Young-onset Alzheimer's: A 10-year journey
Alzheimer's might rob you of memory, but it can't take away how you choose to face it as a family
This article was originally written for Singapore Alzheimer’s charity Project We Forgot in 2017. This version has been updated with more recent events as we have progressed with managing my dad’s illness. As we approach the ten-year anniversary of his first diagnosis of Young-onset Alzheimer’s disease, this article has been updated and extended to reflect more recent events.
Ten years ago in 2012, my dad’s Alzheimer’s diagnosis came to me not as some monumental shock or sense of overwhelming tragedy, but as something to which I had no idea how to react. It had simply never occurred to me that something like this could happen in life; no family member I knew had ever suffered from such a condition. What was it that I had just been told? What did it mean? I had plenty of questions, but the most confusing aspect of my father’s diagnosis was the gaping chasm between what I was supposed to feel, and what I did feel.
What I was supposed to feel, and how I actually felt
There are many ways of reacting to such news and there are many ways society tells you how to react and what you’re supposed to feel. The archetypal response often involves tears and outpouring of grief, and that works for many people. For me, the closest description to my reaction was bewilderment and disbelief. There were no tears at first, it was mostly denial and guilt. I felt guilty that I didn’t feel anything more; I was fairly numb and my first instinct was to just carry on as normal and ignore it. Of course I knew what Alzheimer’s was; I knew it was a terminal illness and that there was no cure. This, I said to myself, was something that happened to other families not mine. I carried on as if I’d been told nothing. It took me a long time to accept that this was OK, that my reaction to this news was just as valid and acceptable as any other. It was part of the process of rationalising the situation in which my family found itself. I’d snap out of it eventually but until then I just needed time to think. The few hundred miles distance between my parents and I meant that I wasn’t really faced with the reality of the situation immediately and I didn’t truly understand the gravity of the illness.
The first time the situation really hit me was when my parents visited my apartment for a week. My dad had spent decades working as a chef in the British Army and also for a private girls’ school. He was amazing at what he did, even baking a Christmas cake for the Queen (a story he often told). There was no doubt he knew his way around a kitchen. I’d noticed that he’d been acting oddly for a few days, but I put that down to the fact that both my mum and dad were tired and they were visiting somewhere new. I did notice that my dad’s ability to recall information wasn’t great; it was as though everything was just on the tip of his tongue. We all experience that from time to time, where you’re aware that you know something but can’t quite recall it specifically. My dad was slightly different; this problem was constant. He needed more prompting than usual but as soon as you mentioned what he needed to remember, it was like unblocking a pipe. The information came gushing through again and it was all OK. It was all OK until he offered to cook dinner.
The clarity of this moment is something that I will take with me throughout the rest of my life. Ironically, I remember everything about it to the finest detail like a photo stuck inside my head. The moment he stepped over to my cooker and couldn’t work out how to use it. I was about to step over to help him when my mum quietly pulled me back and asked me to just observe; it was only for a minute but it felt like ten. My dad just stood there looking at the cooker, twisting some of the dials, lifting the hob plates to look under them. He couldn’t work out how to use it at all. A man whose life had been spent in every type of kitchen imaginable from the comforts of home to the middle of the Saudi desert couldn’t work out how to use my simple cooker. It was then that I realised how serious this illness was, what it meant for him and that it wasn’t something that was going to just go away. It had already claimed part of his life that many of us had taken for granted. This was, for me, a turning point in my realisation and understanding of Alzheimer’s and its consequences. It was also the first moment that I felt I understood the road ahead.
The feeling of helplessness
Life changes when a relative is diagnosed with an illness but not in the way many think. You learn a lot about your own family that you never knew before. Every family has areas within them that are private but when one is diagnosed with an illness there is a choice: take the burden alone or open it up to others. The thing I was least prepared for was dealing with aspects of family life that had simply been none of my business before: finances, legal matters, wills and personal medical issues. It can be a lot to take in. In many cultures and especially in Britain, finances are deeply private. The idea of being involved with those of my parents was scary; I’d never had any interest in knowing their private business like this but now I had no choice. It took a lot of adjustment to go from discussing how one’s day was to talking about having ‘Power of Attorney’ or talking about my parents’ pensions. Again, I had to just go along with it and learn as I went. I now held the reins of the family along with my Mum; I was totally unprepared for this at first. Who am I, as a son, to decide what is best for one of my parents? They raised me, they looked after me for my whole life and made decisions that led me to where I am today. It felt surreal for this role to be reversed so suddenly. Here I was making decisions that not only affected my life, but those of my parents.
As for my Mum, I doubt I’ll ever understand how the diagnosis affected her. Being a nurse, I imagine she’s faced with the prospect of telling loved ones bad news regularly but to be on the receiving end of it must still be unimaginable. I’ve always thought there’s an element of protection that goes into the news she tells me. Any parent would want to shield their child from pain and harm, it’s only natural and I expected it. One thing I’ve had to learn to live with his finding out information about my dad from other sources too. It’s difficult enough for my mum to look after him and still work as a nurse, let alone having to relive every moment by telling me about it. I’ve discovered that the best thing I can do is just be there when I’m needed. The less my mum has to worry about me and what I’m doing the better so long as I can help when I’m asked to. It’s difficult; it often feels like I’m walking a tightrope between making sure my own life is in order and being there for my mum as best I can. Everybody has to try to carry on as well as dealing with my dad’s illness and when you’re learning on the way, it can be extremely challenging to work out what to do. After all, bills still need to be paid and we all still need to eat with a roof over our heads. Beyond life’s necessities, we all still need to find time for fun and relaxation as well.
Five years after my Dad was first diagnosed - and when I first wrote this article - the learning curve flattened out (albeit temporarily, which I didn’t appreciate at the time). There were still challenges to everyday life and questions that were difficult to answer. Sometimes when people asked me what my dad does for a living, I didn’t know whether to say he is a chef or he was a chef. Simple grammar becomes a debate as to whether you’ve given up or not. We’ve had some funny moments too. Simple things, such as when my dad offered to make a cup of tea (multiple times) and then eventually arrives with a cup of coffee, or nothing at all, the absurdity can make you both laugh together. My mum’s closest friends have helped her so much too and I’ve been truly amazed how many people have come together to help out. You really do find out your closest friends in times of difficulty.
I tried not to think about what was to come too much; whilst it felt sensible to plan ahead I felt that there really was no point in dwelling too much about the inevitable. Enjoying life’s moments became more of a priority for the family and it was amazing how aspects of life that used to worry became insignificant. I felt that I had gained a better sense of perspective as we all knew how the journey will end, but the way we got there was up to us. Looking back now this seems somewhat naive, as the years after 2017 - as we approach the 10-year anniversary of my dad’s diagnosis - were more turbulent than ever.
The journey into care
Since I originally wrote this article in 2017 a lot has changed. It’s likely we became a little complacent, as my mum and I had adjusted to the facts of what was now everyday life. My dad needed extra care, but we could still do fun things and my mum appeared to be coping; his medication had slowed down the progression of the disease. We obviously knew the gravity of the situation, but we thought that we had all we needed to manage. We assumed that when the time came to put my dad into care it would be a relatively straightforward process. I remember thinking “surely people understand the nature of this disease; they know he’s not getting any better and they’ll help us take care of him”. Unfortunately this has proven not to be the case. Just because someone is terminally ill doesn’t mean they’ll get the care they need without a fight; just because we understand his illness doesn’t mean others will too, or will even care to try.
After nine years, the day eventually came where my mum realised she wasn’t meeting my dad’s needs at home and was becoming increasingly more exhausted trying. Furthermore, the effects of the medication that had slowed the progression of his Alzheimer’s had started to wane. After a lot of guilt-ridden talking we eventually decided to find a care home for my dad. I felt a bit rotten at this point, because in response to my mum’s self-doubt about the decision I responded by being as objective as I could to convince her it was the right decision. I felt as though I was being cold-hearted, trying to separate my emotion from the need to make the right decision for my dad. However, my own self-doubts were put into perspective when the applications for funding started.
The quagmire of care funding
Even as a professional, my mum reached the point where a care home was the only viable solution for the wellbeing of my dad. As a relatively young sufferer of advanced Alzheimer’s at the age of 62, he still had much of his physical strength that elderly sufferers would not have, and despite the significant problems his dementia caused him cognitively, his physical fitness was relatively good. Whilst he had a primary care need (he needed 24-hour support for all aspects of his life), he was still mobile. We found that this is an unusual situation for many care homes. Many, if not all, are not equipped or experienced in dealing with someone with Young-onset Dementia. The expectation, or how I saw it, was that dementia patients should just sit and vegetate all day. Indeed when we visited homes for my dad this was exactly what I saw. My dad couldn’t, and wouldn’t put up with sitting in a chair all day even with his illness.
Funding was another challenge we faced, and one in which we found ourselves totally unprepared for at first. Because of my dad’s circumstances, we were initially successful in applying for Continuing Healthcare (CHC) funding for all of his care needs, and his care needs were transferred from the local council’s Social Services team to CHC . You’d think that this was a good outcome, and that our problems would appear to have been solved, however this has caused a number of further ongoing problems. The Clinical Commissioning Group (CCG) that approved my dad’s funding for care then refused to allow him to go into many of the homes that were suitable for someone like my dad, even going as far as to say that he should stay at home and have 24-hour carers stay with him and my mum (oddly, this option is a fair bit more expensive than staying in a care home). The nearest care home that the CCG offered that was not in special measures was over 60 miles away in Catterick. As a dementia nurse, my mum knows the homes that have poor service ratings and was very keen that my dad didn’t go into one but a 120-mile round trip for a visit just seemed absurd.
The burden my mum had on her shoulders was particularly heavy, but as is often the case with my mum she bore it without grumbling and with a well-practised stoicism. This sometimes means many of us are unaware of the issues that she is facing, which is a frequent challenge with those who are caring for loved ones, especially those of us who are conditioned to have the typically British stiff upper lip. Nevertheless, after a lot of fighting my mum managed to find a suitable home, and put forward a strong (and ultimately convincing) argument that it was where my dad should go. The process was not quick, nor was it easy. After several interviews and assessments, and a number of letters to MPs and local councillors (none of whom responded), my dad found his new home where he remains to this day.
From one home to another
My dad’s time at the care home has been an emotional rollercoaster, but he seems to have settled into his new routine. Placing him in his new home was probably just as hard on my mum, who suffered feelings of guilt and remorse, as it was on my dad. My mum visits him almost every day, and I get up from London a few times a month for a long weekend where I get to see him. He’s safe, looked after, and in the right place although this took a while to admit and understand for both of us, particularly my mum. You get used to the visits, which at first were surreal. I still feel strange seeing a relatively young man in a care home; my dad stands out compared to the other residents because of his age (there are people who work there that are older than he is). You also learn to interact with other dementia patients in the home, including Alan who merely walks around saying a cheery thank you to everyone, and whose face lights up with joy when you wave to him. I can’t fault the care nor the dedication of the staff at the home; they’ve welcomed my dad with open arms and have been exemplary throughout, which is a great relief to my mum and I.
Money: the perennial problem
What we have experienced over the ten years my dad has been suffering with Alzheimer’s is a social care system that is fractured, over-worked and poorly funded. Like much of the UK’s health system it relies heavily on the goodwill of staff to keep functioning, which is not in infinite supply and could soon run out. We’ve found that it’s not just the availability of money, but how that money is used and managed that is the problem, and the inability of many managerial staff to see patients as people rather than numbers on a balance sheet. The constant desire to keep patients ‘off the books’ and shift their funding elsewhere creates a constant atmosphere of tension and worry that doesn’t need to be there. I realise that budgetary pressures are the perennial problem of government departments, but there must be a better way to manage the funds we have so that it goes towards the best interests of patients more effectively. My dad is just one example, and the people we’ve spoken to and met on the way - some of whom have been incredibly helpful and others not so much - suggests that this is a widespread problem and one that is probably outside the scope of this article for now. Things need to change; we’ve been lucky in that through sheer bloody mindedness we’ve overcome the challenges we’ve faced to find a safe place for my dad’s final years. However there are many out there - some that should be in a care homes themselves - who are looking after very ill loved ones with no support whatsoever. We need to evolve our thinking and start dealing with the social care crisis before it turns into a tragedy.
All photos © 2022 Keir Gravil unless otherwise stated in the caption.