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© Danielle Robertson Consulting Pty Ltd t/as DR Care Solutions
Caring for someone with dementia at home is recognised as one of the most challenging and debilitating caring roles.
According to Alzheimer's Australia research (download research paper here ), the role involves more hours of care on average than most other categories of carers, and such carers are more likely to experience significant strain, stress and psychological illness, such as clinical depression.
To help others experiencing the journey of dementia, Anne Tudor and her married partner of 35 years, Edie Mayhew, have shared their story in the documentary, "Mr Velvet Ears" . The film takes its name from their Dementia Assist Dog, as the story is told through the eyes of Mr Velvet Ears.
The journey covers the time at which Anne makes the difficult decision to move Edie into a residential aged care home. At that stage, Edie had been living with dementia for 10 years. Filmed the day before, during and three months after Edie's move, the film chronicles the challenges and how Anne worked through them.
If you or a loved one cares for someone with dementia, you will draw some comfort from Anne's experience and her words. Here's a brief summary of some of her thoughts.
"There's part of being a partner to someone with dementia that really refuses to relinquish the care because maybe you think others won't do it as well ... You really don't want to come to terms with [the] changes and progression and incapacity [of your partner] ... because you don't really want to make the decision to separate."
"It's amazing that you do it [take on the role of carer] for as long as you do; but you do it because the person you love is still there, in a changed way."
Anne expresses how she came to terms with the decision to move Edie to care. "Making the decision has become more and more a certainty for me ... [as] this is the right thing to do for Edie. It's okay for me to do it. It's okay for me to have a life that is beyond and outside Edie's dementia."
Yet even on the eve of the move to residential care, Anne continued to wrestle with the decision. "There's still a part of you that says: Can't you go on a bit longer? Can't you do more? Are you giving up? Are you weak? ... [Despite the fact] you've used every ticket you have up. There's nothing left and you are still saying: Well, can't you do more?"
Anne shares what she refers to as "the good advice" of their GP. "Something our GP said was, you need to allow Edie to have her own experience of dementia ... [yet for me] accepting that need for separation is really hard. But I do think it's good advice to not try to intervene into that space that is Edie's space, it is her dementia." Anne goes on to explain how in the past she had fought that space, to make it as if Edie didn't have dementia.
I recommend the film. Its themes are familiar to me having supported so many clients who play the role of carer to a loved one with dementia.
The story reminds us:
- Not to intervene in the space of a person living with dementia and allow that person to have their own experience of dementia. We need to enable them to live the best life they can, with good care provided by good people, and with the colour and movement of activities and visitors, in particular kids and pets.
- Of the importance of supporting carers as they put the person living with dementia first, and struggle on with their relentless, exhausting and emotional role as carer.
The privately produced film can be accessed from the Celebrate Ageing website for a small fee. Watch the trailer here:
If you require support in decision making around the care of your loved one with dementia, please feel free to contact me, Danielle Robertson at DR Care Solutions, for an initial discussion.
DR Care Solutions offers expertise on how to set up the right care, support and assistance for your loved one, at the right time and in the right place.
Seeking more information on caring for someone with dementia? Refer to my prior blogs:
- Caring for loved ones with dementia in residential care during COVID-19
- Managing care for someone diagnosed with dementia , and
- Taking a break while looking after a loved one with dementia .
