Alzheimer’s – My Story

Song – ‘Its a long way to Tipperary’ by Roger Bellon

Three sisters were sitting on chairs in a doctor’s surgery. Their 75 year old mother was sitting in front of them to the side of the doctor’s table. A young, handsome, full-faced doctor sat in a swivel chair. The room smelt strongly of a sweet and spicy aftershave. The young doctor turned to face the mother and in a quiet, low-toned voice said, “Mel, I have the results of the tests we did last time you were here, the MRI and the counsellors’s report. The conclusion is you have Alzheimer’s Disease”. The elderly mother said just one word, “Yes”. The three sisters sat silently, tears streaming down their faces as the word Alzheimer’s confirmed what they had suspected.

This is a familiar story for far too many people.

Well, that was my mother. For years, my sisters and I had observed some of the early red flags – the forgetful moments, lack of wanting to socialise, the lack of emotion, a loss of self-awareness, needing written reminders. But with that diagnosis began a road of hard decisions, highs, lows, tears, anger, frustration, guilt and sadness.

My sisters and I decided to share Mum’s care as we knew she would not want to go into aged care. My eldest sister had Mum the most but between the three of us, we juggled Mum’s care. It was not easy. Both my sisters had grandchildren they cared for, work and life commitments. I was working, running my own childcare centre and still had teenage children at school and university. Somehow, we eventually got into a bit of a routine until my middle sister had breast cancer and needed a mastectomy, radiation and chemo. Then her husband was diagnosed with blood cancer. Life was very difficult.

Initially Mum had a variety of activities that kept her occupied and stimulated. Some days on a farm, some days sewing and other times with me at my preschool. We managed the early years ok but as time went on, she became more difficult to manage and began to decline, particularly with her self-care ability. She went through the stages from anger, suspicion, delusion (she was convinced my late father was on a war ship on his way home) swearing and wandering. She wouldn’t shower, and if left to dress herself, would wear the same outfit every day. She had a few falls and was needing constant supervision which was not always possible.

We took Mum back to see the neurosurgeon and he praised us girls for giving Mum extra years with family care, but suggested it was now time for Mum to move into aged care.

We were devasted!

The search for a suitable aged care facility began. Eventually we found a place and convinced Mum she was in a holiday resort. On Mum’s first day in ‘The Resort’, we left crying and feeling so guilty – even though we knew it was the best choice for Mum.

Initially in ‘The Resort’, Mum would pack her bag to go home each day, she even managed to escape twice. She somehow crossed a busy road and made it to the local shopping centre. A security guard noticed Mum wandering around the centre without even a handbag. He took her to his office and remarkably she could recite her old address and telephone number. We eventually found Mum and took her back to ‘The Resort’.

Life for us was a little less complicated now with Mum in aged care. One of us still took Mum out on most days, we took turns at visiting her and joined in family activities at ‘The Resort’ and included her in any of our family events. My sister continued to help out in between her own health treatments.

When any of us would arrive mum was always wandering. She carried her handbag, crocheting (which she could not longer do) and bits of Dad’s war memorabilia. She would just walk and walk for hours.

By now she was very quiet and placid, she rarely spoke. However she was actually in very good health other than swallowing had become a major concern so she was on a soft-food diet.

Some days things were so absurd, you just had to laugh. We often drove Mum past her local RSL club. The cenotaph was at the front and seeing it would always spark a reminder of my Dad, who was a Digger. One day it was raining and Mum said, “I hope your father isn’t getting wet!” Dad had been passed away for many years but I couldn’t help myself and said, “Don’t worry Mum, Dad is well and truly under cover!”

For me, one of the saddest days was when Mum didn’t recognise me. We were driving to meet my sisters for lunch. I asked Mum what was my name. She wouldn’t answer. I said, “I’m your baby, Kim”. Mum began yelling at me, saying “You’re not Kim! You’re not Kim!” I regret my response but I yelled back at her, crying, “I AM Kim!”

The most remarkable incident was when Mum was sitting in the hairdressers at ‘The Resort’. She was looking at herself in the mirror and one of the staff members walked passed and saw me there with Mum. She came in and said, “Do you know your Mum loves to sing?” She started singing “It’s a Long Way to Tipperary'” Suddenly, Mum joined in and sang the entire song, word perfect. We were amazed as by now, Mum rarely spoke.

There were so many incidents that occurred during those years my sisters and I could easily fill a book with anecdotes.

Mum lived in ‘The Resort’ for 6 years until she had a fall and became bed-ridden. We moved her to a high-needs care facility but by that stage, it barely seemed she noticed the move.

High-needs care opened an entirely different chapter. We could no longer take Mum out and it was like role reversal. We were now the mothers. I would often go at meal time to feed her. I’d put on her bib, feed her pureed baby food and give Mum thickened water from a sippy cup then wheel her outside for some sunshine in a giant padded bed on wheels.

In high-needs care the worst part was the unexplained bruises and cuts on her arms or hands sometimes needing stitches. Her hands were so tightly clenched that wads of cotton had to be placed in her hand to stop her fingers gouging into her palms. She was withering away before our eyes.

To move her and shower her it was done using a rubber mattress attached to an hydraulic lift. I know this terrified Mum as she would make whimpering sounds when they started to lift her.

Luckily I lived only minutes from the new high-needs facility. After calling in one day to find mum sucking on her sheet and finding out another patient had poured orange juice over her head, I popped in often just to check on her.

The only stimulation now was visits from us three girls, the sounds from the TV (Mum didn’t watch it) or reading bits to her from a magazine. One day I was with her watching Dr Oz. I told Mum I was trying to balance on one foot with my eyes closed. I fell onto her bed and she actually giggled and I thought “Is she still in there somewhere?”

When Mum was close to the end, she would just lay in bed and stare. One day, I showed her a photo of her parents. To my surprise she said clearly, “That’s my Dad.” The nurse in the room couldn’t believe it, as she had never heard Mum speak.

Her final day came suddenly. I got a call early one Saturday saying Mum had an ‘episode’ and needed oxygen. I went straight over, Mum didn’t seem right. A nurse who I had never met said I should go home, Mum would be fine and probably sitting up eating again by tomorrow, which I found odd as Mum didn’t sit up to eat.

My gut instinct was to stay. I phoned my sisters and said that they should probably come to Mum. Over the next hours, Mum’s extremities began to get really cold. A few hours passed. We played quiet music, we comforted Mum telling her that Dad, and her Mum and Dad were waiting for her. We talked, we laughed, we cried until Mum took her last breath.

We stayed with Mum for a while longer, us three sisters sharing a bottle of wine which we drank from plastic cups, kissed Mum, said our final goodbyes and left Mum for the last time to finally rest in peace. We didn’t cry now as we had cried so many tears over the years. It was a relief to know Mum was now where she belonged. In total it was 11 years from diagnosis of Alzheimer’s until her peaceful death with family beside her.

We all sang “It’s a Long Way to Tipperary” at Mum’s funeral.

So my conclusion from this story is that I will do what I can in the coming years to spare myself and my family from living through a similar scenario. As Baby Boomers, the statistics already show that many of us will need high-needs care and many will succumb to some type of dementia or Alzheimer’s.

I am committed to doing what I can now to give me the best possible outcome from this non-curable disease.

My next blog will delve into what small steps we can take now to attempt to keep dementia away, if not forever, for at least as long as possible.

I know my story resonates with so many. Please share in the comments your experience with dementia or Alzheimer’s. My empathy and thoughts are with anyone who is dealing with a loved one with this disease.

Let’s hope our fantastic scientists discover a cure before many of us Baby Boomers go down this sad and unpredictable road.

Songs- ‘Over The Rainbow’ by Billy Thorpe and the Aztecs.

Till next time, “Keep on Rocking and Rolling”.

Kim