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…..  

Off we go! Part 4

As Dorothy’s behaviour became increasingly unpredictable, living together was becoming difficult, but possible – until after an unexpected fall within a couple of metres of me as she followed me from our bedroom. I heard the thud and wheeled around to find her in a heap on the floor, totally unconscious! She wouldn’t, indeed couldn’t, respond to my entreaties to wake up and an enormous lump on her forehead was swelling before my eyes, where she’d hit her head on the doorframe on the way down. I had to call for an ambulance, again; not the first and, as I discovered, there were to be a few more over the ensuing months.

We had both been in really good physical health all our married life. While I was the breadwinner and progressed along the managerial road with a large international food company, Dorothy was the real homemaker who nurtured our children and fully participated in school and Church affairs and activities, as well as maintaining friendships with her old school and work friends. She was tireless!

Back in those early days of our marriage (gosh, that’s well over sixty years!) and with some help from my friends, I had designed and owner-built a modest three-bedroom home on a residential block in an unmade road which at that time had only four other houses. Not too far out of Melbourne, in a newly developing suburban area on the fringe of the city. Yes, water and electricity we had, but no sewer and no phone lines! When Dorothy came home with twin boys as our first-born, it was all hands to the pump to finish the house – plastering and paintwork, and some paving, especially a path to the outside thunderbox toilet! The years rolled by, more work responsibility for me and a second job to keep the pot boiling, more children and a bigger house needed!

Dorothy was a superb mother and homemaker and a loving, caring wife. Fully engaged with her ‘Young Wives Group’ and playing a fortnightly ‘hit and giggle’ social tennis with a group of friends. As well as often managing to help others we knew with their domestic problems, she somehow managed to keep us well-fed, well clothed, and happy. Dorothy’s parents lived in country Victoria and we all enjoyed visiting them as often as possible. Our kids just loved the farm, the animals and the fruit grown on the property but, of course, the four-hour car journey was the least-loved aspect by us all! But once there, we all enjoyed the time, and developed a strong bond with her country-based family.

Myself as an only child whose mother died when I was fourteen, had only my dad, whose job as a Myer delivery truck man, seemed to frequently have ‘deliveries’ (mostly treats for all!). The neighbours (by then) must have thought us spendthrifts! It was only a short journey to visit him, but when he decided to remarry and move interstate or visits were less frequent, but always full of fun.

As our children grew, they progressed through the normal hurts and falls, they crawled, walked, and ran, explored other half-built homes, and played in the mud! They all rode bikes, too, and suffered the usual range of bumps, scratches, cuts, and bone cracks as they grew towards being big kids! Dorothy’s early fitness routine included pushing a twin pram up and down those unmade streets to do the weekly shopping! Way back then, her behaviour and health were never in doubt, and her energy limitless, as was our love as we ‘grew’ our family…..

Off we go! – part 3

So, here I am now living alone and recalling some more of the early symptoms of Alzheimer’s that I saw developing with Dorothy…..

Like when I spotted her putting an empty saucepan on the switched-on hotplate! And there were so many other, sometimes humourous, sometime scary incidents, such as when she filled the electric jug to the very brim to make two cups of tea! Or when clearing the table after a meal – when everything, pepper and salt included, went in the refrigerator! At times, it was like a mystery tour to find things that were put away in strange places.

Another behaviour was to repeatedly talk about the same person or topic all day. Which meant that, despite the repetition, I needed to listen and process everything said, because it could unexpectedly indicate a change of her mood or actions.

If you have experienced even something of that behaviour with your partner, you will understand how the unpredicted activity can become, not only sad, but annoying and debilitating – and it can seriously affect your ability, as a carer, to think clearly and proactively. Being alert (but not too alarmed) and ready for anything, seemed to be the mantra!

The constancy of Alzheimer’s and that relentless need for vigilance makes it near impossible to plan ahead – or sometimes to even think straight! Ordinary, otherwise normal living skills often become complicated and difficult, for both partners! It can become a major undertaking to simply make a shopping list. Or to remember what it was I planned to do after breakfast, or that night, or when that next appointment is (or was!). ‘Did I hang out the washing?’, and ‘How will I dry the slippers she wore in the shower this morning?’ etc., etc.

We loved each other dearly, and happily enjoyed each other’s company and shared so much joy, and some sad times, during our married life. I must admit though, that in those last years, the changes in Dorothy’s life patterns were accelerating and sometimes unnerving. They were ‘getting at me’, like a constantly dripping tap or a squeaky door hinge. I was constantly tired physically and (shock horror) becoming grumpy!

Earlier, at the time of Dorothy’s mental health assessments, the various doctors and experts involved had explained the extent of her condition and the sort of behaviour patterns I could expect.

So, I had been warned, and even though I knew she would be erratic and unpredictable, yet I doggedly held on to my inbuilt denial that there was any serious change, for a long time. Our kids could see it, and it’s easy for me to see now, in hindsight!

Off we go! (Part 2)

I quickly learned that Alzheimer’s is a progressive disease, and the rate of progression is variable and, at times, patchy. Just when it looks to be hardly an issue, it can catch a carer unexpectedly! In Dorothy’s case, it seemed to progress slowly at first. Then, when I was becoming complacent and coping well (for the most part) her behavioural changes became more frequent, indeed accelerated, and quite diverse! Those mood changes often fooled me because they were interspersed with flashes of her earlier complete lucidity and capability. It’s a tricky time and it needs vigilance, patience, and tolerance (also love, and….lots of other sometimes scarce attributes!).

How could those changes bolt ahead so quickly? But they did, and there was no turning back. We had begun the long dementia road together. Our lives had been changed and our interactions with family, friends and shopkeepers took on a new perspective. Like so many others before us (and with us!), we began our new life journey along a rough road to an uncertain destination……

Now, a long way down that road, and with Dorothy’s death last April, I will continue to chronicle some of the times we shared in her later years, in the hope it just might be helpful, even if only to one person, to know they are not travelling alone, and life really does go on, despite Alzheimer’s disease having changed Dorothy’s life, and mine, forever.

I remember in those early dementia days how Dorothy staunchly resisted allowing me the freedom of the kitchen – that was her territory! As part of a farming family, she’d been used to country fare and inherited her mother’s flair for good home-cooked meals. Dorothy was a superb cook, and I am living proof of her culinary skills.

But I recognised that in the more recent years of her Alzheimer’s, after cooking for us both, and five children from birth to adulthood, a new household hazard was emerging. The risk to her of burns, cuts (and possible strange food mixes!) could easily have become a nightmare, not to mention the spoilage of food and damage to kitchen gear. Some things just had to change!

Fortunately, our children had long ago all married and fled the coop. With only the two of us left at home and with Dorothy’s home skills fast slipping away, it was time for me to become both the home manager and her carer. No choices. I needed to manage everything for us both, ready or not.

Home help for hygiene and cleaning was the first move. (To be continued)

Off we go! (Part 1)

One of what became early signs of Dorothy’s dementia was her reluctance, although rarely, to get out of bed in the morning! It was so out of character, and I would ask her if she was unwell, or “going down with a cold”, or a similar query. Invariably, and fortunately mostly, her reticence quickly dissipated without further ado, and we went on with the day. Another unusual behaviour was for her to keep repeating stories and incidents from the past, again and again. Yet another was to open and shut cupboards, wardrobes, and drawers, clearly looking for something. Upon my enquiry, it might have been socks, or slippers or a jumper. Then I would gently remind her that she was already wearing them! Many times, behaviour like that resulted in us both having a giggle. If I had only realised, back then, it really wasn’t a laughing matter.

All of us, at lots of times, become forgetful. So, it seemed at the time to not be unusual, and I’d gloss over ‘our’ silly, infrequent, lapses. It’s normal, isn’t it, to forget where something is, or some planned activity? As a rule, such lapses are so inconsequential, and we are quick to forgive and move on. Just as I did – for a while……

But over time, I stopped laughing and overlooking, and began to recognise those memory lapses were too frequent and they became increasingly worrisome. Constant forgetfulness wasn’t just a joke.

I had sensed, of course, for some years that Dorothy had been changing in other ways, too. Word games, crosswords, and her lifelong love of the card game cribbage, were all becoming confusing and beyond her ability. I knew our children were aware of Mum’s different behaviour long before I would admit it.

I talked to our GP (Doctor) who understood my concern and promptly arranged for a raft of comprehensive tests at a specialised external centre.

Dorothy, in her usual good-natured way, happily went through that series of examinations, including her driving skills. She retained her relaxed and placid nature throughout all of that day-long procedure, but the results confirmed the diagnosis. She had failed all the relevant tests and then, without demur, even surrendered her driver’s licence. That day was more stressful to me than to her!

Of course, it was in clear sight right under my nose, but until that day I didn’t want to believe or accept it. After all, she’d managed for all those years, safely and expertly, to bring up a family and a husband, with hardly even a cut finger or a burnt saucepan!

Now it was confirmed, Alzheimer’s was the diagnosis. I could no longer be sure of her safety with anything, at all times, night, and day, here or anywhere. But surely, all I had to do was to arrange for home help? Indeed, that certainly was the first step.

(….to be continued)