Some lung conditions can be life-limiting. Generally, your doctor will discuss this with you when you’re diagnosed or shortly after. If you or a loved one have been diagnosed with a terminal lung condition, it can be a very difficult time. Each person will experience this differently, but there are some strategies that can help you to navigate and process those experiences.
Talk about death and dying
It is not unusual for people to avoid conversations about death and dying with their loved ones, wider family and close friends when they have a life-limiting condition. Some of the most frequently cited reasons are a fear of upsetting loved ones, being too upset to talk and not wanting to be morbid. Most people try to protect their loved ones by avoiding the subject. In fact, for most people the opposite is true. Talking about these things can bring a sense of peace, a shared understanding and help to relieve stress and worry about what the other is thinking and feeling. Remember, it is okay to cry during these conversations. If you feel too distressed, pause, gather your thoughts and either continue or come back to it later. Tears are nature’s ‘pressure release valve’ – they help to regulate emotions.
Grounded in reality
Lung diseases and lung cancer present challenges to both the person living with the condition and their loved ones. It is not unusual for a partner, or another family member, to express opinions that are opposite to the reality of the situation. In short, they might be in denial. That person may be resolute in their expectation of themselves or their loved one getting better and reject the idea that more care and support is needed, or that the time to discuss end-of-life issues has come.
These are difficult conversations to have. Many factors affect why one or more people are in denial. However, the fact remains that eventually they will need to be brought around to facing the gravity and reality of the situation. Including your treating healthcare team can be very helpful in these instances as they are a third party and can help to take out much of the emotion attached to the denial.
However, even after these types of conversations, people may still need time to adjust to the reality of the situation. As much as you may want someone to ‘face reality’, try to give them the time they need and don’t be afraid to enlist the healthcare team to help again if needed. You don’t have to do it all yourself.
Decide what is and isn’t important
When you are adapting to the reality of a life-limiting lung condition, it is important to think about the things you are passionate about. Ask yourself: “What is really important to me and my loved ones?”. Then begin a list. When considering the list, you might find yourself writing down things that would be fun, exciting or adventurous, like climbing a mountain or going game fishing. While those types of things might be fun, are they really what is important to you? If yes, then you may try to find ways of achieving them. More likely, you will find other things on your list like:
- Tell those close to you how much you love, admire and respect them
- Sort out photos
- Organise your finances
- Spend time with people you like and love
- Write or record some of your memories and history
- Do things that create memories with those you care about
- Apologise or repair a relationship that matters
- Make a Will, advance care directive and enduring power of attorney.
There will be many other things you can write on your list but if you use your values and passions to guide what you write, many of those things will be achievable. Try to remember to be kind and compassionate towards yourself. Trying to be the best version of yourself and making each day count is something you might strive for, but you still need to have quiet days and days to rest and recover.
Examine possible future needs
As lung diseases and lung cancer progresses or changes, you may need to adapt your home in some way, shape or form to accommodate progression and decline in function. Discuss what might need to be done with your treating healthcare team in advance, so you can be prepared.
Emotional reactions
Reconciling yourself with the prospect of a life-limiting condition will bring with it emotional reactions. Try to let the moments when these reactions hit, not scare you too much. Try to remind yourself that these reactions are normal and to be expected. Practice your kindness and compassion on yourself by reminding yourself that you don’t have to be strong all the time; it is OK to show emotion and let those around you know you feel vulnerable at that moment. Ultimately, these shared moments may bring people closer together.