I hope I'm old before I die: Type One Diabetes in older age

 

“I hope I’m old before I die” sang Robbie Williams in 1997, in a clever re-working of the iconic line from the Who’s “My Generation” - “hope I die before I get old”

To compare those two lines, written just over thirty years apart, is in itself is enough to provoke thoughts about changing attitudes since the sixties:

Pete Townsend’s words from 1965 reflect the pervading sense in the sixties that to be young was everything, and that the older generation had nothing more to offer than outdated, suffocating values and attitudes which were being swept away by the tide of youth culture. I am just about old enough to have sensed, understood and identified with that attitude at the time, which still makes me feel a little guilty: I don’t think that in my own childhood and teens I valued and respected my parents’ and grandparents’ generations as much as I should have. Being born and brought up on constant reminiscences about two world wars fostered in those of us born in the 50s and 60s a sense that the first half of the twentieth century had been something of a failure, best forgotten. In later decades, the so-called generation gap, so apparent in the 60s, has become far less of a thing - look at the universal affection from all age groups for the likes of Captain Sir Tom Moore. In more general terms, it is certainly true that observation of Remembrance in November has grown in importance and reach since my childhood, despite the fact that the World Wars have receded into the memories of very few.

By the time of Robbie Williams’ words from 1997, and in the years since, older age has become a desirable goal as much as a fear, and old people somehow don’t seem old in the same way that they did when I was young. The likes of the Stones, Springsteen, the surviving Beatles, Sir Tom Jones and Dolly Parton are still musically active and admired by all generations, and national treasures like Sir David Attenborough and Dame Judi Dench are idolised and revered by even the very young, not despite but because of their age: it is certainly no longer a young person’s world. All of those mentioned are way beyond pensionable age, yet when I was a child, pensioners were men in flat caps and women with blue rinses who sat on park benches, went for a nap in the afternoon and complained about “long-haired layabouts” and “loud and vulgar pop music”. No wonder Pete Townsend wanted none of it - although at 75, it looks as if he didn’t get his wish!

So as I grow older, I still feel that I have much to look forward to, and my appetite for and anticipation of what the future holds feels in many ways the same that I felt when I was a teenager looking forward to the adult world. I like being retired: it feels like a reward, a well-deserved period of freedom and choice, after so many years of subservience to the demands and stresses of the workplace. I am, like many of my generation, more than a little irked that the Coronavirus Pandemic has stolen over a year of my remaining years of good health and active life, but I am optimistic that I have enough years of fun left before I end up sitting in a care home watching TV all day.

And then there’s diabetes….

I live with Type One Diabetes. It’s a condition which could impair my ability to enjoy life, and even foreshorten it if I am unlucky. So I have good reason to hope I’m old before I die! And at 63, I’m doing alright - so far.

Those of us who live with Type One get mildly irritated (and some get angry) when muggles living without the condition misrepresent diabetes in one way or another. For those of us living with Type One, generalisations in the media about “diabetes” without mentioning type are a familiar irritant, and well-meaning excitement from others about cures and reversals that they have read about induces mild amusement rather than resentment in me.

But another common misconception about Type One is more annoying for the likes of me (diagnosed at 40, alive and well at 63): the perception of Type One as a disease of the young.

Wrong on two counts:

• Firstly, young people get it, but they don’t die of it, nor can they be cured, so they get old, just like anyone else.

• Secondly, you can develop Type One at any age.

If you are lucky and prudent, you will live to a ripe old age with Type One Diabetes, whatever your age at diagnosis. Look at these figures recently published for people living with Type One in the UK:-

So if we regard 40 as the approximate midpoint of a full life expectancy, then it’s not far off a 50/50 split: almost half of those living with Type One diabetes are over 40, and over 13% of them are over 70. Type One is far from being a young person’s condition, and as diabetes care, monitoring and insulin regulation improve, there is every reason to believe that the number of “Type One oldies” will grow - I certainly hope so. The very success of treatment and care for Type One diabetes since the discovery of insulin therapy in 1922 inevitably leads to there being a growing cohort of older people with Type One. The discredited epithet “juvenile” for Type One still persists enough to sometimes gives the impression that it is a young peoples’ condition, which it of course isn’t.

The number of older people living with Diabetes UK medals for milestones of living with diabetes is already remarkable: recipients of the Alan Nabarro Medal (50 years), the Robert Lawrence Medal (60 years), the John Macleod Medal (70 years), and the HG Wells Medal (80 years) are living proof that diabetes is no barrier to a long, healthy and fulfilling life, and it is my personal pleasure and privilege to count medallists Lis Warren and Pete Davies in particular as great friends from the diabetes community. DUK medallists recently held their first get-together, sadly only on Zoom, but a personal triumph for organiser Lis Warren, who does so much to promote the welfare of people of ALL ages living with ALL types of diabetes. 

Diabetes UK Medallists at their recent Zoom get-together

It is a small personal ambition of mine to reach the milestone of a Nabarro Medal, despite my relatively late start: I’ll have to make it to age 90 to do so, but why not? I cannot help but wonder what it will be like to live with Type One at an advanced age. I accept that I am too old to have any prospect of being cured of Type One, and I also accept that whilst the health of older people is much better than it was even in the recent past, I will over the years that I have left become weaker, frailer, more forgetful, less capable and so more dependent upon others. I think that the particular needs of those living with Type One in older age is an area which will require greater attention and investment as their number increases.

Another aspect of this issue is more subtle: perhaps consideration should be given to the portrayal of people with Type One in material about the condition - leaflets, websites, magazines and the like. Pictures of people with Type One, and of things like insulin pumps, CGMs, flash monitors are overwhelmingly of children or of bright, attractive young people. Try typing "Type One Diabetes" into an image search and you will not see many older people. The subconscious impression is propagated that this is a disease of the young, or that the devices and therapies used to treat it are the province of young people. This is, perhaps, the case at present, but as the techie, looping generation ages, and things like CGM and flash become the norm rather than the exception, so we should surely see these devices on bodies of all shapes, sizes and - crucially - ages. Access to pumps, flash, CGMs, closed loops and other dia-technology yet to be discovered should not be regarded as “just for younger PWD” and become more of a priority for those of more advanced years.

So yes, I do indeed hope I’m old before I die and indeed by some measures I am already fulfilling that wish. I hope that my older years with Type One Diabetes will be enjoyable, healthy and active. 

But to borrow another line from Robbie's song, I don’t think I’ll ever live to see the day the Pope gets high - unless, of course, he develops Type One Diabetes at the age of 84. Now that would be a story....

Reflections of My Life: Growing old with Type One Diabetes

Reflections of My Life. This sounds a bit personal and heavy, but it doesn’t signify any particular change of mind-set.

It’s just that I’ve perhaps had more time for thinking in recent months, and together with a few unrelated events and changes in my life, it’s led to a blog post forming in my mind. As always, I’ve given it a title from a song, and this one is a real favourite of mine. It’s a track by Marmalade, a somewhat under-rated Scottish band who spanned the late 60s into early 70s with a series of songs that saw them grow from beginnings in fairly bland 60s “pop” into a versatile, musically and lyrically literate outfit. This one is a real gem from early 1970, a song as wistfully reflective as the title suggests.

So what’s this post all about? Well, I guess it’s about growing old, and in particular growing old with diabetes. And why now?

Well, I’ve been doing a lot of digging recently.

There’s been a lot of literal digging, as we have just moved into a new home with a very large, undeveloped garden. I’ve been out in all weathers, patiently and methodically creating two long, undulating borders along the sides of what was a rectangular lawn. It’s the sort of task I love. Easily defined, constructive and with a visible and measurable outcome, it gives me fresh air, exercise, stable blood sugar and lots of thinking time. I have also been delighted by the extent to which people on twitter have enjoyed following the progress of my work. Simple pleasures.

My Growing Border

Then there’s been some metaphorical digging as I make similarly slow but equally steady and rewarding progress indoors, uncovering the full extent of my family, past and present. I’ve been building a family tree on Ancestry for several years now, tracing back my own and my wife’s forebears, but a particular meet-up with cousins from two generations on my father’s side has led me to propose and organise a gathering to celebrate the centenary of my paternal grandparents’ wedding, in April 2019. This has re-connected me with 8 first cousins with whom I had been in minimal contact, and to hear about their lives and their families has been a great pleasure and also a reminder that we are all growing older together. I am, with the help of my cousins, planning quite a party.

So I was thinking about all this whilst digging away at my lawn, when at some point in recent days I saw this post from the wonderful @LisWarren, one of the many great friends that I’ve made in recent years though the online diabetes community:

With her 50+ years of living with Type One and tireless advocacy work, Lis is, along with @PeteDaviesType1 and @apatrickmooney a shining reminder to all of us that diabetes is no barrier to a long and healthy life, but she is right to draw attention to the fact that the very success of treatment and care for Type One diabetes since the discovery of insulin therapy in 1924 inevitably leads to there being a growing cohort of older people with Type One. The discredited epithet “juvenile” for Type One still persists enough to sometimes give the impression that it is a young peoples’ condition, which it of course isn’t. And therein lies a challenge for all of us who live with diabetes. We’re very good at self-care, but how good will be at it in old age?

My own “reflections of my life” in recent months inevitably include an awareness of the ageing process, and whilst I am not and never have been, one to dwell on doom and gloom, I nevertheless cannot help but wonder what it will be like to live with Type One at an advanced age.

My own parents both enjoyed good physical health and led active lives well into old age, but if one fear does haunt me it is that of succumbing to the Alzheimer’s Disease which turned my late mother, once a lively, witty and energetic schoolteacher, into first a grotesque caricature of her former self and then an unrecognisable and unrecognising shell of a human being, whose death at 85 in 2013 was a merciful release both for her and her family. I was not a blogger at the time of her decline and death, but it is a story that I may tell on here one day: to end up as utterly helpless and unaware in the final years of life as she did, and to become totally dependent upon others for diabetes management is a very sobering thought for me.

As I wrote in this recent post about technology and diabetes, I accept that I am too old to have any prospect of being cured of Type One, and I also accept that whilst the health of older people is much better than it was even in the recent past, I will over the years that I have left become weaker, frailer, more forgetful, less capable and so more dependent upon others.

But let this not end on a gloomy note. I am very well thank you, busy creating a garden, building a family tree, collecting and posting photos for daft #GBDOC collages and organising events for my family and others. And many of my friends, especially those in the diabetes community, are a lot younger than me. So I am a long way, I hope, from being “put out to grass”.

And at the risk of repeating the conclusion from that recent post, I have great faith in technology to help me both with my life in general and with diabetes management. I feel blessed to be young enough to have embraced the revolutionary changes in ICT that have swept through our lives over the past couple of decades. It is easy to think of smartphone addiction, social media and the like as a young peoples’ thing, but these gadgets and gizmos which we all love so much will be a massive boon in old age that my parents’ generation have in many cases missed out on. I imagine the care homes of the distant future being full of old folk, still sitting around on chairs as they do today, but all clutching a tablet or smartphone and fully engaged with and enjoying stuff like silly videos on You Tube, gifs and viral posts on social media. And hopefully, they will be a lot happier for it. Technology and old age certainly do mix.

For those with diabetes, is it too much to ask that access to technology - pumps, CGMs, closed loops and the like should perhaps be regarded less as “just for younger PWD” and more as a priority for those of more advanced years.

Now, back to the digging….