Diary: 14th September 2020 – Magic

The last few weeks haven’t been easy. It’s taken large doses of self care and determination not to let the sadness of being unrecognisable to Dad allow life as I knew it grind to a halt. I’ve of course kept up visits and continued our lunches and chats – however factually inaccurate – just trying to enjoy the time but of course it’s tough pretending everything is “OK” when it’s not.

A friend happened to ask me the other day whether I’d put any further updates on this site since that day. I said I couldn’t manage it. He acknowledged that “it must be difficult to add anything else when it all feels so negative right now“. And he was right. I’ve always tried to find the positive (or worst case pragmatic) view but these past few weeks have been more of an uphill battle than any other time in this journey.

Following various updates to Dad’s Occupational Therapist, she agreed to redo his MMSE exam and the news was far more alarming than expected: he had dropped 4 points (from 11 to 7) in just 3.5 months. This put him straight into the “severe dementia” category and – I’m told – that this highly rapid progression of the disease is more than most people see in a year. Worse still, likely it’s the Covid restrictions that have impacted him, like so many others out there.

We’ve since had a broad selection of health check ups, making sure there wasn’t anything else exacerbating the dementia. When they came back clear, we had to acknowledge that this is just the disease. There wasn’t really anything that could be done, except to make sure he lived his life as best as was possible, during his remaining time here.

But tonight, for the first time in a long time, the tears streaming down my face are happy and grateful ones. Having come to accept Dad’s continued inability to identify me, I was not prepared. We’re in the the middle of conversation and suddenly:

My daughter’s on the phone“, he tells one of his care team, who happen to be visiting when I called.

I couldn’t believe what I was hearing. Shortly after he started called me “Darling” – his previously long-term pet name and said he was looking forward to seeing me in a few days. Then, the big one:

Speak soon, I love you lots“, he says as we say goodbye.

Cue hysterical tears as soon as I’ve put the phone down.

I cannot tell you how many months I’ve waited to hear those words, never really expecting to hear them again.

According to Alzheimer’s Society, someone in the later stages of dementia “may experience moments of lucidity (being aware of their situation) and some of their abilities may return temporarily.”

If this is all we get, I’m eternally grateful. I don’t think I’ve ever been so grateful for anything in my life. Every day you have to take time to appreciate the little things but this is more than I could have dreamed of at this stage.

I will hold onto this moment forever.

To me, this moment is everything.

This moment is magic.

Diary: 27th August 2020 – Resilience

The things I wish I’d known (and truly understood) at the start of this journey could fill a book by itself. It’s a constant education in understanding, compassion, adaptability and most importantly, resilience.

Three hours ago, if you’d seen me sat in the front of my car as the rain poured down (yes, really), crying and shaking uncontrollably, you would probably think I had hit breaking point. I’d just left Dad after what should have been just a nice casual lunch to realise that the Dementia has reached a point where a significant portion of his identity (and mine) – has been eradicated by this disease.

Recently, more often than not, he didn’t recognise me. It was heartbreaking at first. It’s always just been us but I understood his form of Dementia made visual identification more difficult and knew this was a possibility at some point. So, I adapted. I accepted that sometimes (more often than not lately…) he would talk to me about this other person – “my daughter” – and tell me some of the things we did together and talked about. He knows that I (the person sat across the table) am important to him and he could trust me but just couldn’t connect the two.

Then today happened – and it blindsided me.

We were discussing old memories of his time in the RAF over lunch and how he married my mother. Then there was a moment of confusion in his eyes and he couldn’t get the words out. I told him to take a minute, “the words will come“, I told him, almost on autopilot .

Dad takes 10 or 15 seconds and states: “I think there was a child from that woman.”

Your ex wife?“, I ask.

Yes, her“, Dad replies.

Yes, you had a daughter together.”

Then, the sucker punch:

Everyone keeps telling me I have a daughter but I never had kids….I had 5 siblings, that was enough.“, he says, chuckling to himself.

I don’t know how I held my tongue or held myself together in that moment. I knew better than to correct him. It’s too distressing. He’s in later stages of the disease now and living his reality based on how the brain has put remaining memories together in that moment.

But there I was, the only child to a single parent who I’ve been side by side with for the last three years, told to my face that I no longer exist in their memories. That’s the most gut wrenching thing; 30 years has just been eradicated for him by this f-king disease.

I managed to push the emotions all the way down, pay the bill and get back in the car with him. I put some 80s classics on – which he loves – and he tapped his foot and sang along every now and then. I focused on the road and getting him home. I faked my cheeriness throughout that entire journey.

By the time I’d dropped him off, I knew I had another 1 hour + in the car to get back to mine. So I went to get coffee and when I got back in the car. That’s when it hit: The pain. The tidal wave of emotions;

Real, all-consuming, heart-shattering grief.

I was hysterical. Listening to Jeff Buckley’s “Hallelujah” and taking pulls on multiple cigarettes between streams of tears. There I was, in the middle of a Sainsbury’s car park, wanting to curl up and disappear as the father I knew has been taken from me.

But I had to get home. Other than sleeping in my car, there wasnt another option. A few very deep breaths, a change in music (thank you noughties pop) and yes, another cigarette.. and there it was for me again: my resilience.

The word “Resilience” is something I find is thrown around a lot without true understanding of its meaning. However, when caring for someone, it’s something I believe you must learn and find in yourself. It’s not a ‘would like to have’ but a necessity. When caring for someone with Dementia, in my experience, it’s something you have to dig deep down and, particularly in later stages, be constantly ready to utilise.

Mind, the UK’s leading mental health charity states: “Resilience is not just your ability to bounce back, but also your capacity to adapt in the face of challenging circumstances, whilst maintaining a stable mental wellbeing. Resilience isn’t a personality trait – it’s something that we can all take steps to achieve.

Resilience doesn’t mean you don’t feel things deeply. That you aren’t hurting. It means that even in those darkest moments, you find your own strength to move forward. It might hurt like holy hell but it’s not over. I believe that you then must balance that strength – which can be frankly, exhausting – with self care and personal joys, however small or silly.

Tonight for me it’s likely to be a bottle of red, candles, binge watching old episodes of Homeland and demolishing a box of Guylian’s chocolates.

Whatever it is, take those minutes for yourself. If it makes you happy, even momentarily, it will make you stronger.

Diary: 27th April 2018

I’ve noticed myself saying “remember?” significantly more to Dad in the last few weeks and months;

remember that …

do you remember when..?

we spoke about this, don’t you remember” etc… 

I need to stop this. Immediately.

I’m not even saying it consciously or with stress , malice or frustration.. it’s completely with love and trying to understand and drive conversations forward. His memory is getting worse; short term details will be often be forever lost. 

Asking if he remembers, is like asking a deaf person if they heard what someone said. It’s cruel, confusing and insensitive. No, he doesn’t remember – idiot (me).

Sounds stupid but maybe I’ve just wanted him to remember but it’s not fair anymore. 
Solutions are needed. iPad is one, notes are others… I guess that’s a step forward. But what else could help?