My mum was always right. Always. Even in the face of irrefutable evidence to the contrary she was right. Even regarding specific medical things that she could have no conceivable knowledge or experience of she would argue with me (who has a medical degree) about diagnoses and treatment. Her sources of information were wide and varied but usually involved day-time television, popular magazines or snippets of conversation she’d picked up from other people. These were invariably presented as hard fact and she would narrow her lips and fold her arms as if to say ‘ that settles the matter’. We used to joke that if you looked up the word ‘Right’ in the dictionary there would be a picture of my mum next to it – you get the idea.
Looking back there may have been warning signs early on (such as a temporary personality shift that we put down to menopause a few years previous) but the first time my sister and I became genuinely concerned about mum was when she broke her shoulder. It was your classic tripping-over-a-paving-slab accident featured in many “No win, No fee” adverts for personal injury claims companies (we obviously did not make a claim – people don’t really do that do they?) She was put on some fairly heavy-duty pain relief and seemed to be confused about when to take her medicine. We assumed this was due to the medication itself; I suggested stopping the codeine altogether (fab stuff for pain but not great for mental clarity) and we pressed on with our lives.
As weeks went by mum became withdrawn, put on weight and seemed a bit low. My sister and I had recently moved closer to home to be near family and raise our children in the area where we had been so happy ourselves. I had a busy life; new house, new job, two pre-schoolers to attend to, so I was a little slow on the uptake but then mum was only 58 years old and dementia was low down on the list of possible causes. Her presentation was (and remains) unusual. It seemed more like depression in the early stages and we thought that the shoulder injury and subsequent osteoporosis diagnosis was making her feel frail and elderly (one of her worst fears). The lack of exercise post-operatively accounted for the increasing weight and this seemed to add to her low mood. Along with her fear of aging mum also had an obsessive preoccupation with not getting fat. My childhood memories are littered with dietary fads. I remember the F-plan, the Slim-fast plan, the Mad-Lizzie workout, the Rosemary Connelly diet, the bizarre ‘Resistance Bands’ (large pieces of elastic strung across the wardrobe seemingly designed to catapult a person out of their bedroom), the balancing tables (theory being that they gently vibrate all the fat off your body while you relax – nice idea) as well as the more conventional Slimming World and Weight Watchers schemes (is she counting points? Is she having a green day or a red day? etc, etc). Her belief in being thin (or rather, not being fat) meant that her first piece of advice to me when I returned home in tears having split up with a long term boyfriend was to ‘lose 2 stone’ (it turns out she was right – I did feel fabulous afterwards).
Anyway, being a size 18 was not part of my mum’s life plan and it indicated a significant underlying problem so my sister and I asked gently probing questions (she completely denied feeling depressed), tried to rekindle her interest in diet and exercise, took her shopping and generally tried to raise her spirits. It didn’t work. There followed a couple of incidents when mum forgot to turn up for babysitting or hadn’t managed to pass a message on to dad, small things but when added to her mood it spelt trouble and my sister and I voiced our concerns to our father. He found these conversations difficult and to a degree I think he felt that by agreeing with us that he was in some way betraying mum.
A few months went by. We were all guilty of trying to ignore the decline, hoping things would get better, but mum’s speech was deteriorating markedly. Her word-finding was terrible and we were becoming increasingly frustrated (although interestingly she was not frustrated in the slightest). Hearing her relate an anecdote was like pulling teeth – there were agonizing pauses and a simple story took ages to communicate without there being a clear punch-line or finale at the end of it. It was like having a conversation with a recently articulate child. You smile, you nod encouragement, you’re not quite sure if they’ve finished their story or not. I would find myself not wanting to catch my sister’s eye so that I didn’t start giggling when mum was talking (see ‘Am I laughing at mum or with her’ post) and all the time I was thinking ‘hang on, this doesn’t fit with depression. People who are depressed can still talk properly’.
Eventually we managed to persuade dad to take mum to her GP. Admittedly her presenting symptoms were vague and non-specific – I can imagine that my dad saying ‘my wife has put on weight and takes a long time to tell a story” would not have set enormous medical alarm bells ringing but the GP ordered a set of bloods which came back as normal. A few more months went by. This time I took mum to see the GP myself and we agreed that a referral to memory clinic might be appropriate. I left the surgery feeling slightly guilty that I was even thinking about dementia but also massively relieved that now the appropriate services would kick into action, my fears would be disproved and a simple, easily-treatable cause which I had unaccountably overlooked, would come to light. ‘Hooray! We thought you had Alzheimer’s!’ we’d chorus joyfully, ‘But how wrong we were! Thank goodness it was just xxx all along and now that it’s treated everything is back to normal!!
And so that is what happened. Which is why the blog is ending here. Obviously not. See next post ‘Getting a diagnosis / How to navigate the system without losing the will to live’.