Recently our Advocate team was introduced to Jeanette and Shirley who talked about their experience of being an older person living with dementia. They were both open and frank sharing their experiences of being diagnosed, accepting it, and ‘getting on with it.’ We asked them about the beginning of their journey, what life is like now, and how that’s panned out over time.
Newsbites chatted to Jeanette and Shirley during one of their regular visits to Alzheimer’s WA’s Hawthorn House in Albany. Both diagnosed with dementia more than 10 years ago, these tenacious ladies refuse to let this stand in the way of living their best life, and making new lifelong friendships and connections along the way.
Advice for people who have just received a diagnosis
Jeanette and Shirley both described how difficult it was after being diagnosed with Alzheimer’s/ dementia, and what it meant for life as they knew it.
“When you first find out it’s really, really frightening and you just cry for weeks and months. And you do fall into a big hole. It’s a big shock and besides taking my driver’s licence off me, a few things like that, I can still try to do what I want to do.” said Shirley. The biggest thing for me was the fear. I really had a big shock!”
Both ladies talked about struggling to accept their new realities until they experienced a turning point after hearing another lady sharing her story of life after her dementia diagnosis. “She made us realise that your life’s not over. She gave us the guts to go on – and we haven’t looked back!” Shirley offered.
Now you might meet Jeannette and Shirley in the Great Southern sharing their own experiences with carer support groups, nurses, TAFE students and others working with older people living with dementia. This work is vitally important for them to share with others, so they too know this diagnosis doesn’t mean their lives are finished.
Stark reality and some top survival tips
At the heart of it, these two ladies were incredibly honest in accepting their lot, doing so with a great sense of humour. They also offered thought-provoking points about the journey and what to expect not just from yourself – but from others.
Jeanette mentioned when you’re diagnosed with dementia the levels of support you’d expect from your friends and family may not always materialise.
“In our experience, some of your friends can disappear. It’s the embarrassment that someone they know has this terrible disease. It seems some people just can’t accept there’s something wrong with the ones they love.” Shirley adds, “And it’s contagious.”
“So it’s good to talk to people who’ve been diagnosed. It will give you a sense of relief that your life’s not over.”
What are Jeanette and Shirley’s top tips to enrich your life – or someone else’s?
- Make a new friend. “Shirley’s my new best friend, my soul-mate. I don’t know what I’d do without her.”
- Pets are wonderful – dogs, cats, whatever your pet preference. They make such great company and don’t judge you when you’re having a bad day.
- Being in a supportive environment like Hawthorn House is vital. The camaraderie, hugs and love of caring staff and others living with the disease is invaluable.
- Surround yourself with people who understand what you’re going through and accept you for the person you are.
- Stay busy doing what gives you enjoyment. Find an activity that brings you joy or a sense of achievement – whether it’s singing, craft – find something that suits you.
On a final note from Jeanette: “I don’t care anymore. What is happening is happening and I’ve got a life. There’s life outside of dementia. I’ve learnt to laugh at myself. Because if you don’t laugh at yourself, then you get depressed.
There are a lot of negatives about dementia, but there’s an awful lot of positives about how to live your life to the fullest, and I want to let people know that you can have a really good life. And I’m going to live to 100 – and I’m having a good life!”
(Advocare Newsbites is very grateful to Jeanette and Shirley for sharing their stories with us and our readers. A big thank you also to Lorraine Benson from Hawthorn House for assisting with arranging our chat and a photo).
Card-drive post-script: One of the activities Jeanette and Shirley really enjoy is creating new original, handmade greeting cards from old card materials. These are sold for $2.00 each with proceeds going towards extra add-ons for the centre. If you’d like to donate any old Christmas or birthday cards for recycling to the ladies, please send these on to Hawthorn House for a makeover.
Address your mail to:
Donations to Card-making program, C/- Hawthorn House, 40 Henry St, Milpara WA 6330.
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