If you have a disease that people can see by looking, especially if it involves bones sticking out of you, maggots surging round in a wound or anything with dribbling, blood or a trailing leg, onlookers are frequently quite keen to permit the treatment of it to be wholly the responsibility of the medical profession.
Not so with invisible diseases, particularly tricky stuff to do with the brain, an organ located in the skull, usually out of sight and out of mind to all but the enthusiastic amateur, apparently. I recall family friends some years ago advising a family member to throw medication for depression down the toilet and have heard of similar advice being dispensed with enthusiasm by the unqualified. Now my mother is the subject of such assistance and so am I.
Over the last eight months, together with the care agency, I have painstakingly constructed round my mother an artificial version of reality in which she believes she is running a house, in charge of everything and at home in her own unchanged world. The reason I have done this is that the familiarity of this construct is soothing to a person with a demented and shrinking brain. She is fortunate to have lived in her current house for eighteen years, had she been there for a short time, as in for instance someone moving to their retirement property and then being diagnosed with dementia, it would be very much more difficult to do. As memory is challenged by blockages in the brain, resulting in parts of the brain dying, it is the best established and most frequently used neural pathways that are most easily accessed; the more I can keep things familiar for my mother, the more easily will she be able to function.
So successful has this been that for uninformed people on very short visits, things can actually appear unchanged, though if anyone stays longer than quarter of an hour or attempts an extended topic of conversation or sees my mother try to walk further than a few steps on the level, her dementia becomes apparent.
Earlier in the week she decided she wasn’t well and should send for the doctor. As permitting her to feel enabled is part of her treatment, the carers let her do so and informed me the doctor had been summoned. The doctor who attended was a young registrar, who had not, apparently, studied the case notes. Called for breathlessness, she issued a prescription for skin cream, a suggestion that my mother should pour olive oil in her ears and told my mother to go to the surgery for an ECG and blood tests after a fortnight of putting oil in her ears. As my mother has not left the house for three months and is terrified of falling over and dying on the pavement, these instructions were less than helpful. Worse was to come.
The care agency rang me about the outcome and we all agreed that the skin cream was quite a good idea, as were ear drops prior to syringing in the fullness of time. It took four people quarter of an hour to arrange for carer’s shifts to overlap so that the prescription could be fetched and we hoped that by the time she needed to go and have them syringed either the weather would be better, she would be dead or we’d have arranged a district nurse to visit and do it but nothing in a hurry, the essence of care at this stage being slow and steady, nothing precipitate or in a rush, the aim being every day the soothing same and more of that to come. Very easy, predictable and understandable.
And then along came the second loose cannon in the shape of a friend, who having been on a cruise for six weeks, had forgotten how ill my mother was, was entirely taken in by the construct and whose guilty conscience prompted him to do something. ‘Helpfully’ he listened to my mother’s version of the doctor’s visit, took the prescription to get it dispensed ‘urgently’ and arranged, with my mother, to collect her at half past nine the following morning, when he would ‘pop her in the car’ and take her to the doctor’s to the other end of town, to get her urgent ECG done without an appointment and probably urgent blood tests too, he thought. He then disappeared with the prescription and was incommunicado for several hours, as I attempted to reach him, having phoned my mother, my sixth sense in overdrive. She was hysterical but keen to please, and spent an interesting night waking every hour or so, terrified of being late for the ‘urgent blood letting.’
I did eventually reach the friend and for once became my mother’s daughter, which I can, on occasion do, having had the training. He deflected the conversation after half an hour and probably went and had a good cry.
Yesterday I rang the surgery from my mother’s house and the doctor later rang me at home to apologise for the keen young doctor. He completely agreed with me that my mother should not leave the house, possibly at all and put her on the list for a visit by the district nurse to syringe her ears in a fortnight. I went to the chemist and fetched ear drops in the afternoon which avoided the looming scenario of my mother pouring the entire bottle of Crisp and Dry into her ears twice a day. How long it will take to convince her that blood letting is not on the menu, I cannot say. I have reassured her she does not have to go out and die on the pavement. I am expecting to have to reiterate this indefinitely. So it is that the uniformed, brightly cheerful ‘helpfulness’ of fifteen minutes may take weeks to undo and get us back to where we were. I think I may now have to start a new regime in which carers stay in the room with visitors and flatten any stupidity as it arises, before it can go galloping off with the insane into realms we’d rather not visit. My mother, of course, being utterly incapable of walking more than three steps, being driven to the other end of town, breathing in a strong wind, having any medical procedure done without weeks of mental preparation or doing any of that without another heart attack. Having lost two stones she is now officially frail, though not apparently thinner to the friend who did not know that I have replaced her entire wardrobe with three sizes smaller, easily washable clothing which is all stretchy, so even she can get into it and the carers will be able to dress her threading it all up her arms if necessary.
Then the fates turned their attention to me. Lucky me. The mortgage providers contacted my mother’s solicitor, who in a similarly enthusiastic manner fired off an email telling me they had done so and that he had arranged a team who would counsel me through the process, which he was expecting to take many weeks of my time and undisclosed amounts of my money which my ‘team’ would be contacting me about shortly. He also said this was a very serious step and had I thought about it? He obviously doesn’t read the dementia diaries, or he’d know, as you do, that I’ve done nothing but all of this for months, and that I’m ready to take the final step of signing the papers if he’d be so good as to pass them on to me.
I haven’t written stiff emails to a solicitor before but I have now. I haven’t heard back yet.
I can’t believe how hard it is to deal with this disease and I cannot believe how much more difficult it can be made by the efforts of enthusiastic amateurs who think they can pop in and help without as much as a by your leave or consultation of any kind.
Since my father died I have found myself in a strange darkened theatre groping my way up the gangway with my arms full of sustenance for the compromised and the aisles full of the outstretched legs of people who I’m not even sure have tickets.
But then that’s Amateur Night at the Ritz for you.
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JaneLaverick.com – tired and angry but sticking it out to the end.