Not Long Left
If you're worried that your time together is running out, this page is intended to help you understand what matters most right now.
It's written from the perspective of perhaps only having a few days left together. We've also talked about preparing caring at the end, if you think you have more time, here.
Trigger Warning: We can talk openly about dying and what the end might be like, because we've lost our loved one. If you're not ready to think about it, you don't have to read this. You can leave this page anytime.
What's Most Important Now?
If your partner has received an incurable diagnosis with a short prognosis, or if you've known for a while that things were getting serious and now you want to face the practical reality, there are a number of things to do which cannot wait. It's better to do it, than to have to handle not doing it.
Not everything is urgent. Most things can wait. But a few are best done now, if you have any time.
We've put together a short download that covers this triage list. Free to download and edit. It's a guide, written for partners and spouses who don't have much time or headspace. Written by people who've lived through the difficult unpredictability of a terminal illness, using the insights they gained on the way.
We hope it helps you to make the choices which are best for you.
How Will I Know If It's the End?
This is a time when things begin to shift in subtle, important ways. It's different for everyone. Things may change over months, or happen suddenly. One conversation can end everything in an instant. Or you may simply sense that the end is not far away. Perhaps your partner is sleeping more or eating less. You might notice that the medical team use a shorter timeframe when talking about treatment, perhaps the choices they refer to now are measured in days, not weeks.
Everyone would wish to keep the possibility of months and years open, but there comes a point when that horizon drops away. Treatments stop working, your partner may be too frail to respond to clinical intervention, and the focus quietly moves from cure to comfort. The only way to find out how close you are to the end, is to gently and directly ask the experts around you for guidance.
This is the point where palliative care becomes central. It doesn't mean giving up. Many people, especially young, strong adults, live for a significant time under palliative or hospice care. The priority is now quality of life, comfort and dignity, for your partner and for yourself. If a palliative team isn't already involved, this is the moment to ask your GP or hospital consultant about when a referral will be needed.
Below we've listed some decisions that might come your way, if you don't have long left. And we've suggested ways you can care for yourself during this acutely stressful time.
We're so sorry that you're here. We hope you find what you need to get through it.
Possible Decisions Towards the End
You are your partner's advocate, because you are the person who knows them best. You may become their voice when they can't express themselves. The doctors can get it wrong and you might not know how to do it perfectly. This is a time to trust your instincts.
Being present and trusting your instincts can help your partner to feel at peace. It can also be acutely stressful. You are not alone, even if it feels that way.
Some conversations will come before you're ready. Decisions about treatment, care or the need for CPR can happen at any moment on this path, not just at the end. We've covered thoughts about how to die well here.
Below we share a few common questions to support you and your partner.
Where To Be at the End?
Choosing to die at home, in a hospice or in the hospital is a conversation most couples wish they'd had early, because it's easier to share what you want when it's not happening. Those preferences can change, but knowing everyone's wishes gives you something to hold onto when you're navigating the needs of children, other family members, and clinical recommendations towards the end of your partner's life.
Who to Involve at the End?
Living with a life-limiting illness may change your partner's point of view on who or what matters most. People who they've been close to, may not be the ones they want to share the end with. The path to this point may have shown them who needs to be there. A phone call from the hospital bed may conserve their energy more than a visitor. A voice message may say all that's needed and last forever. It can be difficult to be a "gatekeeper" but knowing how they feel about these relationships, before the end and as things change, can give you confidence to care for their needs on the way.
How to Tell Children
Young people and children need adults to be honest. Do not avoid words like death and dying. They're likely to be upset and so are you. It's OK to show your emotion. You can acknowledge your feelings and reassure them that you'll be OK in a moment. This helps them to know that it's OK to express their own feelings. It can be helpful to stick to biological terms with young children. They like to know that their person can't feel hot or cold, hungry or thirsty, and they're not in pain. It's also important for them to understand that their person will stay dead, however much we may wish for them to come back to life as they were. This remains important, even for older children.
What Happens at the End?
Dying is a normal process which every human goes through. It can be very profound to be there. Knowing what happens in the last moments can help you to feel less frightened, and more able to support your partner as they go through it. Reading the information here may help you to plan for your needs, discuss spiritual ideas, or help you to make memories, which can support you as you stay beside them. Remember, if you don't feel ready to read this yet, you don't have to.
Things to Consider at the End
If your partner is dying at home, a specialist nurse or doctor may recommend getting equipment such as a hospital bed and having "just in case" injectable medications available. Not having these in the home, can delay comfort and prevent professionals from giving them quickly. If the patient has sudden distressing symptoms, pain, agitation or if they cannot take their medicines orally anymore these may be needed. Some people become agitated towards the end of life – although this is not widely talked about. It's not an inevitable part of dying, it can be caused by medications, the patient's condition, or psychological factors, and it can be managed. However, it can be distressing for a family or partner to witness.
Caring for Myself at the End
Being with your partner as they die is going to be an acutely stressful time. You're probably in shock, even if you don't feel that way. It's normal for your body and brain to protect you at this time.
Keep breathing.
We share more about being there at the end here. You're probably not sleeping well due to adrenalin. You may forget to eat. Some people talk about feeling strangely calm and composed. And then the next minute completely falling apart. Many can remember very little afterwards, and yet others can remember every detail.
There are no rules. This is how it is.
If you're struggling to cope right now, ask your local hospice what support they offer spouses and partners. There's often counselling, massage, reflexology, and other services for families.
We've written a guide to explain what happens in your body during acute stress, and give you some tools to cope.
