What does it really take to care for a parent with Alzheimer’s while holding down a full-time job?

In this episode of Do I Sound Like I Care?, Louise speaks with Sam, an unpaid family carer whose mum was diagnosed with Alzheimer’s over a decade ago. Sam shares her experience of navigating diagnosis, inadequate follow-up care, managing finances, surveillance for safety, and the harsh realities of council-provided care.

She also explains how she has managed to stay in work through routine, honesty, and a supportive employer, and why work can sometimes feel like respite rather than pressure.

This is a candid conversation about exhaustion, isolation, dignity, humour, and survival, and why carers need better systems, understanding, and support.

This episode was filmed while being followed by BBC Morning Live, highlighting the growing national conversation around unpaid carers.

If you are caring for someone with dementia, or supporting someone who is, this episode is for you.

00:00 Introduction and BBC filming context

01:00 How Louise and Sam met through their mums

02:20 The importance of day centres and carer support groups

03:15 Recognising early signs of Alzheimer’s

04:40 Diagnosis and being discharged with no follow-up

06:00 Losing independence with money and food

07:10 Using home cameras to keep mum safe

08:00 COVID and moving mum in full-time

09:20 Council care experiences and systemic failures

11:20 Being charged for care that didn’t happen

13:00 The breaking point and ending council care

14:00 Switching to private care and why it changed everything

16:00 Role reversal and increasing dementia progression

18:40 Staying in work while caring full-time

21:00 Why work can feel like respite

22:20 Supportive managers and carer passports

24:00 The stigma of being a carer at work

26:00 Why caring is not the same as parenting

28:00 Wandering, safety, and public misunderstanding

31:00 Finding other carers and shared understanding

33:00 Isolation, loss of identity, and loneliness

35:00 Small moments of joy and reclaiming self

36:00 Facing the future one day at a time

37:00 Closing reflections and thanks

In this episode of 'Do I Sound Like I Care?', host Louise Lynch welcomes actor and comedian Smug Roberts to discuss his experiences as an unpaid carer. They talk about his journey from stand-up comedy to acting, his new play 'Dementia Street', and the importance of maintaining humour while caring for a loved one with dementia.

Sharing personal stories, Roberts reflects on family dynamics, his upbringing, and the challenges of caring for his mother, who was diagnosed with vascular dementia. The episode explores themes of acceptance, resilience, and the necessity of preparing for cognitive decline, while offering insights into Roberts’ creative process and his way of coping with loss through theatre.

Follow Smug Roberts https://www.instagram.com/smugrobertscomedian/

Tickets on Sale to Dementia Street at https://homemcr.org/ from October 2024.

00:00 Introduction and Guest Introduction

00:32 Getting to Know Smug Roberts

01:33 Smug’s Journey into Comedy

04:48 Family Background and Early Life

06:28 Caring for a Parent with Dementia

06:40 Writing and Performing Dementia Street

08:39 Challenges and Humour in Caregiving

10:46 End of Life Planning and Family Dynamics

12:12 Visiting and Maintaining Connection

17:03 Personal Experiences and Reflections

18:44 Power of Attorney and Dementia

19:27 Caring for a Parent with Dementia

21:15 Challenges of Daily Care

21:56 Emotional Struggles and Coping Mechanisms

22:27 Innovative Care Solutions

23:31 Balancing Personal Life and Caregiving

26:52 The Reality of End-of-Life Care

28:38 Processing Grief Through Creativity

32:03 The Impact of Dementia Awareness

33:14 Personal Reflections and Family Support

37:18 Concluding Thoughts and Future Plans

Studio space provided by Generator Startup WorkSpace+Support

• Royal Mills
• Ancoats
• Manchester
• M4 5BA

https://generatormcr.org/contact/

Burnham reflects on his professional insights gained as the former Health Secretary and his advocacy for a national care service. The discussion delves into the emotional and logistical complexities of caring for a family member, the importance of respite for carers, and the inadequacies of the current social care system. Burnham calls for political courage and systemic reform to better support carers in the UK.

531d6e56cad061de1c5e063662c5e3b7f1ed1f19

They delve into the transformative role music played in managing dementia, the impact of the pandemic on mental health, and the importance of respite for caregivers. Claire shares touching anecdotes about her mother’s journey, revealing the challenges and unexpected joys of unpaid family care, and highlighting the therapeutic power of companionship and pets.

The episode also addresses the importance of counselling and social services, underscoring the resilience required in caregiving.

00:00 Introduction to the Podcast

00:48 Meet Claire Pilling: Musician and Carer

01:14 Claire’s Musical Background and Family Life

03:00 Recognising the Signs of Dementia

04:15 Lockdown Challenges and Seeking Help

07:54 Balancing Work and Caregiving

11:39 Navigating Social Services and Support

14:15 Dealing with Sundowning and Wandering

15:28 Agreeing to Avoid Confrontation

15:57 Coping with Rapid Progression

18:14 The Role of Music in Dementia Care

21:12 The Importance of Respite and Counselling

21:38 The Challenges of Respite Care

23:23 Transitioning to Permanent Care

27:09 Music Therapy and Glo Sing

29:56 Final Thoughts and Reflections