The Silver Lining of Dementia

Dementia is a cruel disease. It is one that many of us here feel a sense of anger and injustice towards. Over the last few years, the Traynor family have witnessed the slow deterioration of our family matriach, the once unstoppable Pat Traynor.

Dementia slowly changed our Nanna Pat from a fiercely independant, outspoken, opinionated and driven woman. She gradually became more dependant on her family, losing her ability to clearly communicate and towards the end, it seemed as though she completely forgot the person she once was.

Rest assured, her family and all who knew her will never forget.

But for every situation, there is a silver lining if you look hard enough. And the silver lining of dementia, is that we had the chance to care for Nanna Pat just as she cared for all of us over the years of her life. Nanna raised her large family, providing loyalty, unconditional love and an unfailing presence of support and encouragement. Over the last 5 years, the Traynor Macgrath families traveled the journey of Alzheimer’s disease by Nanna side, remaining loyal, loving and supportive until the very end.

They say it takes a village to raise a child, and Nanna Pat was the head of our village. And that village had the honour of caring for her in these last years. As she lost her independence, it became clear she needed more than just her a daily check-in.

To honour Pat’s love for the home she had created and to give her as much one-on-one care possible, Pats beloved daughter Carol made the massive decision to stop working and move in to care for her mum full time. Carol has been by Nannas side through every difficult day, and although it was heart breaking, Carol drew the strength to be the one beside her mum when she left this world last Wednesday.

Nanna Pat had made it clear that she didn’t want to spend her final years in a care facility, it was her desire to be at her home in Fairy Meadow for as long as possible. Thanks to Carol, this was possible. Carol was supported by her brothers in the ways they were able, and so I really want to make a toast and share some words on the remarkable way Pats kids cared for her and in doing so, granted her the dignity of being in the home she was familiar with.

I had the privilege of being able to spend quite a bit of time beside Nannas hospital bed in some of her last days, and one afternoon last week Carol and I were discussing the well known book The Five Love Languages. The book talks about the different ways people express their love, and I’ve had the honor of witnessing Pats family express their love for her through their actions as her health declined.

On Friday the 13th of September, we were expecting Nanna to come home from hospital. My husband and I spent the morning at Nannas house, awaiting the arrival of the hospital bed that was to be delivered that day. Instead we got a heartstopping call from Carol to say that Nanna wasn’t coming home.

We quickly gathered up some comfort items to create a homely feel to the hospital room, and as I was packing the car with Nannas favourite plush blanket and some soothing cds, my uncle Mick arrived at the house. He was there to fix the clothesline.

This is such a typical Mick thing to do. He’s always been so committed to helping maintain Nannas house since our Pop Cliff died more than 26 years ago. Mick has mowed the lawns, done countless hours of painting, and when we visited Nanna it was not uncommon to find Mick fixing the kitchen cupboards or sorting out a problem. There’s no question that Mick shows his love for his family by his acts of service and his practical support, right until the very end.

So a toast to Mick – who always gets the job done.

Second born is Stuart, my dad. He’s in England right now and we’re missing him so much. Stuart is one who really values quality time. You know he cares about you by the way he makes time for you. Stuart moved back to Wollongong only in the last 10 years, and often said that he was glad to be closer to his mum in these difficult years.

He thoroughly enjoyed Thursday night dinners with Micks family and Nanna and whoever else in the family was around that week, and told me with great sadness when Nanna was no longer well enough to attend their weekly family dinners.

Instead, Stuart started to collect Nanna Pat on a regular basis and take her to the frat for lunch or a coffee. Our last visit to the Frat for afternoon tea was one I’ll never forget, with Nanna pouring her cup of tea on the floor when she was finished with it, horrifying my clean-freak dad. He brought her into the games room where she played the most remarkable game of air hockey with my two year old daughter. These are memories we’ll always treasure.

So to Stuart, who always made the effort to spend quality time with Nanna.

I’m going to skip the birth order for a second as I do want to toast Carol last.

So now to Ian. Ian has the remarkable gift of hospitality, in that you never feel like a stranger to Ian Traynor. He makes everyone feel at ease and as though they are his mate. He would walk into the room and greet Nanna so warmly “Hello mother.” Ian’s daughter Roslyn shared with me a fantastic story about the final time Nanna went to stay at Ians house, which was Christmas 2017. Nannas dementia made her so unsettled and uncomfortable, which could be really hard to manage and keep her from feeling distressed and agitated. This is contrary to how Ian wants anyone to feel, let alone his own mother, so to keep Nanna busy, Ian got out all the plates from the cupboard and asked if she wanted to wash them up. He said she was so focused on what she was doing that she washed them twice then went looking for more. I feel that this is such a typical Ian story, anything to make her feel at home. Even washing already-clean dishes.

So to Ian – for finding unique ways to keep Nanna preoccupied and calm during a confusing and difficult time.

I feel like I must add in the final part of that story which is that when Ian was driving Nanna back to Gary and Marie’s house, she said to him “You are such a lovely man, my family don’t talk to me so I’m glad I have you to talk to.”

Whilst we’re on the topic of humour, we come to Tony. Nanna and Pop were always so proud of how hard working and thorough Tony is, and his work ethic and committment to his job means he commutes regularly from Moruya up to Sydney. Long hours on the road can make it hard to visit as often as he’d like, but in the early days Tony would regularly stop in and stay with Nanna. In more recent time, when he passed through Wollongong Tony has visited and joined Stuart and Carol for lunches at the Frat. One of the things so remarkable about our Tone is his sense of humour and optimism. He takes everything in his stride and we really appreicate Tony’s positivity and uplifting attitude through the hard times.

So to Tony, for always being the one you can count on to the see the lighter side in dark times.

Next, the baby of the family, Gary. When it comes to caring for his mum, the best way to describe Gaz’s actions are “he really stepped up.” He was Nannas baby, possibly the most pampered of the sons, but in these last few months, Gaz has provided the most wonderful hands on care for Nanna and also Carol. He’s stayed with them to give Carol some rest, sleeping on the floor beside Nannas bed so he’d wake immediately if she did. Gary hasn’t hesitated to give his mum the care she needed and has been Carols rock of support. We were all heartbroken that he was overseas when Nanna died, but I know how deeply proud she was of his work paying tribute to those lost at war.

So to Gary – for going above and beyond and caring for his mum in ways no son should have to, but doing so without complaint.

Nanna made no secret of the fact she has longed for additional daughters. There’s no question that Nanna adored her 5 sons, but I suspect her own upbringing surrounded by close and loving sisters meant she longed for a household of daughters. Thankfully her sons gave her more daughters in the form of their wives, who she loved dearly and taught so much to. I do want to mention my aunts, Pats daughters in law, who have been there for her through these last years as well.

Finally, there is no person who sacrificed more for Nanna then her daughter Carol. Determined to keep Nanna out of a residential care facility, Carol gave up her job, her home, and in many ways her life to spend time by Nannas side caring for her one on one.

I read a quote last night as I was trying to find the right words to describe Carols compassionate, gentle and selfless care. It stood out to me as the perfect description of Carol and Nannas relationship. “They may forget the words you said but they will never forget how you made them feel.”

The sad truth is that Nanna slowly forgot who all of us were, even Carol. Her decline into confusion was slow, and at first it wasn’t too bad. I remember Christmas 2016 when Nanna and Carol joined us for Christmas dinner at Stuarts. Nanna brought along with her a photo of Carols daughter Shelley graduating as a lawyer. She repeatedly showed us the photo and said “Have you seen that my daughter Carol graduated as a lawyer this year?” Nanna was so proud.

As time went on, she started refering to Carol as Eva. She believed Carol was her beloved sister. But no amount of confusion detered Carol. She remained steady and constant, Nannas faithful companion, carer and fierce advocate to the end.

Whilst Nannas behaviour sometimes distressed other family members, Carol took it in her stride. She responded with good humour and calm acceptance. And in turn, Nanna seemed so much more peaceful and less agitated in Carols presense.

Caring for a loved one with Alzheimer’s is exhausting, but Carol has been unwavering. Tony calls her a saint. We all feel the deepest gratitude that Carol gave up so much to keep Nanna at home until the end.

So to Carol, for caring for her mum with deep love, selfless devotion and rock solid commitment.

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