragraph is if it was fact. It doesn’t matter in the greater scheme of things but I find it extraordinary that a medical professional took this verbatim from someone who was extremely distressed and confused by all their questions, when with a little digging they would have found this to be complete nonsense. After this meeting we were told we needed to get her put on a dementia drug that will ease her agitation and calm her. However we were also told that no GP can prescribe this drug and that she would have to see the prescribing doctor at the mental health team who could not give her an appointment until mid October. I could not imagine how she ( or my dad) were meant to survive until then.
Their flat is too small to accommodate a live in carer ( and my dad absolutely refused point blank to have anyone living with them anyway, and to be honest it was hard to imagine a less hellish job). We upped the care package so that someone was with her pretty much all day. The wardens who man the office at the end of the corridor would cough politely and whisper ” could we have a word?” whenever they saw me come through the door and would then go on to catalogue H’s latest antics, shouting at other residents, trying to get out of the front door in her underwear, that sort of thing.
I called nursing homes and looked through brochures. Some were awful, some wouldn’t take anyone with dementia. I went to see two homes nearby and they had places but both said they could not accept her unless she was on this drug. Two of the carers handed in their notice. I emailed and rang the mental health clinic, the memory team, the GP countless times. I explained that unless something was done H would end up being sectioned and that she was a danger to herself, to my dad and that we could no longer manage her. Finally someone arranged to get an appointment for last Thursday for the prescribing doctor to come out to see her. This doctor arrived with incomplete notes, assuming she was just there to do an assessment with little idea of our situation and would have merrily scarpered without a prescription if we had not pointed out that they had already done an assessment months previously and that we were fast running out of care options, and would lose the place at the nursing home if she wasn’t given it, so she relented and very reluctantly wrote out a prescription. At last!
The manager of the nursing home we chose came to meet us and to asses H’s needs. H seemed calm and understood that she was going to go somewhere. My dad agreed if it was only for two weeks. H sometimes thinks my dad is going too. I don’t say anything. I imagine it will be a little like going to boarding school and after a while you just get used to it. We arranged for her to return after work on Monday and that we would take H there this morning. I printed out forms and thought about what we should pack for her to take.
And then yesterday morning the phone rang. H fell getting out of bed, has badly broken her hip, bruised her leg and was taken off to Salisbury in an ambulance. I went to visit her, in the next ward to the one where my dad was 2 months ago when he broke his hip and down the corridor from where they both were when my dad crashed the car. When I got out of the lift I bumped into one the porters who had helped wheel my dad to the X ray department. “So you’re back again” he said cheerily.
I have no idea what will happen next. Hopefully the nursing home will still take her.We can live in hope because actually hope is what keeps us going.