C is for Choice

'If I ever go that way, I'm going to kill myself. I'd rather die than end up like my parents.'

I've always found it relatively easy to talk about Dee's battle with Alzheimer's. Some have been more difficult to cover than others. But now, as we're dealing with much more challenging stages of this disease (because everything up till this point has been a walk in the bloody park), my focus has been shifting from the entertaining and heart-felt to the hard-hitting and serious.

So what better hard-hitting topic to discuss than assisted suicide? Oh yes. Is it harder to watch someone mentally slip away or physically disintegrate?

This has been something I've considered for quite some time, and you have the BBC to thank for this post. It was their brilliant documentary 'How to Die: Simon's Choice' that has led me to writing about it. Simon Binner was 57 years old when he was diagnosed with Motor Neurone Disease. The documentary follows his and his family's journey from diagnosis in January to his final moments before his suicide in Switzerland in October.

There were so many parallels between Simon's and Dee's attitude to life, but their illnesses are worlds apart from each other. Simon faced a completely physical deterioration, slowly losing the ability to walk, stand, and even communicate in any way. Dee, on the other hand, has nothing wrong with her physically (apart from the odd ridiculous outfit) and is instead becoming more and more mentally incapable of processing even the simplest of sentences.

And yet, they both end up needing a similar level of care. Someone to wash them, dress them, cook for them, help them communicate and navigate their way through every day life. The difference between the two is Simon is fundamentally the same person throughout his suffering, able to make decisions and be sound of mind enough to know what he wants until the very end, when he dies surrounded by his wife and close friends.

Unfortunately, for Alzheimer's and Dementia sufferers, the ability to choose is lost pretty early on. And then you're left with an existential dilemma. The Dee we all knew and loved before Alzheimer's consumed her would have certainly wanted to die before getting to the stage we are at now. In fact, she made a point of telling us on numerous occasions, normally after visiting her own parents in their care homes. But the woman whose hand you're holding to help her get to sleep at night really doesn't want to die. And who are we to argue that the Dee of today is less important than the Dee she used to be? At what point do you say she's no longer Dee, and is all Alzheimer's and fog?

I'm under no illusions that if Dee was still sound of mind, she would most definitely want to get on that plane to Switzerland. I'm finding it much easier to understand where she's coming from, having developed the same attitude myself.

Simon is able to say goodbye properly, enjoy the final few parties, gatherings and reunions and say all the things he wanted to say. This makes it even more important to me that the terminally ill individual in question is able to choose how and when they go. One of the hardest parts of watching a loved one with Dementia slowly slip away from you is the inability to say goodbye, have those precious final moments where you can acknowledge what's happening, help each other come to terms with the loss that is happening, and create some fond memories to keep hold of once they're gone.

The reality is, we lost Dee a while ago now and are unfortunately way beyond assisted suicide being an option for us. Instead, we're left with a shell of the woman she was, a tormented soul who paces around in a constant state of anxiety, who cannot grasp how to make a cup of tea, who can't wash herself, who hallucinates on a daily basis and hates being in her own company. Who, in their right mind, would want to live like that?

I'm climbing Mount Kilimanjaro at the end of this year to raise money for the Alzheimer's Society. Head on over to my donations page and help me reach my £5k target! Ah go on.

W is for World Mental Health Day

This Friday is World Mental Health Day.

Did you know that? I didn't. I never remember these anniversary type days. National French Fries Day, International Polar Bear Day, Pet Obesity Awareness Day, National Hug a Ukrainian Day (I do actually remember this one because one of my close friends is part Ukrainian... you know who you are).

So, in the interest of aiding this very worthy cause, I feel I should take this opportunity to go through my journey with Dee's Dementia thus far. Nobody likes talking about this shit, but sometimes you just have to. For the greater good. Like they say in Hot Fuzz. 'Pack it in Frank you silly bastard!' They say that too... Perhaps not as relevant for this post.

Anyway. Deep breath everyone. Better get yourself that glass of red.

When this all began a couple of years ago, it was the minor things that made me question what was going on in Dee's head. She'd retired from a high-pressured, fast paced job as a headteacher and lecturer, had been travelling with Father, and was volunteering at a local stately home taking people on tours of the home and grounds.

She had started to sleep for longer periods of time, was dressing inappropriately for the weather (I have striking memories of her wearing knitted dresses to social engagements at the height of summer and complaining she was too hot), and her ability to debate and make interesting and thought-provoking contributions to conversations became a rarity. She was still able to follow a conversation to a certain extent, but would then use filler to hide the fact she didn't know the answer or what was being talked about. 'Oh Lucy will be able to tell you more about that.' 'You have such a lovely face.' To visitors, these were not issues to be concerned with. To me, I knew something was changing.

At the time, I blamed this on her recent retirement - she was finally relaxing, letting herself go, not worrying about life. I also wondered if she was actually a bit deaf. She seemed to be aware of what was going on but unable to register what was being said. At this point, I didn't really understand that it wasn't her lack of listening skills that were the problem - she no longer had the same ability to process the things said to her.

Then, perhaps the most noticeable stage of this disease began to creep its way into our lives - the repetitive questions. Dee became increasingly confused, wondering where people were, asking the same questions and telling the same stories. She starts to miss appointments, get confused about arrangements she's made with friends, turning up in the wrong place or at the wrong time.

She also started to take an irrational dislike to people. Not just people, but old friends, family, people who had been part of my childhood and a massive part of her life. She began to confuse them for others, calling them different names, forgetting when she'd last seen them, which made her feel like she was being abandoned by her nearest and dearest.

This leads me neatly onto the next stage - anxiety. Dee became increasingly agitated and constantly worried about small things. She fixated on them, needing constant reminders that everything was OK, that she was OK, that nobody was going anywhere. Now, with hindsight, I can only theoretically conclude that this was her way of understanding that something wasn't quite right. Another vivid memory I have is of her finally admitting to me that she felt lost and alone, finally addressing what was happening to her in her own way.

These lucid moments of realisation pepper her condition right up to the present day, and it's these moments that are one of the hardest parts to swallow. Most of the time, I think this disease is much worse for the families and friends of Dee, but then she has these astonishing and (thankfully) fleeting flashes where she fully recognises the extent of her condition. It's the panicked, desperate look on an old mother's face that's the one you never forget.

Deep, eh? Don't say I didn't warn you. Where's that bottle gone?

So, we've reached the anxious, repeating stage. She's slowly losing her grasp of reality. Her spotless kitchen has become less so with the addition of dirty utensils and pots put back in the drawers and cupboards before they're even washed. Her once beautiful, colourful garden is slowly becoming overgrown and more out of control... Almost like a...wait for it... METAPHOR of what's happening in her mind. (Hello English degree. Thank God you weren't a waste of time!)

The concept of time then becomes a problem - she complains she's been left alone all day when she's only been alone for an hour. She hates being left alone. So much so, she begins to imagine an extra person in the house. Father has mentioned to me on many occasions that she often thinks there's another person in the house but in a different room. It wasn't until recently that I witnessed this for myself. It took me a good ten minutes to convince her it was just us. It was actually pretty eerie.

And here we are. The present day. It's important to note that all of these symptoms are on-going, alongside each other, complicating the condition further.

But well done! You've made it to the end! Thanks for sticking with me. Sadly, it's not quite the end of the journey for the Rider family. We still have quite a way to go. But I'll let you finish that glass of wine in peace.

Oh, it also happens to be my Birthday on Friday. It'd be really quite a lovely present if you could donate money to my ludicrous half marathon efforts.

L is for the Little Things

There are a lot of little things that have come from having Dee in my life. I love broccoli. I genuinely think broccoli is probably the tastiest and funniest looking vegetable and I'm pretty sure this obsession was born of being the daughter of Dee. I'm also partial to a good bouquet of flowers, something that I've definitely inherited from Dee. (I'm sat in her front room and as I type this, I can see four vases with flowers in them... in ONE room.)

Even Dee herself is becoming one of these little things. She always told me she would shrink as she got older - and she wasn't wrong.

But there's other little things that have come from this illness that are littered about the house. Dee has got into the habit of buying trinkets and bric-a-brac every time she leaves the house. My parents have gone from living in a fairly minimalistic, nicely decorated home to a Museum of Charity Shop Junk. Ballet dancers, china boxes with cherubs on top, candleabra, elephants, ships, decanters, ship decanters, cats, teapots, cat teapots... I need a lie down.

Then there's the other little thing - the small talk. Dee is now well rehearsed in this. The Queen of Deflection. The Mistress of Chatter. Any time she doesn't know the answer (which is becoming increasingly regular) she passes the buck to Father, or change the topic via the medium of compliments.

But I've realised the biggest little thing of all this is to remember the little picture. This is key to making this whole scenario a bit more bearable. When looking at the bigger picture, we're faced with decades of care that will cost an obscene amount of money, not to mention the pain and grief that comes with deciding when she's actually finally left us for good (death is normally the go-to stage in all this, but sadly Dee will mentally give way before any physical change, so when's the final moment of passing with that?) and then there's the guilt that comes with deciding enough is enough and we should move on with our lives.

So the little picture is incredibly important. One doctor's appointment, meal, day, week at a time. This makes the mountain more manageable.

Oh. And one more little thing... I may have signed up for the Bath Half Marathon... no biggie. Donations can be made on my Virgin Money Giving page. Big donations.

A is for Answers

This is probably the most difficult post I've had to write so far on this journey into the foggy world of Dementia and Alzheimers.

 After months of discussing, predicting, arguing, counselling, convincing, testing and asking questions, the day had come to get some answers. At 3.15pm, we will be sat in the Doctor's office, given a diagnosis and talk about the different treatments we can try moving on from that appointment.

Of course, this wasn't quite the way it turned out.

We arrived at the hospital with plenty of time and it turns out not much information. We hadn't received the final letter confirming the appointment and only had some referral letters from our first session with the registrar. When the Neurophysiology department had no idea who we were, and the Medical Day Unit's reception was unmanned and apparently 'closed', the panic began to set in. Cue the clichéd run around different floors and departments, increasing anxiety that we'll miss the appointment and raised tension between the family which manifested itself into shouts like 'read the bloody sign! It says outpatients this way!'

We eventually made it to the right department, ten minutes late, flustered and agitated. We spent at least 15 minutes waiting for lifts because the stairs were only accessible to staff - no idea why. (Is this some new hospital rule?! I really don't understand.) We then had to wait a further 40 minutes because the said delay had meant the other patients, who had made it on time without getting lost and harassing unsuspecting hospital porters, were ahead of us in the queue.

Finally, Dee's name was called, we were summoned into a little room with a big number thirteen on the door (this was not the day to be superstitious) and we were moments away from understanding her fate.

It turns out, two years on from the start of this battle, there still isn't much we could understand. After months of family discussion, convincing Dee to go to the doctors, the blood tests, memory tests, consultations and MRI scans, we were told she 'may have alzheimers' but further testing was needed to get a definite diagnosis. We were also told that she can be prescribed medication, but this medication was by no means a miracle cure. We were told we could make changes to her diet, but we'd be better off seeing what effects the medication may have first.

We were told many things, but none of them were definite answers. Every professional Dee has seen has been amazingly helpful, understanding and pleasant, and this lack of information is certainly not down to incompetence. It turns out, there just isn't much you can be sure about with matters of the brain.

This entry was originally called 'D is for Diagnosis', but we're still waiting for an official one. Meanwhile, a realisation has descended on the family that Dee will not be getting better, that there is no miracle cure, and that this will get a lot harder. I am not in the habit of ending these in a negative fashion, but Dee's future does not look good, and I would be cheating you of an accurate depiction of how this Dementia thing goes if I did sign this off with a positive outlook on life. There is an inescapable sadness that has fallen on the house tonight.