Definitions | Ageing as an LGBTQ+ Person | Needing Care | Death Planning | Grief and Bereavement | Caring for Yourself and Others | Money Matters | Resources
“With HIV, because it was so sudden, lots of people died unexpectedly so young, no one was prepared, and I saw some dreadful messes left behind. No one at 35 expects to die”. - David Polson
Many LGBTQ+ people care for someone who is sick or dying but do not always define themselves as carers. As we are less likely to have children, we naturally and often perform caring roles for our partners, friends and family members.
As well as the stresses that usually accompany caring, LGBTQ+ people face unique challenges. Fear of discrimination may stop us from seeking services or disclosing our sexuality, gender or HIV status. LGBTQ+ relationships and chosen families may come into conflict with the family of origin. Older LGBTQ+ people are more likely to be carers, and to rely on unpaid carers, due to limited contact with families of origin, being less likely to have children, historical discrimination, and difficulties accessing services. Carers may have a range of emotional and practical needs to consider, including:
- Financial and employment concerns, such as your employer allowing flexible hours and time off work for caring duties, and access to the carers’ allowance
- Resources you will need to provide care at home with, including equipment, home modifications
- Access to respite and hospice care. LGBTQ+ people may also take on caring roles for people who have stigmatising or discriminatory attitudes, or who don’t respect a carer’s identity.
Differences in attitudes between a carer and the person they are caring for can lead to complex dynamics. The person receiving care may feel resentful that they rely on care from someone whose identity they will not respect. The carer may shoulder the burden of discriminatory attitudes, as well as the burden of the caring role.
LGBTQ+ people can be expected to take on caring roles if we are seen as “single” because our relationships are not valued, even though we have our own commitments to our partners and chosen family, as well as work, community, and social commitments. Carers Victoria found that women from LGBTQ+ communities spend more time caring than other groups.
“The medical jargon is a bit lost on my parents who weren’t familiar with that kind of thing. Ever since I was 10-12 years old I’ve been offered medical documents and asked to explain what’s going on or why doctors are making a particular choice. Every part of my identity takes a back seat. My identity is a bit of a dirty family secret at the moment, it’s not spoken about and when it is spoken about it’s in euphemisms, so during those high care moments that need a lot of attention and thinking, I’m not the trans one or the gay one, I’m the one who knows how to read [English] medical documents, and the one that can read these contracts. There’s an implicit animosity there, an implicit unease.” – Anonymous
Caring for Yourself
“We’re all dealing with this familial stress and then I go home, I’m still trans, I still have to deal with all of that and that’s not something that’s acknowledged, it’s expected that you’ll be as available as you need to be to sort everything out. It’s frustrating, it always sucks not being seen.” - Anonymous
Both LGBTQ+ populations and those who are carers report poorer mental health outcomes than the general population, so as an LGBTQ+ person in a caring role, it is especially important to value self-care and reach out to your community where you can.
It is easy to lose yourself or ignore your own self-care in a caring role. The care of another person, especially someone you love, is stressful and exhausting. There is a phrase “fit your own air mask first”. When the oxygen levels on an aeroplane drop, masks drop from the ceiling. Safety messages remind passengers to put their own mask on first, before helping others such as children or people with mobility issues. If you help others when you cannot breathe yourself, you will both put your own safety at risk and be unable to help them.
The same applies when you are caring for a seriously ill or injured loved one. You need to look after yourself before you can look after anyone else
It is normal to feel angry and resentful at times. You may experience grief, anxiety, stress or depression. You may be uncertain about the future or your own caring role.
Things you can do:
- Join a carers group. There are in-person and online groups, talking to others who are experiencing some of the same things you are can be important.
- Take time for yourself. You may be able to access respite services or ask another family member to take on periods of care. Respite care may be available for a few hours or for longer periods, in the home or in other settings such as day centres, nursing homes and hospitals.
- Stay connected with your social contacts. Remember your identity outside of being a carer. You can also connect into local social groups.
ACON provide provide low-cost confidential fee-based short term counselling (up to 12 sessions) for 18yo+ LGBTQ people seeking support in relation to their mental health and wellbeing.
Sharing someone's end of life journey
It is often difficult for people to reach out for support during their end-of-life journey. If you know someone is at this difficult stage in their life, reach out and let them know you are there for them. Talk with them about how you can help and walk by their side. Often it could be something as simple as listening and having a laugh. It may be to help with shopping or assistance with getting to an appointment. You never know the enormous benefit you could be adding until you ask and understand the person's needs.
Carers NSW aims to improve the lives for all carers across NSW by providing information, education and training, resources and referrals to support carers.
Every caring situation is different. Carers can be paid or unpaid. Some carers provide 24-hour nursing to a family member with high care needs. They help with daily needs and activities like feeding, bathing, dressing, toileting, lifting and moving and administering medications.
Other carers support people who are mostly independent but may need someone to keep an eye on them, or help them with tasks like banking, transport, shopping and housework.
Most carers give comfort, encouragement and reassurance to the person they care for, oversee their health and wellbeing, monitor their safety and help them stay as independent as possible. Carers help to improve the quality of life for the person they care for.