We’ve started a new programme this year called Caring 2. It is an extension of another programme we host called Still Caring which is a lunch club that offers support, outreach and skills to (primarily) husbands and wives who actively care for or have once cared for loved ones with a dementia diagnosis. This new programme extends similar resources to working adult carers those who cannot take time off from their day commitments to make the lunch.
Caring 2. is a pilot we’ll run this year to see if we can make a difference by supporting those individuals who often go unnoticed because their primary identity is as a working adult or a young parent and the care they offer to a loved one with, say, dementia takes priority after that — because let’s face it, we have to pay the bills and get our children to school or there are physical consequences.
My hope is that this new programme will fill the need and be a vibrant, resourceful opportunity that a working carer finds useful and supportive. But there are a few challenges. One significant challenge is that many carers don’t actually consider themselves a carer, even those who are caring 24/7. They have other identities that they associate with more strongly or are embedded more deeply like husband, wife, parent, artist, musician, bowler, gamer, etc.
Another challenge is that when carers, whether working or not, seek help they often seek assistance and support for a specific problem they want to solve or ameliorate, especially on line. They are not anticipating that there may be additional issues in the future and those offering supportive resources most likely support the person caring rather than the issues they’re facing.
So, what do we say when we want to identify this individual who may be supporting an older parent for up to 19 hours a week? It’s a significant period of time, equal to part-time work, but then caring for someone is significant even if you do it for an hour late at night when your mum or dad is restless and can’t quite settle into sleep. Do they know they’re part of a generation now called The Sandwich Generation in the UK and The Big Squeeze in the US?
Given all of this, we face another challenge in that an adult child of parents facing complex ageing issues doesn’t want to adopt the term carer when his or her parent has already adopted this role. What to do then? There are dignity and empowerment issues along with levels of respect for what is being witnessed present but the reality is that you may be playing a significant role too. In our Compass programming, we tend to use the phrase care partner which extends to family members and others playing supportive roles. It also allows us to include the individual with a dementia as a partner too who is helping to work together at a level that suits them. I hope you don’t scoff at this. We see it a lot in our activities when husbands and wives are speaking openly about the diagnosis. We also use care partner because we can then be part of this. We know the really successful care stories we witness are people who have built up a care team of individuals so no one person has all the burden of care, especially when we know that care sneaks up on us and can become a 24 hours a day, 7 days a week responsibility and doing that alone isn’t sustainable.
Which leaves us with a bit of a quandary, how to we identify and support individuals who would walk by a flyer that read “support for working carers” because they don’t identify with that phrase? Most likely we’ll build up the interest by word-of-mouth and will need your help to do this. It will take time but we will be patient and remember that even Rome wasn’t built in a day.
If you’d like more information about the Caring 2. programme, please feel free to get in touch.