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Living with Alzheimer’s

Watching a loved one with dementia ‘disappear’ is a harrowing experience for all. But there are means to make coping easier.

Living with Alzheimer’s

By 2050, it is estimated 147,359 New Zealanders will have dementia – that’s triple the current numbers. Worldwide, at least 44 million people – and their families – are living with dementia.

Alzheimer’s disease is the most common type of dementia, an overall term for conditions that occur when the brain no longer functions properly, and typically causes problems with memory, thinking and behaviour. In the early stage, dementia symptoms may be minimal, but as the disease causes more damage to the brain, symptoms worsen. The rate at which the disease progresses is different for everyone, but on average, people with Alzheimer’s live for eight years after symptoms begin.

While there are currently no treatments to stop Alzheimer’s disease from progressing, there are medications to treat dementia symptoms and some therapies to ease the suffering of patients (see “Sounds that Heal”, opposite).

Like many illnesses, dementia doesn’t just affect those with the disease, as friends and family are often the main carers of individuals impacted – about half of those with moderate to severe dementia live in their own homes or in the home of their carer. Here, one carer shares her story of living with dementia and the impact it had on her relationship and family and how she found support and assistance. 

A carer’s story

Pam Salvador’s husband Bruno first started showing signs of dementia in 2005. After an operation to clear the carotid artery, Bruno had a small stroke, which did damage to the brain, leading to vascular dementia.

Says Salvador: “People are often quick to say he or she looks perfectly alright, but are they with them every minute of the day? Caring for someone with dementia is an extremely difficult task and people who devote themselves to this kind of caring are very special.

“Some days you might chuckle at something odd that has been said or done but most of the time you feel like screaming out loud – and you might actually do that. Repetition is very trying, especially when it goes on all day long and replying three or four times to answer a question can be ‘climbing up the wall’ material. But you have to laugh at some things – like when Bruno was going to take some bottles to put in the bin outside and they ended up each side of a shelf in the garage with a courgette in the middle.

“Then other times you could cry – a man who had such an active, clever brain and could put his hand to anything, can now do nothing. He does not know the difference between a microwave, oven or dishwasher.

“I’ll never forget the first time Bruno failed to recognise me. We’d had a busy weekend away and when we came home, he started showing me around the house saying ‘this is the kitchen’, ‘this is the bathroom’, and I said I knew where everything was because I had lived there for 25 years. Bruno said ‘no you haven’t’. He said that I wasn’t his wife and he would take me home soon.

“I first heard of Alzheimers Auckland through our needs assessor – she said there was an education course I could attend. I remember around 14 of us sharing our individual circumstances – there were tears, sadness and laughter. I looked around and thought ‘I am not alone in this anymore’. There was a bond between us. We started learning about the signs and stages of dementia and how to cope with it – it became a lifeline and I looked forward to going to each Tuesday session.

“It has been two years and four months since Bruno went into care. It was so hard to make that decision as there are so many doubts as to whether it was the right thing to do, especially when there was criticism by some people, who have no idea what it involves to look after a person with Alzheimer’s or dementia.

“At first Bruno could go out for a coffee, have a conversation and go for a walk. Now he can barely walk, cannot understand or have a conversation and is incontinent. He still says my name but does not know our children or friends, although he seems happier when they are around him. It is so difficult to know what he is thinking.

“It hurts me to see the pain, hurt and sadness in his face and eyes, but I tell him I love him and hold him close every time I visit. Perhaps he can feel that love. I hope so.

“On the positive side, Bruno is well cared for. I have my friends, old and new, who I have met through the Alzheimer’s group I go to, who have always been there to support, comfort and help me as I too have given support to them. I am so grateful for that.”

Where to turn

A number of organisations in New Zealand have programmes and support groups in place to help carers, offering assistance and advice on managing some of the day-to-day issues faced when looking after someone with dementia.

This includes coping with behaviour changes, preparing your home, taking care of yourself, managing personal care and looking at residential care options.

For more information see Alzheimers New Zealand, alzheimers.org.nz.

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