Traps for young players

Or, rather, traps for all players! Age is no barrier to Alzheimer’s, as many have discovered. And the effects and behaviours are very wide ranging indeed. My first glimmer of recognition of its effect on my wife was mostly disbelief. Surely, we all forget things. But back in those early days it just seemed ‘normal’ to be a bit forgetful. Alzheimer’s is more than simply forgetfulness.

Memory is, undoubtedly, the key indicator, but it’s not just that, it’s also a myriad of other variables. It was the unrelenting repetition of irrational behaviour that marked the onset of Alzheimer’s in Dorothy. My wife, the mother of our five children had always been the practical partner. I was often either away with daydreams or away on work; she was always the one devoted and dedicated to the home front. A more committed wife and mother would be hard to find.

The traffic on our road of life was always busy with little time to take shortcuts, or even detours. That journey slowly changed. Our children, one by one, married, and left home.

After I moved out of corporate life, Dorothy and I revelled in running our new venture, a small retail plant nursery. Ten years later, we finally moved into full retirement mode and did some long-deferred travel. During those latter years, our children began to see changes in their dear mum’s behaviour in unexpected ways. As I’ve mentioned in earlier narratives, I almost didn’t see that Dorothy’s frequency of forgetfulness was more than just age related.

It’s common to not recognise the onset or severity of Alzheimer’s. That’s because it most often just sneaks up on us. We are loving people – we make allowances and excuses. We compensate. We shun the increasing reality that there are perplexing, persistent problems in how we are relating to our loved one. We don’t recognise the signals.

Recognition is complicated because it manifests itself in a myriad of mixed-up messages! How we process the responses to constant ‘forgetfulness’ can sometimes cause us to be unaccountably angry, even frustrated. We don’t always see the reason why our lives are changing, and why our responses to our partner’s behaviour are changing, are different, even daunting.

If only. If only I had recognised earlier – just some of those symptoms! If only I had responded, not just with love, but had sought help to identify a reason….

If only. That was my mistake, blinded by love and ever ready to make allowances, I didn’t see it coming…. It’s a trap for young players and lovers, and especially we older ones!

Multitasking

Walking and talking, or just walking and thinking, and working. That sounds like a tongue-twister or maybe a misprint, but it is neither.

Sometimes being constantly present with a partner who has Alzheimer’s is really hard work. But being able to share time walking outdoors can be a superb way to ease the burden and find some quality time together.

If mobility and the weather permits, a casual walk together in a park is a wonderful way to relax. It was always a perfect way for me to make a happy and healthy connection with my late wife Dorothy. She had always loved her garden and especially in the earlier days of her diagnosis, we walked every day we could.

It was a lovely way for us to be together in a calm and relaxed way as we walked hand-in-hand in our nearby bushwalks and public reserves. Visiting shopping centres, however, was always fraught with tension and unexpected encounters. But a walk in the bush – sweet!

Sometimes we would talk a lot, sometimes hardly at all. It was easy to find a stimulus to help us enjoy shared time together. We would speak or nod acknowledgement to other walkers, enjoy looking at trees and plants, even the shape and variety of leaves, stones, and insects and especially, birds. Outdoors or indoors, we looked for an exchange of minds, if not words. Yes, a walk in the park is great therapy!

A walk in the park may not be the right stimulus to achieve an improved connection for you and your mate but it worked for us, right through our life travels. Being out in the fresh air continues to help me break free from frictions and stress – to find a closeness to nature and to be at ease.

Now, as a single silent walker, especially now in Spring, I still stop and look and smell the bush, the gardens. And I also remember all the walks we had together in our travels to so many different places for over half a century. Now that was multitasking – on whole different level….

FYI “For Your Interest”

Recently, I had cause to check my bank statement and thought about that word ‘interest’. Having an interest in something or someone else is always pleasant as long as we are not just being nosy! To have an interest in a range of activities is a positive way to maintain a good balance in our lives. The lack of interest, bank or of any kind, is a sad state of affairs.

We often use the term healthy interest, meaning both a good earning capacity and an inquisitive desire to learn more about a topic or a person.

In that personal sense, having a strong interest also seems to make a big difference to how we feel. I recently visited a friend living in a care home. My friend’s interests seemed to revolve around the quality of the meals to the exclusion of almost everything else. It took me quite a while to steer the conversation around to other topics that I knew had been so important in his earlier life. Once we started to talk about his love of singing and reading, it opened up a happy time of reminiscing and re-creating lots of happy earlier times.

I’ve noticed before how other older folk who’ve had strong interests in younger days usually enjoy talking about them; finding a sympathetic listener is usually the problem. Of course, it’s the same with me, and others like me who live alone: we all need to interact with someone, anyone, at some times. Sharing our thoughts and loves is always easy with a partner. But without a confidante, we can become morose and boring and sometimes it’s difficult to break out from that inward-looking perspective. Getting the balance right – loneliness or boring someone – isn’t always easy.

Usually, I take the easy way out, just remain isolated, then ‘stew in my own juice’. But luckily, I am also pretty inquisitive. I’m stimulated to learn how my friends are coping, so off I go and do some visiting. My own state of mind improves as I exchange greetings and we share something of our current (and maybe, past) lives. Regardless of our relevant disabilities, the mental stimulus of our being together is usually enough to activate some lively discussion and break the tedium of our separate lives!

Recently I visited another old mate in a nursing home to discover him playing bingo with a group and I was invited to join them. As we played, I was soon reacting with the other players I didn’t even know! Sharing that activity actually enlivened him, me, and all the others around us in unexpected ways.

Nothing works better at lifting my spirits than an encounter with another human being! Failing that, reading a book is useful, so is walking, or cooking or making something. But talking with another person about their exploits, their interests, and their families, is always of interest and a stimulant to me.

So, don’t fret about bank interest, just take some interest in someone else. I find it pays dividends all round!

Time of our lives

Last month seemed to fly, probably because so much happened – and it all happened so quickly. Or maybe it just seemed to fly because I’m slower, or was it because I was ‘on the go’ a lot? Time is so easily measured, but how we use it somehow affects the way we perceive it. Five minutes waiting for a bus can seem like an hour, yet five minutes reading a good yarn is over in a flash.

Having spent the last ninety years travelling on this bus of life, I can tell you it seems like that time went in the blink of an eye! Last month was busy, as usual, but the second half simply flew. The speed went up a notch when my entire family gathered for my birthday. All the family but one grandson (who is away overseas and who made a special phone call) were able to gather in Melbourne for my birthday. I am still recovering from the joy of that time we spent together to celebrate. The one other person who couldn’t be there, my dear wife Dorothy, was present in my mind and I’m sure her five children held her in their hearts, too.

It was a very special time for me to reflect on all the past years but, as I have probably said before, it’s the ‘here and now’ that we must enjoy and to live as well as we can. Looking back and reminiscing is, of course, important; it shapes us and prepares us for today and tomorrow but living fully in the moment is what I aim for. That feeling of being present was what I strove for on the night of my birthday dinner with all our family, but…I was so overcome with emotion that I could hardly even speak! I had planned a little speech to specially thank our daughter for her role in finding the venue and meal arrangements and to thank her brothers, who all had a hand in ensuring the night worked so beautifully. Didn’t work! I was struck dumb and fumbled my way through a short, ineffectual talk about ‘olden times’, not a thank-you speech! Never mind, over the preceding months, I had written a little book about my first ninety years and gave a copy to everyone; far from complete, but a little glimpse into my life that might be of interest in another few generations…

I know, from the all the happy talk and stories on the night, that we all had a fun time together. Some of our children had pieced together a slideshow of some old photos, which was great fun. And my family travelled from Queensland and northern and southern Victoria; no mean feat to assemble all our five children with their partners, their children, and their children – four generations of us. And all together and all good mates. How great is that! I love them all dearly. The tragedy is that I don’t remember now if I actually told them that on the night! I seemed to be in a trance-like state for most of the evening! The night was rounded off with a tear-jerking little chorus by our youngest grandchildren who sang a little song they had composed! It was an updated version of the one that they’d sung to Dorothy and me on my eightieth birthday. I wonder if they will be able to sing it to me again in another ten years?

I thank God for my life, my wife, our children and their loving partners, their children with their partners and children and the next generation of babies – now three, and more to come! I feel so blessed to have such a family, and I continue to pray for my friends and all who are affected by health problems, especially those whose partner is affected by Alzheimer’s, and others who are experiencing family difficulties and particularly those who are alone with no family. May you, my reader, also know the love and peace of Christian fellowship.

Wandering & wondering

The quote “Not all those who wander are lost” is from the poem “All That Glitters Is Not Gold” in Lord of the Rings, by J.R.R. Tolkien. It simply means that just because someone likes to explore, it doesn’t mean they’re lostHaving a nomadic lifestyle doesn’t necessarily mean you are without purpose, like me as I prepare to set off to warmer climes in the next few days.

But not until I have passed four-score and ten years. Our little family (well, not so little these days!) have arranged a birthday celebration for me. We will gather from various places around this great country; a rare chance to meet up with each other – some for the first time. The youngest great grandchildren will have their introductory meeting with this old bloke, to be cuddled and enjoyed; one of the little ones will get their first ever snuggle from this dear old Great-Grandfather. Hard to believe I am still here to do that!

This gathering, where we will all sit down to a catered meal together, away from the rush and bother of our ordinary lives, will be another memorable occasion for me. And, despite the indisputable fact that my memory is gradually slipping away, it is an event that I hope will be a significant milestone for us all. It will be a chance to discover, and rediscover, each other in happy ways that will linger in our minds, forever; certainly, it will for me.

No doubt some of my extended family will have often met and spoken before and shared stories before that dinner. Despite all the social media opportunities that abound, I hope it will be extra special for them; to be together and share a meal and enjoy chattering in real time. I’m sure we will re-discover the art of face-to-face conversation hasn’t yet been lost in this techo world.

Nothing beats a good chinwag up close and personal! I hope the gathering will be a happy relaxing time, it surely will trump a funeral! The last time most of us met as one group was at my dear Dorothy’s farewell, well over two years ago. I know she would be pleased for us all to be meeting for a special birthday. My special prayer is that she will be with us in spirit, laughing and chuckling at how no one looks any older than when we last met! And what a joyful way to welcome the newest babies, even the one that’s ‘well on the way’ but not expected for a few more months!

Why did I start this story with the words about wandering? For two reasons, Firstly I knew that, once I started typing, I would begin being sentimental and loquacious. Secondly, after the party I am wandering off (again) on a little excursion. One of our sons is taking me a on a ‘Bucket list’ rail journey to northern Queensland. He’s there to make sure I don’t get lost…….still just exploring!

Memories are made

Having almost reached the next milestone (but not a millstone!) along my life journey I can now stop awhile and look back, gently, over the past few score years. I am so blessed to be still in reasonable shape. My personal approach is normally ‘carpe diem’, perhaps these days followed by ‘slowly’. Remembering is always bitter-sweet medicine, best not taken in big doses.

There have been too many ups and downs to linger long in the past and, as for tomorrow, well I am now inclined to only deal with it when it arrives! Certainly, we can learn from the past but for the most part I have found it best to leave it there. There were times when everything looked lost, broken, and totally unfixable, the future seemingly bleak, or at best, complicated and worrisome, and I did get maudlin and morose and miserable. I can remember Dorothy’s Mum saying something like “Sufficient unto the day”, and I reckon that’s probably good medicine.

Whilst I’m not game to look too far ahead I do like to plan ahead, just a little. That way there’s always some activity, a book to read, a place to go, something to look forward to (just not too ambitious at my age). I have, nevertheless just had a sneaky think back on my earlier days (let’s say 31,000of them) to reminisce, just a little.

I recalled the time I went to kindergarten and how it prepared me for a life of learning – and later, learning from life. And all those formative years from then on, slabs of school life and beyond. Even some days with not so joyful memories. We’ve all had some years that are best forgotten; I’m sure my readers will have similar memories of those young formative years.

My best memories, after some troublesome teen years, began from the age of seventeen, when real life started in earnest for me: study, work, then marriage; then family with its myriad of dimensions, all of which propelled me at various speeds along the road of life for the next thousands of days.

Now here I am, looking at that road, now going up the hill, not quite sure what’s over the next crest. Most of my journey is behind me, with little flags on the map marking the places and activities and the detours along the way. And I’m happy to look back sometimes, but I don’t need to revisit many of them! My roadmap is much like that of my readers, and what’s done is done, and tomorrow is another day, so I’ll keep planning my route ahead for a while…

Plan, that’s what we all need to do, isn’t it? That, and a prayer for the heart and health to carry it through; forget the rest. Every day will bring a new start and, even sometimes new problems, but that helps to make us resilient, and our days memorable.

Everything changes

High School students will probably remember Newton’s first law of physics, which is something like: “Every body continues in its state of rest, or of uniform motion in a straight line, unless it is compelled to change that state by forces impressed upon it”.

Wow! That’s true of our human bodies, too, isn’t it? It seems to me that most of us, in general, are resistant to change. We tend to strive for stability, steady progress, predictability. So, when confronted with a disturbance of that balance, we often find a way to ignore it or circumnavigate it and keep on doing…well, just the ‘same as normal’.

And it’s my experience that when confronted, eventually and finally, with the inescapable truth that my partner had begun the dementia journey, I did the same. We all tend to rationalise; we say it’s just a temporary aberration, or even blame ourselves – it’s my fault – I should have explained, should have managed the situation, whatever it was, differently or better. Or perhaps just ignore the strange reactions, the forgetfulness, the repetition, the moods. “I will cope” you say, “because we all forget stuff as we age, don’t we?”

Usually the acceptance, and the reality, of memory and behaviour change emerges slowly to a partner. Often it is picked up first by family and friends, then finally, with reluctance and trepidation, by the partner. As a devoted partner, we are usually quick to forgive forgetfulness, memory lapses and small behaviour changes. After all, who amongst us doesn’t have some difficulty remembering stuff?

To manage, to survive, we are inclined to go gently with the flow and just use the mechanisms we are comfortable with. We learn to adjust to the pace and manage to keep our distance from disturbing personal technology trends. At best, a few of us actually learn to cope with – or somehow manage or ignore – the fads and Facebooks of the current age. But there is a difference between that kind of adjustment and the major lifestyle changes that emerge when we need to cope with Alzheimer’s.

It can be tricky for us to even recognise that our partner’s behaviour is changing, sometimes in subtle ways. It’s not always quickly apparent, because we are wired to forgive! Our partner’s inability to adapt, to learn new skills and to communicate clearly may begin slowly then irrevocably progress. We tend to ignore and rationalise the minor changes, ascribing them to just getting older and forgetful.

That is exactly what happened to me and will be happening to others who are facing Alzheimer’s in their partner. Dementia discloses its presence in so many diverse ways, and recognising and dealing with those changes in your partner’s life is always difficult. Some situations will certainly test your patience and love. Persistent and unpredictable responses and behaviour are always a challenge!

At each stage of our lives, all of us will be changing, for all sorts of reasons and often in subtle ways. We are inclined to make allowances and to forgive unintended events. But ultimately, we must face the reality of a distinct and ongoing trend when our partner’s behaviour is persistently different, sometimes covert, and unquestionably, can even be unsafe.

Talking to your family, and to your doctor, as we discussed earlier, is the first step and takes some courage. Alzheimer’s is seldom self-diagnosed. So, you need to be proactive and, with love, take steps to ensure that you manage both your lives – to continue and enjoy being together for as long as you can, in this changing world….

Connections

Being connected in today’s vernacular can mean anything from ‘knowing someone’ in a specific role of power or influence, or simply having ‘access to the internet’. One thing is certain; we all need connections!

Even living as a single human, it’s true, we can accomplish much, and often with surprising results but, like Robinson Crusoe, we can achieve many more satisfactory outcomes if we have a mate, a partner. We all need company; we are ‘wired’ to connect with others. Adam, notwithstanding being off to a bad start, went on in life with Eve. And most of us in our own life journey strive to make that bond with another human being.

As children we usually start the connection process with our parents, then go on to build relationships with siblings, relatives, and friends. Sometimes, for a huge range of mitigating reasons, that doesn’t happen. Sickness, even death, can intervene and break that progression. But those of us who grow into maturity will usually develop a truly amazing human network. We instinctively seek companionship from birth and later through school, adolescence, work-life, neighbours, sweethearts, fellow-travellers. Hopefully we find a soulmate and then travel together along life’s byways.

But sometimes those relationships don’t quite coalesce, or don’t last. Even in a neighbourhood-marketplace of many thousands, some of us have difficulties, often related to illness or disability, in making those essential life-affirming connections. Some may not even achieve a peaceful and loving relationship: that sought-after and vital link with a ‘significant other’.

Those who do make that link are likely to have their singular lives transformed and enriched in many wonderful, shared ways. Meeting Dorothy, marrying, and journeying through a very full, family-filled life – for well over half a century certainly carried me, us, through quite a few of life’s joys and challenges!

Then Alzheimer’s changed everything. But we were lucky, because by that time our children had received the benefit of Dorothy’s share of parenting, had left the nest and were well settled into their adult lives. It would be much worse for other families who experience ‘early-onset’ Alzheimer’s. Certainly, at any time, that diagnosis can fracture, or at best fortify, a family. At any age it can cause a void that will never be filled: what was whole becomes a hole.

Personally, I am able to find solace and healing in my understanding of a caring, not causing, God; it must be hard for those with less faith. We are all, even in this day and age (for unfathomable reasons), imperfect humans. At various stages of life, we all struggle to remain grounded, happy, and purposeful – especially when we lose our longstanding soulmate for any reason. From birth we aim to not be alone and as babies make sure our presence is known! In later life, it’s still beneficial to always have a support crew of family, friends, and/or medicos…..

If your mate is afflicted with a debilitating physical and or mental condition, whether it’s transitory or permanent, help is available, and you need to find it. Caring for another is hard work even when supported with love! Yes, I can attest, it can be confusing, daunting, tiring, scary and…. where do you start? But the fact you are reading this means you understand some of the implications. And there are links on this site to help, but only in a small way. Your first step is to have a meaningful discussion about your partner’s condition with your doctor.  And talk to your parents if available, and most definitely your children. Like mine, they saw the tell-tale signs long before I did!

Take heart. Make a start. This Alzheimer’s Road could be a long one, and can get rough, you need all the help you can get – in a sensitive and practical way. Don’t ignore the signs and symptoms. Make the right connection for help. “No man is an island” is a quote by John Dunn way back in the seventeenth century and it just means the obvious: we are all ‘connected’ in some way!

We are better and stronger when we share. I found the need to connect or collapse! So, if you partner is showing any signs of Alzheimer’s…read a bit more about it, start early and finish stronger. Go…. connect, now!

All at sea!

I usually write on topics related to Alzheimers but this time I thought I would write about me, or rather my current journey. Because I am away from the Alzheimers road and at this point. All I see is sea.
Water, water everywhere – and it’s deep! Not the first time, I hear you say, that you’ve been in deep water, Bill! And, according to the talk I heard today, as I sail in this enormous ocean liner, we are cruising above perhaps the deepest part of any ocean on earth and I’m not sure if that’s a comforting thought…
Wow, this is a big ship! I still haven’t explored all of its features, but I have discovered that apart from the fabulous food in the ‘public’ dining rooms there are numerous other places to eat. Most of them cost extra, so I am not going there! No need. All I can eat and a huge variety, all the time in the regular dining rooms or at the buffet self-serve up on the almost top deck. Spoilt for choice! It is actually difficult to not over-indulge. But I am strong, nearly all the time.
I have probably said it before, but I have to say again, it is lonely – even though I’m surrounded by nearly five thousand or so other ‘coupled’ souls. Although, that does have some positive aspects, like being able to decide when to eat, or walk, or read, or which activities to attach to!
There is no internet access (unless you pay a really, really high price) and most certainly no mobile phone connection. I had high hopes of at least sending an email at our last port of call (free access at Macca’s with a whole shipload trying!) and what with one thing and another, I was back on ship and realised I’d missed out on sending! Well, there’s bound to be a Macca’s at our next port of call, maybe I’ll try again….
There are quite few Aussies on board but probably more from USA and Canada, and all are mostly in the 60 to 100 age group, although there’s a fair sprinkling of teenagers who are delighting in the range of activities – from roller-skating to swimming and pinball machines and well, a huge spectrum of physically interactive sports and pastimes. Of course, there’s lots for active (and less active oldies, too) like wall-to-wall pokies and shops and plenty of taverns and drinks venues! At my age and disposition, I am happy to read a book, walk and eat! For all that, I will be glad to be back home again, but in the meantime, you could say I’m recharging my batteries!

Grace

Reflecting on that word, I realise it’s sometimes only thought of as a person’s name or perhaps the state of being graceful. But to me, it’s word that has a more profound meaning. I’ll get to that later….

Gone are the days when Dorothy and I would plan together for our next adventure. Sometimes home and family related or, in later years, a wider travel experience. Gone, too, are the times when we could share remembrances of all those years. Now I must plan my travel, alone.

But that doesn’t preclude my solitary recall of earlier times, nor diminish their importance. It simply means I can’t re-share them with her; they are no less real. Dorothy’s ability to do that had slipped away some years before her death but those  experiences will always remain with me.

As we move on in our lives, each of us will ‘travel’ in our own way. With every breath we are masters of our thoughts, our actions, and reactions. What we do and say is who we are – and affects everyone we touch in some way – it’s what makes us unique and, to varying degrees, precious to each other.

The way we respond to the swings and roundabouts of life is conditioned by all of our earlier shared experiences – with our partners, with our family and friends, and those we have worked with and prayed with. That life journey with its ups and downs is often burdened and shaped with baggage of past mistakes, of wrong decisions, of attitudes or behaviours, and of things done or undone; we all know the feeling!

During her later years Dorothy was not encumbered by that baggage; she seemed free to feel only the present moment, and to savour it, or otherwise, just as it was –  right then. Her Alzheimer’s condition highlighted the importance of ‘now’, and it helped me to savour those precious times together as we sought to find some joyful times together in those later times…..

I learned also, when Dorothy was in care, to take some time-out alone; to stop and grab hold of my swirling mind, to reflect quietly and to pray. For me, that’s an essential and positive activity which continues to be a precious thing – a time and place where I can still find solace and peace, indeed strength, to face the next moments and days of my life.

I am indeed grateful to have my Christian belief of a caring deity, however insecure and uncertain that faith may be; it gives me purpose and meaning and allows me to accept and sense the power of prayer. It also helps me to recognise that my experience of adversity is as nothing compared to the afflictions of so many others, even here in this little corner of the world, now exacerbated by the current, awful consequences of the coronavirus, floods, fires, and conflicts around the world.

Does grace help me to cope, now in my time of ‘singularity’?  Yes, it does, even though sometimes I think, like so many others, “Why do bad things happen to good people?”. That’s an enigma of humankind – another rhetorical question. Bad things don’t just happen to good people, they also happen to everyone – just as good things can.

Maybe we can all cope with adversity by accepting the concept of ‘grace’, an attribute that empowers most people to respond with intervention and care – sometimes called service or love. So, I reckon grace is just love by another name, don’t you agree?