Helena Quaid from Cork sums it up very well.
“The reality is, if we as carers don’t look after ourselves, we won’t be able to look after the person that we’re caring companion to,” she says.
Her husband, Kevin, now 59, was diagnosed with young onset Lewy Body Dementia at the age of 53. Helena is careful about how she describes herself. She prefers the terms ‘spousal carer’ or ‘caring companion’ rather than ‘carer’. “I’m Kevin’s wife as well as the person who cares for him so those terms are more appropriate,” she says.
She is a strong advocate for those with dementia, and for those who care for them, and is currently chairperson of the Dementia Carers Campaign Network (DCCN), supported by the Alzheimer’s Society of Ireland.
Her husband is also an advocate and together they give talks at dementia information events, helping those who are newly diagnosed and living with the illness.
Helena highlights the fact that carers’ health is often at risk. “A Trinity College study has shown that a very high percentage of spousal carers develop chronic illnesses like anxiety, depression, and high blood pressure,” she says. “This proves that having a caring role does have a big mental and physical impact, so you must be mindful of your own well-being.”
An illness like Lewy Body Dementia is complicated and often misunderstood. While medication is helping Kevin and he is more mobile than he was, his illness means that he experiences hallucinations and distressing nightmares. He also has Parkinson’s Disease and sleep apnoea. “Kevin hasn’t driven for over six years due to his hallucinations and spatial awareness difficulties,” Helena explains. “Memory loss is not his greatest problem.”
One day at a time
Based on her own experience, what tips has she found useful since Kevin’s diagnosis?
Her first tip is to ask for help and support from your GP and your family, and to contact a dementia adviser. “We need to ask for help,” she says. “There were times I wouldn’t ask but you have to. Caring is very isolating. We have found that some husbands will tell their wives not to tell anyone that they’ve had a diagnosis of dementia. Wives will do the same. It’s very isolating then for the partner. If your GP can’t put you in touch with a dementia adviser, ring him or her yourself. There is no support as in someone calling out to the house, but there is support if you get out and attend the meetings.”
Her second tip is to find fun. “Take regular breaks, meet friends for coffee, go for a walk. You can’t be stuck in the house 24/7.”
Next, she recommends having positive distraction in your life. “Positive distraction is worth gold to any caring companion or spousal carer because if we don’t have a distraction in life things seem worse – and they are worse. Kevin and I are both advocates and we attend a lot of meetings in Dublin, which helps us get out and about and feel useful. We are caring and sharing at the same time.”
Helen also mentions that “people with dementia still have a lot of ability and it’s important to remember that.” Kevin writes regular articles about dementia for the Mallow Star and is author of two books about dementia: Lewy Body Dementia, Survival and Me and I am Kevin! Not Lewy.
Her fourth tip is to have a good positive attitude. “Try to be a ‘glass half full’ person,” she says. “Take one day at a time, sometimes one hour at a time, and remember that there is always someone worse off than yourself.”
Her final two tips are to have regular medical check-ups and to attend support meetings. “It’s essential that you look after yourself and have regular health checks. Don’t say ‘I can’t go because my husband or my wife needs me. I know it’s easier said than done, however, if you’re in a fit of depression.”
Helena has high praise for carer support organisations. “They are all fantastic,” she says. “In the case of dementia, you can attend dementia cafés once a month, for example. You’ll get hope from others and experience togetherness. You’ll also get a better understanding of the person with dementia and of the behavioural challenges involved.”