Dad’s Story Living with dementia

STORY BY MARIANNE KRESSE

My life and that of my family over the last few years has changed dramatically and all because of two phone calls. The first was at 5.47am on Saturday 22nd November 2014 notifying us of the death of our much beloved mum. The second happened nearly a year later at 8.43pm on 16th November 2015 from the Hervey Bay Hospital telling us that dad had had a bad fall and was being admitted to hospital. He’d been alone and unconscious for several hours before a neighbour had found him in the back yard.

Unexpected calls at unexpected times always set your heartbeat racing, but when you have elderly parents that live over 1,200 kms away those calls cause an even greater dread. Mum’s passing set the family along the path of grieving, but dad’s struggle and decline through dementia has been our family’s most difficult, frustrating, sad and challenging issue yet.

Dad’s memory had been fading for a while even before mum’s death, with mum always saying that they made a great pair- she had the brains while he had the legs. Mum had been in a wheelchair for the last few years of her life and although this restricted her lifestyle she was still very bright and connected even at 86. Not so obvious was my dad’s steady loss of memory. From little things such as forgetting where his car keys were, to driving all the way to Maryborough for bread and coming home with everything but, dad’s lapses were managed with humour and perhaps a little frustration.

But with mum gone, dad’s routine of taking care of her in addition to the grieving that goes with the tragedy of losing someone you have lived with for more than 57 years began to take its toll. When it became apparent that perhaps dad was not taking as good a care of himself as he was telling us, my sister and I with our partners, made the difficult decision to leave the security of jobs and homes in Sydney and move up to Hervey Bay to take care of him. At first our care was only moderate with us mostly looking, but not interfering, by doing simple checks on things such as ensuring he ate and took his medicine daily. A good way to follow this up with subtlety we found was by inviting ourselves to go shopping with him, checking his freezers and pantry regularly and watching how much trash he threw out. Garbage is always a good indicator of activity. Slowly over the first year we could see his lapses but by the end of 2016 and with another fall that saw him again in hospital it became apparent that he could no longer live on his own.

My sister and I then decided to roster ourselves in two week stints, with us living with him… watching over him, but endeavouring to let him go through his daily duties without interference. Our company was a welcome thing…. at first. But as time progressed dad started to forget more and more things. The more we prompted reminders for him to make himself breakfast, take his tablets or feed his dog, the more he retaliated, the more he began to ignore us and the angrier he became at us for as he stated ‘taking over his life’. He was becoming that 16 year old adolescent, constantly rebelling with an anger and frustration that became quite wearing. For although we could see his confusion, feel his anxiety and see the waving of his angry fist quite regularly as he began losing more and more of his memory, he still did not recognise or admit that there was a problem.

Unfortunately once things are lost they are very difficult to recover. Losing one activity quickly rolls onto losing another until before you know it, nothing is as it was. Dad’s decline over the last half year in particular has been quicker than expected and has left us quite unprepared for its outcome. Dementia is a dreadful disease that sees concise active minds lose their logic.

It creates a confusion and communication breakdown that steals vocabulary and often leaves its victim quite lost and frustrated. It slowly steals the essence and memories of the person you love, the most recent ones often being the first to go. As such it is a very difficult disease to watch and deal with if you are the loved one taking care. Little actions such as my sister starting to feed the birds some bread triggers new memories and actions in dad that make no real sense. It is not unusual to find dad sitting in his chair in the lounge room feeding his German shepherd by tearing up pieces of bread and throwing them at her as if he were feeding the birds. And although it is quite amusing to see his dog patiently sitting by his feet with bits of bread covering her head and body, there is also a sadness… a sense of loss that is heartbreaking.

Each day, no matter how hard we try to maintain routine, dad loses another activity from his daily schedule. When you remind him to make breakfast, he will look you in the eye and sincerely state that he has had it. But he is remembering another time, another day… and the memory to him is so real that he does not feel hungry. When you explain that he cannot have eaten because you count the number of slices left in the loaf of bread several times throughout the day he looks at you as if perhaps you are little bit crazy. And maybe we are…. There are certainly days when we feel out of our depth and just as confused and frustrated as he does.

With most of his daily routine now forgotten, dad now spends his days happily and actively ‘fixing things’. It is difficult not to shiver when you hear those words, because for dad they mean a day of unplugging everything in the house from the kettle and toaster, to the phone, side table lamps, computer (and it’s every data cable), his electric chair… the internet router…well you get the idea….he unplugs EVERYTHING. And naturally he has not associated the fact that without power, electrical devices do not work, so when he goes to turn on his lamp or computer and it does not work, he has conversely justified his need to ‘fix things’ and therefore spends the rest of day trying to work out the problem. We plug everything back in and he again unplugs it. This unfortunately has become our daily routine. ‘Fixing things’ and now ‘Sorting things’.

‘Sorting things’ is not necessarily as disruptive as ‘fixing things’ because we do not loose phone or Internet connections, but it can be equally as frustrating. ‘Sorting things’ has become a process of dad collecting all manner of objects and putting them in a special place. Last week we had a half an hour discussion on how he could now sit down and relax, because everything was now sorted. When I asked what ‘everything’ meant, he looked at me in all seriousness and said.. ‘You know stuff…’ Pushing him a little more because ‘stuff’ really gave me no hint of what mischief he had been up to, he waved his hand as if humouring me and said logically that, ‘all the black sticks are now in the one spot!’ Satisfied with his explanation because now everything was ‘all clear’, he sat down to have his lunch. It was an hour later when he wanted to watch TV, that the meaning of ‘all the black sticks’ became apparent as an hour search for the TV remote became the afternoon priority. On searching all of dad’s drawers I finally found the TV remote alongside the stereo, video recorder, Foxtel remotes as well as several old cordless phones and a few current ones. There was even his computers mouse and the white air conditioner remote. When I showed him where I had found the remote, he looked in the drawer and ‘tsked’ in frustration, but only because of his error of sticking the white air conditioner remote amongst the black ones….

My dad will be turning 90 next March and it is difficult to see where the future lies. My sister and I although not trained in dealing with dad’s condition, feel the strain of understanding and coping with his new foibles each day. We are not perfect and definitely do not have the answers to every challenge that dad throws at us on a daily basis, but we try. Thank goodness we have each other, because trying to take care of dad and his declining mental and physical state on our own singularly would be nigh on impossible. We will be doing all we can to ensure that dad spends the rest of his days in the comfort of his own home with the company of his beloved German shepherd. But if you happen to see two dazed and possibly drooling 50 odd year old ladies who look like sisters, wondering around the streets of Hervey Bay muttering incoherently about ‘black sticks’ or ‘fixing and sorting things’, just smile and give us an encouraging pat on the back. We know things will in all essence only get worse, but a smile of encouragement goes a long way to making things easier.