Caring for Myself
Caring for your partner through the ups and downs of a life-limiting illness is extremely stressful, it takes time and enormous effort. It's common to be left with no energy for yourself, which puts you at risk of burnout. To sustain and protect the people who depend on you, your own care has to be a priority.
Here you'll find guidance to help you manage your stress, self-regulate under pressure, and help to address financial uncertainty during terminal illness. We hope you can build the emotional and practical foundations to keep you going.
Understanding Self-Care
The words "self-care" don't describe what this actually is. That misunderstanding is part of what prevents us from being able to do it consistently well.
If someone you love is seriously unwell, it's likely that your nervous system is under sustained, abnormal stress. When you're living alongside serious illness, your brain and body are running in survival response mode almost continually. Your body is doing exactly what your biology was designed to do when someone you love is in danger.
The problem is that this state was intended for short bursts. Our fight or flight system is designed to run from a threat then recover, or tackle it and recover. For the partner or spouse of someone with an incurable diagnosis, a state of threat could go on for months or years. Watching your loved one suffer or deteriorate while also working, parenting and keeping everything together is exceptionally stressful.
Sustained stress without recovery exhausts you to depletion. It narrows your thinking and reduces your emotional range. This is why caring for yourself isn't selfish. You don't need a wellness routine (although a bath, massage or facial might be lovely).
The people who depend on you need your presence, to make decisions, support and comfort them. To do that you need small, consistent, achievable moments of recovery. And understanding why they work for you is the first step to actually doing them.
Support For LGBTQ+ During Terminal Illness
Several organisations offer specialist support for LGBTQ+ people, including Cruse, Shine, Marie Curie and Sue Ryder. Certain challenges faced by members of this community will require sensitive support which acknowledges the unique feelings and circumstances of those involved. You don't have to wait until after a death to get the support that you or your partner need.
Preventing Caregiver Burnout
Living with terminal illness often means enduring intense uncertainty, for an unknown quantity of time. But long-term stress risks burnout.
As a parent or caregiver, your loved ones usually come first. But taking a moment for yourself and investing time to find out how you feel role-models good mental health and self-care habits to anyone who loves you.
Since the future can't be controlled, many people find that living in the moment is the best way to cope. Focusing on the quality of each moment may be the best way to choose what's important, day by day.
If you're struggling to cope right now, this download is for you. We've written a guide to explain what's happening in your body when stress takes over, and give you some simple tools to help you feel more like yourself again.
Money Matters
Financial clarity is crucial for everyone's well-being.
The uncertainty of critical illness is difficult enough, without also having to deal with money worries. But the reality for many people is that they're not financially prepared to die young. Managing everyday costs, knowing your budget and securing an income are a big part of caring for those you love and caring for yourself over the long term, while navigating serious illness.
And it isn't easy. Personal finances can be complex. Many people struggle with financial hardship as a result of serious illness or bereavement. If you're worried about your situation, we strongly suggest that you seek professional financial advice.
That's why we've asked some trusted experts to guide you through the major decisions and help you check that you've explored the best options for your situation.
A professional can advise you on who to speak to and the best approach to take with your bank or other financial institutions. For instance, pensions and insurance companies may give you benefits early after a diagnosis with terminal illness. Or they may cover the premiums for someone who is seriously ill. Mortgage companies may view your circumstances as "exceptional" and be more supportive than appears in the terms of your loan.
Setting Boundaries
You know what's good for you.
People will want to help you, but help not asked for might be help you don't want. Try to notice when you're protecting other people's feelings more than your own.
You must give yourself permission to step away from any negative content, for instance on TV or in conversation. Don’t feel that you must be active on social media, you can just watch or stop using it entirely. Perhaps check your privacy and group settings online, to give your family a higher level of protection. Or set up a profile with a pseudonym, to enable you to post anonymously about the personal details of your situation.
Continuous change can be overwhelming. We've shared some milestones after diagnosis here.
