1 May 2025

Harrow Memory Clinic and Community Mental Health Team (CMHT) staff were privileged to have two dementia carers, Heidi and Marielle, come in to speak in their monthly journal club. Heidi and Marielle both care for their mothers, who are in the advanced stages of their journey with dementia. They have teamed up to set up an Instagram account (@dementiatalkwithmandh) to help other carers to know that they are not alone, and to share their lived experience, wisdom and stories of hope and coping. They are realistic about the many challenges in caring for a loved one with dementia, including having to manage the responsibility of being an only child with the competing demands of work, raising young children, and attending to one’s own self-care, together with having to navigate the emotions of feeling like they were letting their mothers down by getting a diagnosis, or by admitting that there was a need for paid carers to step in.

Staff were able to ask them questions about the support they received and where they feel that support and services could be improved across the dementia care pathway. One of the take home themes was for wider health and social care services to have greater dementia awareness and to be flexible in applying one-size-fits-all criteria when the person with dementia can fluctuate and respond differently from moment-to-moment. In addition, they provided a personal account of their own processes in coming to terms with the diagnosis and with feeling ready to accept support in the form of pamphlets, carer support groups, and giving over care to paid carers. The message in this was for services to be responsive to carers needs, as well as the needs of the person with dementia, and to meet them where they are at in their emotional process, which will be very individual.

Heidi and Marielle shared all of these insights generously, and with a contagious sense of humour. Humour is also evident in a book that Heidi has authored for carers, called ‘Milk Tulips’ (available on Amazon Kindle for free here: Milk Tulips), and it has clearly sustained them both in this journey with dementia that they are still navigating. Below is a poem from ‘Milk Tulips’ by Heidi Cross, shared with permission:

I Miss You

 

I miss you Mum, yet you’re still here,

You’re someone else, I sometimes fear,

The things you say so strange at times,

I feel I’m going to lose my mind.

 

Sometimes I know you love me still,

But other times you rage until…

I have to go… walk from the room,

And calm myself, while darkness looms.

 

Day by day your memories fly,

It doesn’t matter what I try,

You leave me more, each single day,

Sometimes I want to run away.

 

I tell myself ‘Remember, please….

It is not her but this disease’.

But glares and stares cut to the quick,

It’s not your fault, I know you’re sick.

 

I’ll fight to keep you safe from harm,

But there’s no cure or lucky charm,

I have to watch you slip away,

It’s just not fair, it’s not ok.

 

I try to think of happy times,

Before Dementia stole your mind,

Your kindness, beauty, sense of fun,

But this disease we can’t outrun.