Prioritise your own self-care so that you can best help those you care for

These wise words of lived-experience are from Amanda, who is a full-time carer for her partner Natalie (age 39) and for her 75 year old mum. Natalie’s care needs centre on her mental capacity issues as well as physical mobility problems.  Her mum has onset dementia and misses her home back in South Africa. Luckily they both live locally and within 5 minutes walk of each other so Amanda spends much of her time going backwards and forwards as both ladies are carefully shielding and have been so for the past year.

What changed for you as carer when we when into lockdown last year? 

Keeping them both safe has presented many challenges; limited opportunities for exercise has compounded their mobility issues and the lack of interaction with others outside their small bubble has exacerbated feelings of loneliness.  

As their carer, constantly striving to ensure both ladies are elevated and engaged has been a big challenge for me and sometimes it is easy to feel melancholy and helpless, but I am working hard at managing my own feelings.  Attending the monthly zoom meetings with Gateshead Carers LGBT Superbia group has provided a protected environment and the opportunity for me to let my hair down. I have also developed a very good relationship with my GP, who is available to speak to me over the phone when needed.

What have been the biggest challenges for you and the people you support? 

Being very restricted over the past year has meant that I have not been able to see my siblings in London and for us all to share some of the care around mum. Lacking the face to face personal interaction with family has also been very hard for us all and particularly so for my mum as someone with onset dementia. Mum used to work professionally in global mental health and with the United Nations and through the AIDS epidemic of the 1980s. Her dementia frustrates her as she is fully aware of the current COVID pandemic yet also confused with what is happening. She recently received her first dose of the COVID vaccine at the Centre for Life but found it overwhelming and a somewhat frightening experience.  She can’t yet see the light at the end of the tunnel.

Natalie has a lot of anxiety around technology and really struggles with Zoom.  So not being able to chat online in this way with her friends in the LGBT community this past year has exacerbated this fear and anxiety even further, as well as the feelings of isolation. Luckily Natalie has an outdoor area which we have developed and we both look forward to a time when we can enjoy some gardening and BBQs.

One of my elderly neighbours asked for some help last year in bringing some life and colour to his front garden. I helped him plant some spring bulbs (socially distanced) and my mum chatted to him about gardening too. The small community where we live have been really supportive of each other and as an LGBT couple we have never experienced any problems.

What are your hopes and fears for the future? 

The governments’ most recent announcement on coming out of lockdown has given me some hope and I have started thinking of planning a much needed holiday with Natalie next year; somewhere not too far away, but a place to allow us to really enjoy life together outside of the home.

It is easy to lose sight of your own needs as a carer and I have felt that over this past year it has resulted in me neglecting my own personal needs and that I haven’t put aside any special time just for me! A bit of well deserved pampering like doing your nails and hair can really give you such a boost.

When asked what her key message to other carers would be, Amanda replied “prioritise your self-care and ensure the personal climate around you is safe so that you can best help those you care for”.