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 – 22nd December 2020: I’m Sorry, Dad.

For the last few weeks, my head has been constantly spinning; the progression of Dad’s illness has taken a catastrophic turn. I’m exhausted, constantly concerned, and above all else, heartbroken to see what this disease has done to my determined and courageous father.

On Friday evening, following a serious incident, the decision was made by his medical team and (reluctantly) myself as Power of Attorney, that he was no longer safe and his care package needed to be reviewed urgently.

The consequence of that is that today – just three days before Christmas and after the worst year to date – I have the heart-wrenching responsibility of packing a bag and driving Dad to a full-time care home, where he will stay.

To make it worse, because of Covid and Tier 4 restrictions, I don’t even know when I’ll be able to see him again; a fact I’ve purposefully omitted from discussions with Dad. Perhaps selfishly, because the magnitude of that fact, is just too much for me to take.

Deep down, as tears pour down my face, I know that this is the right decision, and the level of care and support the home will provide is beyond anything I or his current team could. More than anything, I hope he will be happy there.

But beneath the rational “positives”, I feel hurt and guilt on a new level and I just want to tell Dad that I love him and how sorry I am;

I’m sorry that I’ve had to lie to you and tell you it’s a ‘holiday’. I’m sorry I’ve had to take this choice away from you. I’m sorry I couldn’t get social services to move faster and support you to live independently for longer. I’m sorry we don’t get to have this final Christmas together. I’m sorry I don’t know when I’ll next see you.

I’m sorry I wasn’t stronger.

But I will be strong for you today. I owe you that.

Diary: 12th December 2020 – Crisis In Caring

Do you ever wake up and think, can we just get through one day, without another crisis? I’ve felt this more often than not lately, but this morning I was so damn angry and seemingly unable to shake the feeling.

This week I started a new job after months of unemployment. A job and company I’m truly excited about. Rediscovering that alien (but sorely missed) feeling of waking up in the morning with not just a purpose, but with real passion. However, within four hours of starting this exciting new chapter, my reality came crashing down when I received a phone call from Dad’s building manager; there’s a crisis.

Two days later, it’s a call from Dad’s pharmacy; there’s another problem. The (very) rude woman on the phone is offloading at me, saying the surgery is to blame and she’s “sick of it…”. This leads to phone calls back and forth trying to mediate the situation. It’s relentless, isn’t it?

Then cut to this morning; after an intense first week at work, all I want is a Saturday morning lie-in and a bit of rest. At 8:15 am my phone rings and it’s Dad’s care team asking why there’s no medication left. “Because no one told me it was running low“, I respond. “Your team is supposed to give me 3-4 days notice!”. 

Another crisis“, I think, and the GP isn’t even open…[add a series of expletives and rants here]. So I begin a series of phone calls to the memory clinic, NHS 111, and local pharmacies trying to get an emergency supply. Luckily, I had already planned to drive to see Dad today but if I hadn’t, I would have had no choice but to drive the 40 miles each way to make sure it was resolved because guess what, there’s no one else to sort it.

And there it was: the resentment. The frustration. The anger. Of course, this is all going through your head whilst in autopilot, knowing you have no choice but just to get on with it, so those feelings exacerbate exponentially. As it turns out, a lovely pharmacist helped us and we were able to resolve it quite quickly once I got there. So off we went to our planned lunch date.

Not long after sitting down, Dad started getting a bit emotional and asking “Why do you do all these things for me? I don’t understand.

Well, that’s what daughters are here for.“, I said without thinking.

I then immediately recognised the look in his eyes; perplexed emptiness. “What do you mean? How do you know this?” he continues. “Are you sure? Did someone tell you this?“.

Shit. He has no idea what I’m talking about and to make it worse, I can’t take it back. I didn’t know what to say except: “Yes – I grew up with you“. The next 15 minutes felt like an integration; “Did we go to school together… Had I met his mum and dad?“.

Then I realise; I don’t think he even knows what a “daughter” is anymore. So, there we are, in the middle of another “crisis” but this time, there’s nothing to do and no one to call. I just have to take it, accept it, and pretend I haven’t just been crushed all over again.

On the way home, I realised that’s what makes being a carer of someone living with late(r) stage dementia so much harder; the stress, the long days, and seemly endless challenges you fight through when, at the end of it, I can’t even have a true relationship (or conversation) with *MY* Dad. 

He’s still Dad, sure; his humour is still very much on point. But our relationship has completely changed now and this year, for the first time, I know we won’t even be able to have Christmas as Father and Daughter.

I wish I could end this with some level of positivity but right now, I’m just not there. There’s a very real pain in knowing my role as Daughter has now been fully replaced as “Carer” and perhaps ‘Friend’.

As someone who would religiously go to My Dad for his advice when in a crisis, I’m missing him terribly today.

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: 1st May 2018 – What is PCA?!

What a week. This is not the update I wanted to write. I wish I’d written one on Sunday or yesterday before I got home. I had started to really process everything and felt that I had finally reached some sort of positive acceptance. It took a few days and a day off work to get there but I was actually “ok”.

Unfortunately, we’ve been unlucky and another curve ball came in out of nowhere, by way of the official doctors letter when I got home from work last night. The official diagnosis, sat there staring at me;

Dementia of Alzheimer’s Type, early onset (Likely Posterior Cortical Atrophy Variant) 

Reading that was bewildering; I’d never heard of Posterior Cortical Atrophy. The doctor didn’t mention anything about it in the meeting?! Google can be a horrible thing in these situations, but quickly answered my question, “What is Posterior Cortical Atrophy?”:

“Posterior cortical atrophy (PCA) is a rare form of Dementia that usually begins by affecting a person’s vision…”Many people diagnosed with PCA will often be registered as blind during later stages of the disease.”

What?!? Blind?!?

I cried for the best part of an hour.

Atypical Alzheimers is what we were told. And yes, it’s factually accurate but the candid details of what this meant in real life terms had never been disclosed. I was furious. One of the key aspects of PCA, I discovered (thanks, Google), is its brutal deterioration of vision and spacial awareness (an area that had in fact been highlighted as problematic for Dad). This is not caused by the eyes themselves but in fact how messages are relayed by the brain.

For me, it was like a light bulb going off; the issues with the iPad, the falls… it’s not his glasses that are the problem – something I’ve been consistently having a go about, for months on end – it’s this f-king disease causing him further pain and anguish.

My father is too intelligent for his own good sometimes. He’s found ways to cover up his difficulties as far as is possible, just short of lying about them. He’s a proud man and not one to want to cause any unnecessary commotion. But the words “I can’t see what you’re talking about” from a few weeks before, hauntingly rang through my ears in that moment. 

I’m grateful to a very dear friend who let me cry and shout down the phone, the majority of which were incoherent rants. Honest and true friendship right there. I was so angry. So heartbroken. So unprepared for another swipe at his dignity.

It was too late in the evening to speak to the doctor but I called first thing this morning; I couldn’t wait. I needed answers, now. She profusely apologised for not going into specific detail regarding the specific etiology / cause of his “atypical Alzheimers” but that she had focused our time on treatment options (however frugal they might be…) and believed vision didn’t appear to be such a key problematic area for him.

After I explained how much I had chastised him regarding the need to go to opticians and a number of specific incidents, we both realised how much had gone a miss throughout the testing phase (even despite the lengthily review process).

We agreed, he’s far too smart, my Dad. He still manages to out-smart us all. His cunning and impressive tactics and have covered up just how far the disease has progressed and sadly, may even mean the stage at which he’s been diagnosed at is inaccurate. 

Following our lengthy discussion, the Doctor has now pointed me in the direction of a PCA support group and I will be looking to discover as much as I can about this little known Dementia and how we can fight it together for as long as is possible. 

Note: For more information on PCA, other Rare Dementias and support available, please reach out to RDS here: https://www.raredementiasupport.org/

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?

Diary: 25th April 2018

It took until this morning whilst brushing my teeth for those tears to arrive – I mean what the hell?! Brushing my teeth!? 

I have no idea why or what possible trigger set that off. It seemed to come from nowhere and continue on and off over the next few hours including at work in front of co-workers… I feel stupid. What has changed?! I knew this was coming in one form or another; it’s not shocking or unexpected.

A few people knew the appointment was yesterday and have kindly checked in to see how it went; saying he has “Young Onset Atypical Alzheimer’s” brings an interesting variety of responses but with one common theme; no one really knows what to say. What do you say to that? I’m not even sure what my response would be if someone said that to me now. “I know what you’re going through” would seem feasible and also predominantly untrue – what I’m learning is that everyone’s relationship to, experience, symptoms and understanding of Dementia is different. 

No one believed me when I said something was wrong.

It’s probably just stress” 

Maybe he just has a vitamin deficiency

When I mentioned Dementia was being explored, I even had:  “I very much doubt it’s anything like that, he’s too young”.  Words I will never forget. 

From family to Dad’s own GP, their lack of understanding delayed my fathers treatment. This perhaps is the most upsetting part of this story; had knowledge on the subject been more freely understood, we could have possibly delayed the crushing reality that (at the age of 61) my fathers ability to follow or contribute to conversations has already reduced predominately to pre-rehearsed platitudes. 
It’s taken 9 months to get here. 9 months from the first GP appointment.

Since then we’ve had:

  • Vitamin and blood tests (September)
  • Return GP appointment to confirm “everything’s fine” (October) 
  • First appointment with the Memory Clinic including an hour and half of initial testing  (December) 
  • Two follow ups with Memory clinic for 2.5 hours of neuropsychometric testing (January)
  • MRI (January) 
  • Initial diagnosis meet at Memory clinic (March), now referred to PET Scan
  • PET Scan (March)
  • Final diagnosis appointment April 24th
  • Treatment due to start May 1st

This is just too slow for a disease that progresses as the rate it does and only when the resulting diagnosis has been delivered, can potential treatment options even begin. 

Diary: 24th April 2018

D day, except the D here stands for the one that I hate. 

Finally, almost 9 months since the first GP appointment we have a diagnosis;

Atypical Young Onset Alzheimer’s disease.

A string of words with devastating consequences. 

The “atypical” aspect wasn’t something I had thought of or had fully considered. This means the development of the disease doesn’t begin the way the majority do, with the “reduction” of the hippocampus (the part that stores memories), it can start elsewhere. Note: Biology was never my forté, so it still feels weird knowing the terminology.

We’re told that although only 5% of over 65’s diagnosed with Dementia present in this way, in Young Onset Dementia (those under 65) it is more than two thirds (!) which I wasn’t previously aware of (learn something new every day and all that) but no wonder it’s so bloody impossible to diagnose. 

I haven’t cried today. I’m not even sure why. I feel the need to cry but there’s nothing.
I guess there’s a strange sense of relief. Of the two possible expected outcomes, we’re told this was the better one. There are possible treat options for Alzheimer’s, with the goal to potentially slow it down. Nothings for certain – apart from it’s a terminal progressive disease, that’s the fact. We just need to take it step by step now and enjoy what we have while we have it. 

I did surprise Dad with an iPad today. He’s never had one before and it gave me so much joy. Despite concerns over his ability to engage with new technology, his disconnection from the world could not continue. I had to try. I set him up with a brand new Apple ID and showed him how with two clicks my (pre saved) contact card would allow him to video call me and show me what’s around him too..
Communication is becoming more and more difficult and hopefully this can provide an opportunity to show things vs putting himself under further stress and inevitably exasperating the issue.

As he grasps to hold onto his independence for as long as possible (stubborn as ever, like his daughter!), I’m going to damn well do everything I can to help him achieve that.

Diary: 23rd April 2018

The appointments been moved up; it’s tomorrow and I’m dreading it in some ways but in others, we just need to know.

They’ve said they *think* it’s FTD or Alzheimer’s due to his young age and primary issues with communication. Each (and all forms of Dementia) come with their own painful paths but our doctor even said “we hope [its Alzheimer’s]” as FTD has no treatment options and would progress much faster.. I guess we shall see what diagnosis we walk out with.

But I spoke to my Dad today and I can hear (and feel) how quickly his condition is progressing. Repeating questions, no knowledge of previous conversation, regular incorrect use of words and phrases and then the announcement; he’s just purchased himself a new alarm clock, that he has spent so much time trying to set up, to no avail. I can tell he’s upset, something so simple and that you can’t even blame on the complications of modern technology. He says the “paperwork is too small for him to read”. I don’t understand why there’s paperwork… I take a second and realise what he means to say is that the buttons, to adjust the time etc, are too small;

Let me walk you through this:

  • Paperwork = provides instructions and directions on how to set up things
  • Buttons (in this context) = provide a way to adjust settings and set up said alarm clock 

This kind of decoding of conversation is becoming more common than not. 
My very smart father, knows what he means – he’s not any less intelligent – he just doesn’t necessarily have all the tools to explain it in his previously impressive vocabulary.

This is a very sad but unfortunately – I’m coming to learn – a common fact of life for those with Dementia and one that I am slowly adjusting to. 

I just try not to forget that he’s still the same – he’s still in there – something I try to remind him every day. I will remind him tomorrow, no matter what. 

Diary: 10th April 2018

At long last, Dad’s “final” diagnosis appointment is confirmed for May 4th. At which point, we will hopefully understand more about the specifics of his condition and what that means for the future.

This will be almost 8 months since his first doctors appointment and close to 2.5 years that I’ve been saying and screaming that somethings wrong so.. let’s see what cards we are dealt with and we’ll have to just go from there.