Giving you the drum…

“Tight as a drum” is an old saying, easily recognised by my readers as meaning ‘all tensed up’. Drummers will tell you the golden rule: ’Over-tightening will only stress and damage the instrument’. I have learned that the same rule also applies to us!

Recently I attended a small group session on-line when we were encouraged to recognise and avoid the consequence of ‘over-stress’. It’s quite normal that we feel stress in every aspect of our lives, and that’s OK. Some stress can sharpen our minds and, like a violin string, produce a beautifully correct outcome! It’s the ‘over’ part that’s the problem! Constant over-worrying, sadness, depression, or just being miserable is not only detrimental to our health it is also socially disastrous. Who wants to be in the company of someone full of misery about themselves? At times we all need to find a way out of that abyss when we can only see and feel worthlessness and insecurity; but it’s not easy, is it? That’s why I was heartened to think ‘outside the square’- or that bottomless pit! Because it’s true, isn’t it, that when we are feeling down it feeds on itself, becomes a self-fulfilling prophesy, and we become trapped there: the sadder I feel, the sadder I get.

The session suggested what should be obvious: that we learn to stop and take time out. To find a way to still our mind by simply concentrating on something outside of ourselves, to focus on an object or a space; to concentrate and visualise – anything. Try it! It does require a mental effort and a mindful step. I took that first step when I joined a small group of like-minded people and accepted some professional guidance. The result is that I now have a simple technique that helps me regain and restore a degree of normality, or at least sociability, when otherwise I might feel like crawling under a rock!

The method is like a self-administered tonic. No drugs, no pills. The key word is ‘stop’. Stop and clear your mind; stop every internal and external thought and current influence and simply focus on some ‘thing’ or object close by, or outside through the window. Sounds easy, eh? Stop frowning, clear your mind, and try it! So easy, and it works! Now you know my closely guarded non-secret, you can do it! Just stop. Sit comfortably and relax. It’s like taking your mind on a holiday, away from imagined pressing realities and necessities. The world kept spinning didn’t it?

With a settled mind and optionally with your eyes closed it becomes possible to ‘visualise’ – and that’s the key word. What you visualise in your mind’s eye can be anything – your choice. In my case, with eyes open I focussed on the gently waving tips of a nearby gum tree. Another participant explained later they thought about (with closed eyes!) the seashore, the smooth sand, and gentle breakers. Our facilitator used that scenario to then verbally take us down deep into the ocean, to a place where the surface turbulence was stilled, where it was peaceful and quiet. After we’d totally relaxed, and with a clear mind, we could take control of our upward journey again, back to reality. Refreshed and calm, not frowning and tensed. Maybe that won’t last…but we can go back, any time…..…..

That mental exercise demonstrated how we are totally capable of being in control; that our muddled minds can be gentler, relaxed, and competent, not mentally compromised, and certainly not stressed. We simply need to be self-aware. Aware of the destructiveness of tension and stress, which only feeds on itself.

So, from this point on I will try to not be a ‘frenzied friend’ who is no fun to be with. I’ll try to remember that a drum is a necessary part of a band and works best, like us all, when it’s not over-tight! I also learned at that session to value the ‘sounds of silence’……..

Winter Joy

I know a lady called Joy. She is, by nature, sweet and a pleasure to be with, most of the time. But, like the rest of us, I also know that she has her ‘down’ time, too. I’m reminded of that old rhyme by Henry Wadsworth Longfellow, about the little girl who “When she was good, she was very good indeed, but when she was bad she was horrid”. Being horrid or even just being out of sorts is not confined to girls – us blokes have the same range of emotions! The feeling of joy can be fleeting, and, in winter months, it seems to fleet more often. The absence of joy in a person could show in many ways: as unhappiness, or grumpiness or, at its worst, depression.

I’m certainly not a psychologist, but some forms of depression don’t need much diagnosis. The effects may, or may not, be apparent to the sufferer, but certainly their friends will often perceive a difference in their behaviour. Most of us don’t have ‘clinical’ depression, thank goodness. Somehow we often get an inkling of a friend’s feelings when they are down or melancholy, or simply sad. And our friends and family will often be aware of the difference in their normal interactions with us and will begin to worry if our condition continues for more than a few days. Fortunately, for most of us, being ‘down’ is a short-term malfunction of our social life and we identify it and can usually take our own remedial action!

I know when I’m down…. Can’t be bothered doing anything – cooking, cleaning, shopping, even reading, it all seems so pointless. My personal immediate response to feeling down is to sleep. At it’s worst, that means not wanting to get up in the morning. And that usually follows a restless night when I have spent the wee hours reliving all the things that are not right in my life – in the past, now, and all the fears of the future. Usually, at my lowest, I remember God and I pray. And invariably that process includes identifying and summarising all sorts of thoughts and committing them to my Lord. Somehow that ultimately leads me to still waters, and I sleep. That’s not to say I always wake refreshed! The process can take days, but I have faith that it will work, and it does, and it continues to help me see beyond the winter of my mind.

Of course, there are other times when I feel worthless, weary, and unwanted. I sometimes deal with that by walking. Yes, I walk it off! There will come a time when I can’t walk, and then I will need to devise another strategy. Meanwhile, I walk the streets and parks in the area around where I live, sometimes with a chilled and constantly churning mind. Then I seek solace in stopping to smell the roses, to admire or despair at the state of suburban gardens, and delight in finding a low brick wall to sit on for a rest. I’m lucky that there aren’t many days when I can’t find a gap in Melbourne’s notoriously changeable weather that allows me to shuffle out for ramble.

It’s a bit hilly around here and that’s not a bad thing, ‘cos it forces me to breathe deeper and walk even slower when my heart beats faster. Those hills (that feel like mountains) also help to bring me back to reality when I ‘fence-sit’ to recover my wind and my wits, and consider whether to turn back or press on! The ‘recovery-stops’ help to ground my thoughts and rest my body. It’s then that I notice things up close: the kempt and unkempt front yards, the flowers, the grass, the traffic. The stillness and the movement seem to mirror my emotions and I thank God I am still able to experience the wonder and complexity of life wherever I am, indoors or outdoors.

Walking outdoors in winter, I am rugged up snugly in a warm jacket, a hat, and a scarf. Now wearing a facemask most of the time I am almost unrecognisable to the odd passer-by who, more often than not, doesn’t even respond to my hello. Never mind, I’m upright, on my feet and mobile with walking stick and, as I ramble on, it’s an enjoyable time to reminisce and re-live some of those past happy times . Behind my facemask, a passer-by won’t see what I’m smiling about when I see a bush we often sold in our little plant nursery (we ran one for ten years after my early retirement).

And when I get back from my walk, I seem to have forgotten all those depressing thoughts I took with me when I closed the door and set off. If it’s too wet, I’ll stay home and do a crossword or read a newspaper or a book.

So, there’s nothing quite like a walk with my Maker to straighten my back, lengthen my stride and sharpen my good memories …. and if Winter has come, can Spring be far behind?

Alleviate the suffering

Firstly, let me say that I understand not everyone survives COVID, and my sympathies are with those families who know that only too well. Most people, fortunately including me, survive it, here in metropolitan Melbourne, and this is a simple story of how I am getting through it.

My personal experience of it started, as for most folk, with just minor ‘cold’ symptoms which just got worse. Of course, they always feel worse when you can’t grizzle and moan about how crook you are to someone! Living alone does have a few disadvantages, and that’s one of them. I had been given a free pack of tests by my pharmacist – and have been able to see a happy, negative display line on the little pad on numerous previous occasions. But, feeling unsociable and slightly miserable, I thought I’d better test again; this time was to re-assure myself it was merely man-flu, a ‘cold in the head’.

I watched, spellbound, as the first all-clear marker emerged, then goggle-eyed as the second line materialised. I closed my eyes for a couple of seconds, willing the image to change. I repositioned my spectacles and looked again. Then, from my elevated health-righteous position, I came down to bare earth with a thud! There they were: the two significant, perfectly positioned red tram tracks across that little plastic pad! Panic! Repeat test! Same result!

What do I do now? What’s next? Where did it come from? Do I need help? Who? What?…. The questions were swirling in my mind. I couldn’t think clearly. Finally, my strained sanity started to subside (and of course, that explained why I’d had such a dreadful toss and turn, sleepless night….). It took a little while until I was able prioritise a sequence of responses: Firstly, who should I notify? Think… Doctor. I rang the office of my GP, left a message for her, and asked the receptionist “…what next?”. Easy, nothing else to do! That didn’t sound right, to me, even in my befuddled condition. Surely I needed to be added to the statistics? I did a little internet searching and, quickly and easily, discovered of course I DID need to report it. So accomplished that quite easily and instantly became another statistic! As I completed that task, I couldn’t help thinking about how deadly this infection could be…

Then my doctor rang ME! I think perhaps that is only the second time ever, and she was helpful and supportive. Nothing to worry about. Hmm, alright for some… but, here, it’s me…. I’m dying…. Is it possible that my use-by date could be nigh (I’ve already passed the ‘best before’). Fortunately, I can now say my doctor was right, and upon a calmer and more logical self-analysis, I didn’t really feel that bad! But that was the beginning and, as it turned out, the way it’s going to stay till next week, and sleepless nights had just begun. I think the worst is over, and I’m at ‘night no. 5’.

I had a lovely shower today, changed out of PJs into real clothes and made up the bed with fresh linen. The washing machine has been busy, too! Crosswords, some good Netflix, an interesting book, some writing, organising and preparing, and eating meals, and coping with the odd phone call – all of that is keeping me busy. I have no desire to go anywhere at present, especially as I can see out through the window that It’s raining …..

And that reminds me, yet again, of all those Australians, north of where I live, who are still suffering from the horrible destructive and ongoing devastation to their lives because of too much of that wet stuff. Indeed, some of us have much to be thankful for. With that in mind, I will dig into my savings and donate some funds to help alleviate the burden of those who are really suffering because of those floods; and I encourage you, my readers, to do the same if you can! Click here: Qld and NSW Floods Appeal | Australian Red Cross

Who’s celebrating?

These days, I sometimes forget Other People’s Birthdays (OPB). I do, somewhere, have list of family and friends whose special days I would like to jointly celebrate with a card or phone call or in some way send my loving greetings. I really don’t ‘do’ Facebook or any of that modern new ‘e-stuff’. I’ll admit that email is my preferred communicator, and I only begrudgingly (and hardly cope with) mobile phone stuff. And I’m not quite organised enough to deal with all the seemingly hundreds of birthdays and anniversaries and appointments and due dates and, and,…. Perhaps it’s because there are six or seven special places where I might have stored those OPB list/s that I don’t find any of them until after the event. And it’s not the same, is it, to phone or send a card a week or a month later, saying “Sorry, I forgot your birthday, but I really do still love you”? No, I’m guessing you’d agree, it’s better to let it slide, and move on….

That’s one of the reasons I am writing this piece. It’s especially for Axxx, one of my seven beautiful granddaughters. I can’t remember the other reasons, but one is that I simply couldn’t send her a card in time. And anyway, I forgot, and I can’t get to a post office in time and, even if I could, I can’t – because of COVID (I’ll write more about that later!)

Look, I know birthdays are always special, but the rest of you, my mob and my friends, shouldn’t expect this sort of Special Birthday Greeting posted on ‘the Web’- it’s definitely not going to happen! My OPB list it would keep me just too busy and I’d never get ANYTHING done! Get real, time is so precious when you are retired. Remember that Axxx! But I do want you to know, my gorgeous-almost-favourite (dare not upset the other lot) granddaughter, I love you. And I know this birthday marks your significant decade as a “Lifetime Achievement” and it’s also your first since your marriage to Jxxxxx. What a year it’s been! I do hope you will be able celebrate tomorrow, Thursday – seize it and share it (well, wear a mask when possible!). You can also use this day as a chance to pause and review your life journey, to savour the joyful times, learn from the other times; and to go forth, with your loving Jxxxxx by your side, onwards into your renewed year.

My personal birthday present for you, Axxx, is that you will be refreshed and ready to enjoy the challenges, opportunities, and achievements over the next dozen decades; and always remember that it’s the shared moments that are the best and most memorable.

Each birthday is as good a time as any, I think, for all of us all to reflect on our journey in life. The year since your last birthday may have passed like the blink of an eye, or it may have seemed like a hundred years, it’s different for each of us and at each stage of life – time is funny like that. But everything that ever happened in our life has made and shaped us – and hopefully improved us. This day is also a wonderful time to remember and savour the joyful times past, to plan ahead, and resolve to accept the things that can’t be changed. Then we can start our own ‘personal new year’ with a heart full of blessings from God to enrich and equip us to do only good things in the years ahead. It’s certainly an appropriate time to make a ‘new birthday resolution’ or to simply look for a way to renew (or refresh or re-charge or revise) an old ‘forgotten’ one!

For me personally, birthdays help me to recall happy memories – the best gifts of all – and the sweetest. Cherish them, Axxx, as I do. And one day, like me, you’ll have a great granddaughter, or more, to add to your OPB list/s……. Who knows?

Symptomatic sympathy

I sat apprehensively in pyjamas and dressing gown, pondering how I would react if the test showed positive…..

And that was after a very long, sleepless night of discomfort with a sore throat, runny nose, and a headache. And did I say aching limbs and a sore back, too? ‘Turbulent’ might suffice as a descriptor as I sucked on Disprins and throat lozenges all night, with no one from whom to seek solace! Woe was me! how was I to cope, even survive? Now I would be locked-in, locked-up, and too daunted to contemplate shopping and meals and socialising – probably ever again! And that was just the beginning of my deliberations on the depressive reality of isolation, and the dismal descent into the depths of my psyche.

So, as the day dawned I carefully, albeit reluctantly, pushed the tip of the swab-stick into the unpleasant, presumably infected, recesses of my mucous mouth and twirled it all about. Much more carefully than it’s ever been done before. Better and more thoroughly than those who insert it into my brain (almost) when I visit the Care homes to fraternise with my friends. No doubt about it, I just knew with unerring certainty, even before the swab left my mouth this morning, that I must have the worst case ever of COVID.

But, as I waited for my test results, I started a crossword puzzle and simultaneously tried to analyse my recent journeys. My shopping forays, my visits to friends, my contact with neighbours. How many days is the incubation period? Mmmm. Have I been wearing a mask when out and about, always? Yes, mostly, even at church last Sunday. And, would you believe it, at two funerals I attended during the week with a covered nose and mouth (other than when I filled my face with sandwiches and cakes!). But then I recalled I hadn’t worn it when I bought petrol yesterday; surely that’s low risk? Ah, well, that’s life. I’ve had a good run up until now!

By this time, the pink stain had started to spread…. I averted my eyes and almost held my breath, perhaps as I should have over the last few days! Back to the crossword, anything to distract me from that spreading red marker. I managed 5-down, as I sneaked a look at the stain, then back to 6-down: “Long lasting”. The answer, ‘permanent’ did nothing to allay my worst fears. Then I stole another glance at the red stain and my heart skipped a beat! How could I have been so sick, so close to death and so stupid. I couldn’t take my eyes off the little white strip as the red hue morphed, as I watched, into a clear, sharp red line. Precisely, and positively positioned at the ‘C’ mark.

Bliss. Joy unbounded. With that C, my headache began to clear, the pain in my back felt less, and even my throat was improving, a little. My cough persists but it’s not constant, and I can attest to the efficacy of the test kits to improve your well-being. I thank God, even though I didn’t go to Church this morning, that I am reprieved for now, and almost pure again! The worst aspect is that I can’t enjoy the sympathy of friends and family. Nobody is going to give me the sympathy I deserve, and I’m suffering here! Come on, surely you have some idea of my pain and suffering. It’s ongoing, too, no doubt for days to come, and very few people will ever realise how much I suffer with this ‘man-cold’, in my self-imposed isolation.

(I write these notes with a sincere understanding and compassion for those who are suffering or who have suffered from the real thing.)

It is a cruel world. Nobody knows what a load I’m bearing, with such a brave face and a running nose, poor me…..

At the beginning…

If you asked me when Dorothy’s Alzheimer’s started, I couldn’t exactly tell you. And that’s because, like so many aspects of our minds, and our lives, we often don’t see a defined starting point of changes. It just grew. It took root sometime, and like an unwanted weed, it escaped notice until it became obvious; then it relentlessly proceeded to dominate in the lovely garden of her mind. Smothering all the beautifully nurtured and carefully grown flowers of her life.

I should have noticed all those little changes – the time it took to find and choose a dress, or when she often continued wearing her slippers rather than shoes. Or how long it took to prepare a meal, or to decide what to eat, and when. Or all those other hesitations, that indecision about which plate to set on the table or placing two spoons instead of a knife and fork and a spoon. Forgetting to add water before boiling the spuds or adding salt two or three times; never emptying the vacuum cleaner and wondering why it took so long to pick up fluff….. and so many other, small, unusual actions. Not of much consequence in isolation, so profound when aggregated.

In time, that behaviour did register with me as significant, because there were so many of them, not just minor lapses. On their own, they were mere inconsequential blips that we can all recognise in ourselves. Because of our own tendencies, and despite profound and damning evidence displayed by our partner, Alzheimer’s is not always easily recognised in the early stages. And then, even when suspected, is less accepted when you are up close and personal with an affected partner. It was those relentless, albeit diverse and repetitive behavioural changes plus the increase in their frequency that should have alerted me earlier. It is so easy to accept some aberrant behaviour as normal; aren’t we all a bit weird and prone to intolerance, impatience, forgetfulness at times? Love forgives, love is blind.

But… in the end, reality wins because practicality and reason must prevail, as it did for me. If your partner displays signs of erratic or consistently unusual or damaging behaviour it is so easy to rationalise. Don’t be under the misapprehension that Alzheimer’s only means ‘forgetfulness’, that’s just one of the many behavioural indicators. Non-recognition, and failure to accept the changes, can lead to much unhappiness to a wide circle of people, and even to personally dangerous outcomes. If only some of the above actions of your partner becomes evident to you or your family, you must talk to your doctor, as I did, eventually.

Dorothy had always been supremely cool and calm in any stressful situation, proven as a mother of our five active children! So, it should have alerted me when she began to be significantly ‘less cool’. But I missed that, too. Her patience and forbearance were legendary in our family, and when she showed signs of anger towards me for an imagined misdemeanour I was, at first, inclined to take it on the chin and apologise. Repeatedly over time I recognised that there was no misdemeanour, no mistake or fault, either by me or her. It was her inexplicable reaction to an imagined scenario; like not being able to find a book that had disappeared, or a dress or a pen, or cooking ingredient. Almost anything could trigger an outburst, an argument or at least an unpleasantness in some way.

Mostly, even in the later stages of her life, Dorothy was complacent, compliant, and courteous. Those rare and unexpected outbursts of temper or anger should have signalled yet another alarm to me. Changes were happening, not only our relationship, but to her life and her interaction with things around her and to other people. Believe me, those changes to relationships and attitude were hard for me to accept. I felt, at that time, it was me, that it was my fault. And I felt guilty; I compensated. I redoubled my attempts to love her more and to accept it was all my fault, that I had driven her to this disastrous point. Nothing I did seemed to help.

Little did I realise at that stage how both our lives were about to change, even more. It was just the beginning…….

In touch

Living alone does have some advantages, but it’s not much fun! If you have no partner with you and no children living with you then you will know what it’s like to be lonely, at least for some of the time, even in a care home.

Feeling alone is more acute when you experience lockdowns and/or your only method of transport is the public system of trains, trams, or buses (or the kindness of family or friends!). All visiting can be awkward or time-consuming, or physically difficult at any time.

Yet, for those of us who are still reasonably mobile and able to drive, visiting is even more fraught because of the COVID factor. And that becomes another obstacle to face-to-face contact with those we would like to see. For some less able people having to navigate a mix of public transport to visit a friend or do some shopping is just a ‘bridge too far’.

For those of us who are reasonably computer literate these days it’s much easier and quicker, but not so satisfying, to visit electronically. We are able to use emails and, perhaps, one of the social media platforms, like Facebook other visual apps on our new-fangled mobile phones.

But spare a thought for those folk who can’t quite handle this ‘new’ tech. Without a mobile phone, their old hand-held dial phone is still a precious part of life which provides their only other verbal method of contact. So, I encourage my readers to ‘dial-up’ and keep in touch with such friends, bearing in mind it’s their only two-way link for now, anyway, to their friends and family outside the home.

So, this is an appeal: it’s especially important to keep verbal contact with your friends in aged care homes. Personal visits may not be permitted at times and, when they are possible, it will usually entail a rigorous RAT test, probably outside under cover and bitterly cold at this time of year! That fifteen-minute procedure seems such a big investment in time, but it is a small and necessary contribution to try and support the residents, and especially the staff who are ‘stretched’ at every hospital and care home.

It is incredibly difficult at most establishments to find meaningful in-house activities (and the staff to organise them) as a stimulus for movement and intellectual challenge, and that has always been so. As a fairly regular visitor to my local Blue Cross home I see, first-hand, how COVID has reduced available staff and created stress. But it has also highlighted their dedication to do their best to engage with the residents in a personal and caring way – it is a mammoth task and it’s simply love that keeps the place going so well.

Sometimes I hear a criticism from a resident that some activity has been curtailed. I am quick to respond that, under the prevailing staff shortages and stringent hygiene rules, we must expect a little less-than-perfect in all parts of our lives, no matter where we live.

Accepting that reality can be hard; a little discomfort in these times is inevitable and affects all of us as we try to keep in touch, wherever we are, whatever we do…….   

Start again?

When the battery is flat the car won’t start, no matter how good the engine is! In the ‘old days’ it was possible to start-up in three other ways i.e.,

a) jumper leads,

b) push the car (downhill) with a helper, or

c) use the crank handle (remember? – best with a helper, too!).

Getting ourselves started is not always that easy – none of the above automotive methods will work for me, anyway. Well, maybe a push….. We all need a spark, it seems.

In human terms, I believe the technical term for this personal flat-battery syndrome is called ‘lack of personal inertia’ and, luckily for me, I know how to overcome it – most times! I reckon it’s all a matter of the rules I learned at school; I think it was Newton (or was it Archimedes?). Something like: ‘a body at rest is inclined to stay that way unless a force is applied’ and, conversely ‘a body in motion will tend to continue that way until something or other happens’. And both of those definitions actually apply to me, too!

The past few years for most people have been tough, so I can’t claim to have been more sorely affected than others. Yes, caring for a partner with Alzheimer’s at home had lots of stressful, tiring, worrisome times, as many of you know. Even after my wife, Dorothy, went into full-time care at Blue Cross, Box Hill, there was a constant mental tension, almost fear, when I was able to visit. I hasten to add that the management there was faultless from my perspective, and I am happy to endorse it. Now, more than twelve months since her death, I have finally begun to accept my loneliness and have started to find a new way of life.

A big shout-out of praise to all the residents and especially the staff, at all levels and all roles, at all Care institutions! You’ve not only had to contend with staff shortages and lockdowns but also the incredible stress of maintaining the well-being of an amazing range of personal health conditions and personalities! “I dips me lid!”.

As for me, I am aiming to keep walking for at least three Km every fine day, feeding myself with a range of prepared meals and resting when my back hurts! I have nothing to complain about, yet I do! I groan to myself at the petty nature of political discourse but, despite that, I praise my God for all the blessings and support I have received from my friends and family.

So, even if, or when, our batteries are flat and we can’t get started, then perhaps we need use the down-time to pause and literally count all of our blessings. For me, that also means I have to find a way to start my engine and get moving, to stay strong (in mind if not always in body), to be resourceful, and try to be helpful to someone else – that’s my way. It nearly always works……

Special note for Carers!

Are you, as a reader of my story, a carer at home for someone with dementia?

If you are, then you may like to discover and participate in a local project which is part of a study that could bring some immediate benefits to you and your partner. Of course, you would also be adding something to the study of this pervasive and difficult topic of dementia, in a real and mutually beneficial way.

The primary aim of the study is to demonstrate, for the first time, the effectiveness of a 3-month caregiver-delivered, home-based music intervention. It is designed as a short-term study of the behavioural and psychological symptoms of dementia.

This home-based intervention will be compared to standard care and will also evaluate the effectiveness of the music intervention compared to a reading intervention.

The study is for people living with dementia and their family (or informal) caregivers.

You can participate in the study if:

– You or your loved one has a diagnosis of dementia OR significant memory problems

– You are, or you have, a family caregiver

– You live together at home.

Rather than me trying to explain the details, I have provided a link (below) which will explain it fully and invite you to participate.

Because I am now single and not in a carer role, this study/project is not intended for people like me, but it may well be exactly an initiative that you (and your partner) would enjoy and benefit from.

So, if you fit the criteria and decide to join up with the study, it will not only add a benefit to yourselves and your daily life interactions, but also contribute to and be part of a larger, international study.

I commend it to you and invite you join this ground-breaking effort!

Here is the link for you to read (and hear) about this activity and how you can register:

               Australia — Homeside – Partnership in dementia care (homesidestudy.eu)

On the road

Perhaps ‘On the way’ might have been a better heading. But it’s the same thing, really, as we all travel life’s journey, one day at a time. It’s apt for me today, as I return after a time away from home, in country Victoria. It was good to meet up with new folk and to be part of another family, if only fleeting.

When we are caught up in caring for a partner with Alzheimer’s it’s often difficult to have a break, to find a time when at least half your brain can be ‘switched off’. That was the way I was living for several years even after my wife Dorothy was established in a care facility. On edge, expecting the unexpected, is the best way I can describe that emotion. I’m sure many of my readers will understand that tension! Now, almost exactly one year after her death, as I and my family continue to come to terms with her absence in our lives, I still vividly remember those recent difficult years.

Those times still dominate my thoughts, even when I know they shouldn’t. Yes, I do know that the years to remember are all of those happy decades before. And, in time, I will learn to accept that. But, especially just now, I am finding it difficult to let go and live in the present. The recent couple of weeks away from home in the company of a friend and her family were good and I will, in time, relish those memories, too. But today I confess to melancholia.

Dorothy’s adult life was pretty much our combined shared life, and it shaped us – and our children’s formative years. As did our connection to our friends, neighbours, and workmates. But, as my readers will know, travelling the dementia road profoundly changes the present life, and role, of both the sufferer and the carer. Somehow, we learn to adapt, in various ways, to a new changed role and also to a different marriage relationship. For me personally it wasn’t, nor did it need to be, a burden or a chore. With love, all is possible. Our ability to share a prayer never failed us and was a source of strength even when we couldn’t share a church service because our lives were so deeply affected by health-induced stress.

Of all the behavioural difficulties, my ability to manage Dorothy’s new-found stubbornness was the hardest to cope with. Once she had decided, for example, to not get dressed in the morning, nothing would induce her to change from her nightdress. I could usually encourage her to wear a dressing gown and sometimes that stayed on all day! So, I learned a whole raft of cunning diversionary tactics to get around that stubbornness; like making a cup of tea or reading the newspaper or doing a crossword, or colouring a picture together, or just talking about something which caught her interest.

Few things in the activities of all of our lives need, necessarily, to conform to convention or habit, and a valuable lesson I learned was to “go with the flow” on the Alzheimer’s Road. Good advice, I’d say, to all Carers! After all, I will admit to having breakfast in my pyjamas sometimes…..