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)

New Year underway!

Despite the trials and terrors of the past several years, I trust that my readers have also weathered the ‘storms of life’, and Covid, and have moved forward with renewed vigour into 2022. That is my greeting: a Happy and Healthy New Year to you and yours!

Sometimes time flies, doesn’t it? Of course, it’s also true there are times when the days and nights ‘hang heavy’. But, resolutely we will, as always keep moving ever onwards even when the road becomes a bit bumpy at times!

The difference between grief and happiness is time. We all learn that truth as we age. The trick is to accept and use time: for enjoyment, for the creation of happy memories, and to find positive thoughts activities which enable us to live in the moment, certainly not in the past.

A year ago, I was busy and hardly enjoying anything! Frequent, sometimes difficult visits to Dorothy in care dominated my life. Her death last year changed my world and I have, since then, struggled at times to accept the new reality of this different life – now fully alone.

Let me hasten to add that I am so fortunate to have the support of a caring family and friends, and a belief in a loving God. What strength that provides!

Although this web page has been therapeutic for me, I have been considering whether to keep it going (after all, the annual fee was due for renewal!). Then, a few days ago, I received two, quite separate and welcome letters of encouragement from readers! That tipped the scales, and I have decided to keep it going for a bit longer…..

Right from the start I also wanted this site to be helpful to others coping with a partner with Alzheimer’s at home or in care. I will keep that focus but now, also try to add support for those, like me, who’ve lost their life’s partner.

As always, I would be glad to have suggestions for helpful topics. There is a reply option on my site, so please drop me line with any ideas.

Setting off on this next solo phase of my life, I’m aiming to face it with confidence, trusting I will find plenty of ‘meaning’ and reasons for staying healthy in mind and body. This web page might help the mind, but the ‘body’ bit is a bit of a worry! Now, what were my New Year resolutions?……..

It’s gone!

A whole year, in a blur. But, with this year about to end, it’s time to make a new beginning. And to accept the New Year with gratitude and less introspection.

My New-Year motto, which could apply to most of us who feel sad at the tail end of 2021 (for a myriad of different reasons), is “Make it new in twenty-two”. Maybe you will also want to start afresh, to find the positives and the happy things, to resolve to turn the page and get on with it!

After all, today is the last chance we have to enjoy this day and I, for one, will take the next day, each 24 hours, as a gift from God, and relish the opportunity to choose how to best use it. I can predict that there will be days when I don’t do much. Maybe snooze a little, maybe walk a lot or a little, maybe read, or make something, or do something for someone else. But definitely I resolve to not regress to introspection – that self-destructive self-absorbment that leads me into remorse and sadness and, for some psychological reason, extreme tiredness.

I have reached that stage of life where I have discovered it’s OK to take some time to do what is pleasurable, even self-indulgent but……only if it doesn’t diminish someone else’s lifestyle. It’s OK to just sit and read, to watch a movie, do a crossword, or walk, or do the washing, to do something! It’s even better when we share an activity or help someone else, especially a single person, to discover and enjoy their objectives. Because living alone certainly has it’s challenges. The downside of inactivity is not just physical decay, it’s mental stagnation and that’s magnified when we consciously avoid contact. And let me admit that’s something I still do, all too frequently, hence a New Year resolution!

My considered resolution then, for next year, has two parts, the first is to be as physically active as possible each day (but also accept it’s OK to be a little bit lazy). The second part is to work harder to maintain friendships; to make that phone call, visit, write a letter or an email. Good luck, Bill!

I’m still deciding on a third: whether to continue to write this piece for the web. I think it is therapeutic for me, but maybe not much use to anyone else! Drop me line and tell me.

And share your new year resolutions with me, too, if you are game!

Christmas and our gifts

We were all born with a ‘starter pack’ of gifts wrapped in our tiny bodies, many inherited from our forebears. For simplicity I want to mention just three that we all get, despite our parentage! The first is love unbounded, the second is time and the third is grace, all given by God, regardless of our heritage. Usually with the help of parents, its our job to grow physically and mentally with what we have, but importantly and crucially, to develop those three gifts. Most of us do pretty well with the love, some better than others with the grace and, most of us woefully with the time bit!

Somehow, speaking personally, we seem to get ourselves in a mess with time. Allocating the hours between work, family, leisure, study, travel, home, and people, all gets mixed and interwoven to a degree that defies order and discipline. For most of us, that results in messy time-management and, often, resultant disruption to either our personal development and/or our relationships. At least I confess it did to me! Time is like that; it just has to be managed – or the results can be catastrophic.

Unlike love, time is finite (at least our lives are!). Not even one moment can ever be re-lived or recovered. But it does have one, and only one, redeeming feature: time can also be remembered. And if, like me, you have lost a loved one, the remembrance of happy times past can be a simple, private, and personal way to recall happy times, bitter-sweet as they may be. Ah! The joy of earlier times…..they easily outlive and outrank the struggles and heartaches!

Strangely, it’s through love that we best manage our past and present time and add value to our reminisces. As a retiree and a widower without work-life and family constraints, it’s easy for me to find time on my hands. The challenge is to avoid those hands (and heart) ‘living in the past’ and to find ways to ‘add value to the present’, rather than indulging in a melancholic waste of time!

So, my New Year resolution is to ‘turn the page’. After all, I can easily flip back to re-read the past chapters. Currently, as we ease out of Covid restrictions I am remembering and appreciative of the dozens of little joys my neighbours, friends, and family, even Applewood management, have shown to me over the last two years and more. Proof indeed that love trumps time in value!

There has been a tendency in writing this note for me to have been somewhat sentimental, and I make no apology for it. It will be the first Christmas, for almost as long as I remember, without Dorothy. It could be a sad time for me, but I am determined to live by what I’ve written above and ‘to turn the page’. Even so, I acknowledge that it’s also a bitter-sweet time for many others in our community who have also lost loved ones, for lots of reasons, and turning the page is difficult.

Come what may, I can only extend to my readers a wish for a Blessed and Happy Christmas, that it will be a peaceful time, and that you will be renewed and refreshed for a new beginning in 2022.

Why?

As far back as I can remember I’ve always wanted to know the ‘whys and wherefores’. An inquiring mind or a busybody, take your pick!

I suspect that everyone wants answers, but in life’s journey we often don’t find them easily and, when we do, they are sometimes not what we expected. And there are some questions best not asked; some we can ask of a friend or a partner or an expert, and many others we can take to God in our prayers. As we trundle along our life-path some, like me with my new-found solitary lifestyle, can become melancholy, even morose, re-living the past or seeking answers to help us cope with a new and different lifestyle.

Over the past couple of years, Covid-19 has disrupted the world and changed our personal lives forever. During that time many, like me, have also lost loved ones for other reasons. For most of us it has been, and continues to be, a stressful time despite fewer ‘social rules’, and those who live alone may still feel isolated even now as we all try to regain some peace and contentment.

But having an enquiring mind has its upsides, for me anyway. Inquisitiveness pushes me to keep going when all I really want to do is quietly curl up and escape! Sometimes ‘curiosity killed the cat’, and other times I think that ‘ignorance is bliss’. Finding the middle road on our journey is always a challenge – blindly taking the easiest road can lead to extremism – and we can see plenty of that today in politics. The trick is to take neither the easy nor the hard road, but to stay on the middle road, albeit with lots of detours here and there. Even then it’s not easy…. because there are so many other diversions and byways…

And when we have an illness or disability, or a partner so afflicted, or just plain solo, it’s easy to dwell on the ‘whys’ and ‘hows’. We can become centred on the negatives and keep asking the unanswerable questions! It took me ages to even recognise the severity of Dorothy’s (my wife) Alzheimer’s condition, then its permanence and finally, her death. We all need to move on from the past and focus on the present. Travelling along that path I found some other ‘p’ words which have become a guide for me: the reality of the present, a plan for a future, a positive mindset with a different priority; all of which required me to pause and ponder more often. That’s easy to remember, harder to practice!

Many thinkers philosophers and scholarly writers have, over millennia, espoused the concept of a ‘positive mental attitude’. I’ve learned (and keep re-discovering) to stop asking the ‘why’ (and especially the ‘why me’) question/s and have resolved to be more positive, to pause and to pray; only then I can move on with a more peaceful pattern to my life. I must practise what I preach because those p’s are a heap better than the q’s!

Frightened? No!

Maybe just a bit scared! And that was a few years ago now. I used to worry that perhaps Dorothy was scared, too. But I don’t think she was. Even when, so tentatively, I first introduced her to being with others a bit like herself at a day centre, then finally when she moved to a care home, living apart from me. She was, in the main, always calm and at ease wherever she was.

But I was scared when that moment of final separation came. What if the staff are negligent (we’d all seen news items of mistreatment in past times), what if there are conflicts with other residents, what if, what if……? The doubts all but consumed me. Then how was I going to cope, to adjust to not having my sweetheart of decades living with me?

Looking back now, more than three years later and now a widower, I realize just how stressed I was for all the previous recent years leading up to and including her stay in full-time care. In those years there were times when almost every waking moment I was in a constant alert state, watching, waiting, listening, helping, cooking, cleaning, trying to converse, striving to be present, always trying to be loving and caring – no wonder I was always tired! Our children, all married with their own families and living away were always supportive and, with local council help, we managed quite well to stay together in the earlier stages of Dorothy’s Alzheimer’s. Neither of us had ever envisioned being separated, we expected to stay together, happy in our comfortable retirement village until at least one of us died. I didn’t see the signs…. And because, at first, we did cope.

Starting with some home help then later, showering help, then the odd week apart when Dorothy stayed in local respite care, and finally after some nasty falls, blackouts and brief hospital stays, it was time to accept that Dorothy needed more care than I could cope with. And so began the next phase of my “journey of care”.

That meant evaluation visits to nearby care homes, analyses of costs and our resources, seeking opinions from friends, reading brochures and articles, imagining different scenarios. Then the next process of options, of elimination and finally choice. Fortunately, I was able to draw on the advice of a friend who’d recently been in a similar position. But ultimately, I needed the advice and help of a specialist to take me through the financial and paperwork involved with the care home, the government departments, the bank, and the forward planning. It is a daunting task, especially when you are not exactly rich, you’re ageing, confused, tired and bewildered, just as I was!

But take heart, dear reader, with the right help it is possible to travel that journey of care even if it’s a long road and not without some rough patches. I can only strongly recommend you seek some expert help, as I did, to negotiate the landscape because I was scared when my wife’s condition was finally diagnosed and I did get lost here and there along the Alzheimer’s way!

Thank goodness I wasn’t personally alone or lost very often – I have my faith, I have my family, my friends and neighbours and had an excellent care home where Dorothy spent her final years. All that remains now is for me to accept this new phase of life, to be thankful and strengthened by the years past and to look forward to seeing our family grow. Somehow, I always seem busy with no time to be lonely or frightened; well, not often anyway!

Remember when?

When I started to write this piece, I had no intention to reminisce – but, as my thoughts scrambled around, they began to lead me back to when I was about seven years old (can’t remember much before then). They were war years; Dad was working in an ‘essential industry’ delivering fuel – kerosine in four-gallon cans for home use, and big drums for others, and Mum was a home-body and, as well as looking after we three, also had the care of my grandmother who lived nearby.

I guess it was our recent lockdowns that started me thinking about those early years of my life – in a little four-roomed weatherboard and fibro house at The Basin (remarkably it’s still there!). Even the town name seems strange because although it’s part of the Dandenong Ranges it isn’t really surrounded by mountains. Never mind, that was my hometown, with Poulter’s General Store, a sizable Progress Hall, my Sunday School (where I started my long Christian journey) in a tiny room in the big Presbyterian church opposite the Bus depot, and my Primary School a mile or so down the road. It was several miles to the Boronia railway station and the local bus was an important service because there were not a lot of cars about (in those petrol-rationed days some even had weird ‘burning ‘gas producers tacked on the mudguard!).

My best mate and I sometimes walked all the way to the cinema opposite the Boronia railway station when, as a special treat, we were allowed to go to the Saturday arvo matinee. Being wartime, there were no night shows anyway, and we kids loved the cartoons and marvelled at the Newsreels of ships and planes and bombs and terror that was happing everywhere in the world, or so it seemed to us. Even all the windows of our house were ‘blacked-out’, the bedrooms permanently, the other two at dusk. We kids had special air-raid drills at school and I can recall helping to collect scrap aluminium pots for the war effort. We had a battery radio for news, no AC power then, with just kerosene lamps and battery torches, and Mum and Dad even had Ration books with coupons for food and clothing.

It seemed only natural and necessary that Dad would dig an enormous ‘pit’ in our quarter acre block, which became our never-used air-raid shelter! Our house was on a slope and the easy access to under the chimney base gave us a ready-made safe place to store our emergency rations: eggs that Mum covered with preservative ‘waterglass’, jars of beans (took ages to slice the beans and layer them with salt) and other sealed jars with flour and sugar and preserved fruit, and more…. we could have survived forever! There were always some vegies growing and it was often my job to help dig up the potatoes and carrots and swedes, and to cut-off and carry in the enormous pumpkins, and the pea and bean crops; there seemed always a job for me, including carrying wood. How I wished then that I had a sibling to share the load but, in the long run, it did me no harm; in fact, it helped me to appreciate the value of ‘work’ and interdependence, maybe resilience.

Our toilet, of course, was a tiny backyard hut with a little trapdoor at the back where Dad could remove the can to bury the contents deep, every so often down the back but not too close to the lemon tree! The laundry/bathroom was a separate shed, somehow tacked-on and partly under the back-door ramp. In it was a huge copper tub with a wood-fire under (I loved that job, tending the fire to get the water boiling). There was no shower, just a huge, galvanised bathtub we all shared, me first (privileged, indulged child!). And alongside the copper were two joined concrete troughs (later with a handwringer between them) and a wicker basket to carry the heavy wet washing out to the clothesline, strung between the gumtrees, propped in the middle with a forked tree branch!

What a lot of changes there have been in our lifestyles since those days!

……… See, my own dear children, I DO remember things, nothing wrong with my memory, yet…….