Anthony's story

Hi, my name is Anthony and I am an LGBTQ+ carer.

My caring journey

My mum was formerly diagnosed with dementia at the beginning of 2019, I have been caring for Mum since then including assisting with all her activities of daily living and in the last three years more personal care including preparing meals, shopping, bathing and showering, preparing her weekly Dossett boxes for medications, taking Mum to hospital appointments, overnight stays, and liaising with all the relevant community and social care aspects that Mum requires assistance with. 

There are many agencies and support groups available but there is no one consistent key worker that can focus on Mum's long term care needs and therefore this is down to me! This means going around on a nearly day-to-day basis and the bi-daily phone calls to check she is safe and well. This is a constant struggle and truly exhausting to the point where it seems impossible to make any time to look after my own physical and mental health.

More recently in December 2022, Mum had a stroke which has been life changing for her and us as a family. For me personally being an LGBTQ+ carer makes me more vulnerable to this situation as I can sometimes be seen as an individual who has no other responsibilities or dependents and because I am a NHS worker, it is presumed by health & social care professionals that this should be my role rather than just being able to be my Mum’s son.  On top of my full-time job, I am equally doing full-time hours caring for Mum to the point where I feel my life for the last 4 years has been solely around caring for Mum and my life has been paused. There has never been a time in the last few years when someone has been there for me, or asked how I am feeling or coping but instead I am expected to "just get on with it".  

Getting support

In 2020 I was fortunate enough to join an LGBTQ+ carers project in Manchester where we have monthly online meetings and this feels like the only place where I was truly able to express myself as a gay man and a carer. Having a support network enabled me to give myself some time to focus on what is important to me, in a safe space where there is no judgement from other LGBTQ+ carers. It has made me reflect on the amount of care I do provide to my mum and that groups like this are needed massively to hopefully support all LGBTQ+ carers in the future and to provide social meetings, walks or even short breaks for us. Unfortunately, the network group I was attending over the last couple of years has had its funding pulled now, so not ideal.

For me the biggest challenge to date is trying to get a key worker to help Mum and myself go through all the complex challenges along this journey such as making sure Mum is receiving the correct benefits, holistic support from the GP and wider community services to enable Mum to continue to live at home independently. To have access to one social worker rather than this constantly changing to on-call social workers who do not understand Mum’s care needs and therefore me having to explain Mum’s situation every time we ring them. Getting adequate and supportive care packages in place to keep Mum safe in regards to her activities of daily living.  The amount of paperwork that I have to fill in is so difficult and complex to understand including things like financial assessments, arranging power of attorney forms, and applying for support with funding for essential care that Mum needs. It all feels very invasive and improper, yet the carer is just left to it all which has had a profound impact on my own health and well being and continues to do so.

More needs to be done

There needs to be more support and places where carers can continue to do their role but at the same time be able to look after ourselves and more importantly our mental health and well-being. Even though I am registered as an unpaid carer with my own GP they have never contacted me to see how I am. I have been taking Mum to the same GP as me for the last 10+ years and although I have had a Carers Assessment this needs to be offered to all carers to give them the best emotional and financial support that is needed.

To summarise, my mum is currently in a nursing home as she now needs round the clock care but this doesn't take away any of the daily stresses that I face. For me personally this has proved even more challenging than before Mum’s stroke when she was at home. I now spend most days, more so than before, chasing follow up calls to doctors, the nursing home, and health & social care workers who have assessed Mum as not having a "primary health need" and therefore Mum is now most likely have to pay for her own care going forward which will involve selling her home that she has lived in for more than 60 years.   

The one thing that sticks out to me is that there is minimal support out there, not only for LGBTQ+ carers, but for all carers and we are just left to it without any professional, emotional and physical support for our own mental health and overall well-being. Therefore, we continue to struggle being carers and without the support, understanding and financial backup from local councils this will only get more difficult until carers are heard and treated fairly.  My beautiful Mum did not choose to have dementia or a stroke and yet I have to fight to get my mum the best care she deserves without any help and so our journey continues.  

By Anthony Murphy

Published on 02/05/23