Sunday 18 March 2018

The day we finally realised our wonderful mum had Alzheimer's

Joanne Hunt recalls how signs of her mother's illness were there long before a diagnosis

Joanne Hunt

It was 1996 and the family was in Australia for our brother's wedding. One afternoon, not one to sit still, our mother decided to go for a walk.

When a while later she hadn't returned, we branched out to find her quite a way down the beach. She seemed confused as to how she ended up there but also bemused at our concern. She was just 63.

This was a time when threads might have started to come together but surely getting a bit lost in new surroundings wasn't that unusual?

As a retirement treat in 1999, our parents signed up for a trip to the Holy Land. Out of her surroundings and in the clamour of group travel, Mom was lost. The coach would stop for a loo break. My father describes his confusion and impatience waiting outside for her. She was equally confused inside -- confounded by the queues and the clatter. With her usual humour and self-effacement, she'd brush it off and plough on.

In retrospect, we know each of us had been minding her a little bit more in the preceding years -- without realising it, naming it, or even conferring with each other about it.

On a shopping trip in Dublin, Dad and I hopped on an escalator -- as we ascended we looked back to find her utterly bewildered by the first step, having no idea of what to do to follow us.

Often forgetting her purse, her gloves, her scarf, we colluded with her in making nothing of it, not wanting to admit that it was anything more than absentmindedness. Or more often than not, we probably chided her for it.

Anyway, a bit of forgetfulness was just something that happens as people get older, right? In fact, our mother's mother was 'doting', or prone to 'rambling', as it was put in those days. There was no name for it then.

Over time, Mom's reactions were changing too. We can recall telling her some bit of news; always so praising of our achievements, she'd seem nonplussed and we'd wound like children when news excitedly saved to tell was met with seeming indifference. This was not our mother's way.

We piece these things together with hindsight. It seems obvious now that something wasn't right and we must sound negligent for not acting sooner. But this disease is insidious. Its early symptoms are hard to pin down and difficult to articulate. It creeps in and takes root in the stealthiest way. It slowly steals a person away from their family and away from themselves.

Diagnosis at last in 2001, the year her seventh grandchild was born. Having explained the symptoms to our GP, he referred her for cognitive tests and a brain scan. The scan showed tangles of plaque that were damaging memory and impairing judgement. It was dementia, most likely Alzheimer's disease.

There was some relief in having a label for it. Medication might at least slow down the disease, though not halt it. But with diagnosis also came guilt -- at having been impatient with Mom for wandering off, or asking the same question over and over. She must have been so confused by what was happening to her. Our lack of understanding can't have helped. We were as confused as she was.

Physically her formidable work ethic wasn't diminished. She had made brown bread and sponge cakes for all and sundry almost every day of her 40-year marriage. But once-familiar recipes were now producing ever more variable results.

Feeding calves, setting a fire in the hearth, offers to babysit her grandchildren -- these things had to be gently overseen and ultimately negotiated away. There were rows and tears on both sides.

Mom had driven the two-kilometre distance to daily Mass thousands of times. This much-loved routine also had to end, marking a real loss of her independence.

Alzheimer's can be hard to navigate outside the family too. Forgetting the names of once familiar friends or leaving her purse in the church for the umpteenth time; at first these things registered as embarrassments and our instinct was to gloss over them to protect her.

Neighbours and friends can become an invaluable part of the safety net for a person with Alzheimer's. Putting them in the loop early makes sense.

While some things have been tough, thankfully we didn't have to deal with many of the more difficult symptoms that Alzheimer's can bring, such as sleeplessness and rage that must wear families to a thread.

Now, about 14 years after the first symptoms took hold, any contrariness is gone. Her needs are for help with eating, washing, getting dressed and going to the toilet, and in a way, this is easier and less emotive to deal with.

There are moments of unlikely hilarity too. Helping her to shower, she'll declare that we are her cruellest afflicters. This is completely unlike our mother. Tending to everyone else all her life, she would have been disproportionately grateful for any help. She spoiled each of her seven children and smiting us for our efforts now, we'll collapse into laughter at how unlike her this is.

While she might not remember our names, if you sing 'Carrickfergus' she'll close her eyes and mouth the words in perfect time. A bar of the 'Hucklebuck' and stiff limbs will transform and she'll hop from foot to foot. That's miraculous to see and reminds us of her.

Dad is her primary carer and at 75 deserves a medal. Always a man of action, more used to a busy outdoor life on the farm than being tied to the house, he's a paragon. When we've buckled, he holds fast at wanting to keep her at home. The whole family is involved in whatever way they can be, though with some living closer to home, they are doing the lion's share.

Two sisters, a brother and sister-in-law juggle their own work and families and provide as much support as possible. The four of us who live away from home do weekends and days where they can. Relatives and neighbours are wonderful and Dr Murphy, our truly excellent GP, is on standby.

There is support available too, once you know where to find it. Until recently, Mom was able to attend the Alzheimer's Society centre in Adare, two days a week. Helen, one of their carers, now looks after Mom for a few hours each Monday. This help gives Dad a much needed break.

The HSE has also given practical support, providing the capable Marie, who comes five days a week to help get Mom up and put her to bed.

The district nurse visits regularly and has arranged occupational therapy and given us a modified bed, a chair, wheelchair and other aids.

Overall, dealing with Mom's disease has taught us much. As a mother, she was our caretaker and now the tables have turned and we're learning to give this care back. Maybe this is her last gift to us. She's teaching us a final lesson in compassion. She's spending her store on us, pouring every bit of her away until it brims in us.

Irish Independent

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