One of the things I have realised about looking after people with dementia is that their past is often resurrected in their present, therefore an introduction to set a context for my ramblings might be useful.
My Auntie’s Story
My Auntie lost her Mum when she was two and together with my Dad, her brother, was cared for by various family members while being raised in some the poorest tenements of 1930’s Scotland. Her Dad who was in the army, died when she was in her teens so she had to grow up fast becoming Mum and Dad to some of the nine family members she shared a room with. She married young and had a long, if stormy marriage, to my alcoholic Uncle. They were unable to have children and, as her brothers only child, I was treated as their own whenever I visited. I adored them, despite moving away from them and was devastated when in 1997 my Uncle became terminally ill with cancer and hung himself. My father, her brother, died suddenly from a brain tumour the following year and although my Auntie coped well with with the practicalities of living alone she found the grief hard to bear.
My Auntie continued to live independently but in 2003 her neighbour called me to tell me something was wrong and my Auntie was acting strangely. When we arrived nothing could have prepared us for the sight that met us. My Auntie was huddled in her chair wearing at least four layers of filthy clothing, buckets of clothes in stagnant water sat on the floor adorned with spilt dog food and crawling with maggots, burned out cigarette filters littered every surface, abandoned, forgotten and left to smoulder. On the sideboard were at least fifty tins of peas, baked beans and peaches, and hundreds of packets of crisps from the corner shop opposite. The floor was sticky with dog urine and faeces, and a bucket of human excrement sat in the middle of the room, a stark indication my Aunt had forgotten where her toilet was.
Things were no better in the kitchen. Boxes of out of date frozen meat pies were stacked up on the worktops, mouldy bread scattered beside it, the floor was sticky with defrosted frozen food stored in the fridge and oozing out the door. A small ceramic teapot was balanced on the roaring gas hob, wobbling precariously and red hot. The stench was overpowering and will stay with us forever. The contrast from the pristine home run by my slightly OCD Auntie who had a colour coded cloth for each job, and wouldn’t leave the house without “her face on,” couldn’t have been starker.
I stood in the kitchen and sobbed in my husbands arms, unsure of what was wrong with my lovely Auntie, confused about where to start to tackle the situation, and acutely aware that with no other relatives, my Aunties future was ultimately our responsibility.
The only blessing was my Auntie seemed oblivious to her situation, her feisty nature subdued and replaced by compliance. The 150 mile distance between our home and hers was an obvious insurmountable obstacle in our adoption of her care and she calmly agreed to us selling her house for her and buying a flat round the corner from us. The wheels were put into motion and despite the difficulties of organising a long distance house sale with an extremely confused resident, a few months later we reached the point of no return, moving day.
Despite daily phone calls counting my Auntie down to moving day, it seems naive in retrospect to have expected her to have taken any action towards it. As we pulled up with our van, she tottered back from the corner shop, tin of peaches, crisps and her obligatory loaf of bread in hand. When we entered the house unsurprisingly nothing was ready and the chaos from our previous visits had returned. Some eight hours of ruthless culling ensued whilst desperately trying to ensure items most precious to her were salvaged, finally the van was packed the dice were cast and my role as her carer began.
Considerable care was spent ensuring her flat was as familiar as possible: plans were drawn of the position of ornaments on the side board and which pictures hung in which room. Risks were assessed because although at this stage I was unaware of quite what was wrong with my Auntie we were fairly certain, after the scenes of horror we had witnessed at her previous house, that knives, gas, and naked flames were a very bad idea. It is indicative of my Aunties mental state that her change of residence proved less stressful than one would have imagined and despite one rather terrifying instance of her wandering off alone, she settled in remarkably well.
Getting her assessed was a priority and my GP quickly referred her to a specialist who conducted some tests. Despite the fact things were clearly very wrong I still found the level of her deterioration difficult to comprehend. She couldn’t identify the day, month, year, season, the place she was in, the Prime Minister! She couldn’t follow basic three step commands, or remember a simple piece of information she had only just been told. In fact the only things she was sure of was her name and her birthday. Things didn’t look good: my Auntie was given a diagnosis of vascular dementia probably caused by a 60 a day for 60 years cigarette habit, hypertension (high blood pressure), obesity, inactivity, poor diet, and unbeknown to us at that stage, diabetes.
What to do about it was a whole new ball game. My Auntie had flatly refused medical care throughout her life shunning medication, so any treatment for the dementia was out of the question. All the time she could refuse drugs, she would so medication was not an option.
Managing her day to day needs was a little easier. At first I struggled to trust anyone else with her care but it became apparent with my full time job this wasn’t fair on either of us, so help was sought through Adult Social Care and my Auntie was appointed a Social Worker. He talked through the options available from carers in her own home to full time residential care in a nursing home. My Auntie has always been a feisty lady, fiercely independent with a fiery Scots temper to boot, conforming to the restrictions a care home would be an impossibility, no-one tells her what to do! It was decided to try a care package in her own home and together with the social workers support we organised morning carers through a local agency, meals on wheels for lunch times, and a day centre outing a couple of times a week. My role, with my newly acquired power of attorney, would be to monitor how the care package worked, carry out evening care visits, do her laundry, manage her finances, carry out her shopping and liaise with her external agencies such as the incontinence service, physios, district nurses etc.
In a nutshell this is how it has remained for the last twelve years, despite my situation changing with the arrival of our children, hers has remained largely unchanged. Her deterioration is gradual but relentless, where once she would miss me if I had a days respite, now she often fails even to recognise me. The 60 a day cigarette habit gone as she has forgotten she smokes, a tiny blessing in an otherwise bleak prognosis.
My Mums Story
Due to an extremely controlling belittling father, Mum has battled depression for most of her young adult life resulting in suicide attempts, alcoholism, bulimia, being sectioned, electro convulsive therapy, insulin shock therapy, and heavy doses of prescribed amphetamines. Fortunately she met my father in her late thirties and having a husband who loved her, and then a baby to care for soon after, made an enormous difference to her life. Throughout my childhood, for the first time in her life, her depression was under control.
My Dad’s death at just 70 hit her hard. She missed him incredibly and struggled to cope with day to day living. She had suffered from arthritis from her early forties which resulted in mobility issues, falls and severe pain, and despite us moving her into a purpose built flat it became apparent she needed more support than we could give her living independently. Six years ago it was decided we should move her in with us to provide her with support, and so we could enjoy each others company. Little did we know at that stage what lay just around the corner.
My Mums granny annexe suited her well, all her practical needs were met and we were all much happier knowing that if she needed us we were under one roof. Unfortunately alarm bells started to ring very shortly after she moved in. Initially special dates were forgotten, or she’d ask what day it was. Her queries were couched casually in discussion, but when I discussed her with our GP he said he thought she was skilled at disguising her memory issues and had been doing so for quite some time. Retrospectively this seems highly likely but we were so preoccupied with addressing her physical needs we failed to recognise her changing mental state, particularly only seeing her for short periods. My Mum was referred to the specialist and I was devastated after testing and a brain scan to be told she had alzheimers. It was not good news: the specialist said her scan was indicative of a 96 year old not a 76 year old, deterioration was significant and would be progressive. I broke down and sobbed, my Mum remained unmoved to both my reaction and her fate, indicative of how far she had already deteriorated even then. To put it in context, the specialist continued, the next five years would be critical, she may not even recognise you towards the end…
…that was six years ago.