Caring for someone who is in the last stages of life can take a lot of time, energy and effort. For some people it can take over their lives, especially if there is no respite from the round-the-clock work of caregiving – practical tasks such as managing their personal care (washing, grooming, dressing, toileting), administering medication, preparing food and drink, and helping to move, turn and lift them.
While taking care of those physical needs and ‘staying busy’ may offer a distraction or give you a sense of purpose, it can also leave you feeling exhausted and overwhelmed. More importantly, it can use up valuable time that could be spent enjoying those final moments with the person you love – not as their ‘caregiver’ but as the person they know you to be.
Taking care of those physical needs and ‘staying busy’ may offer a distraction or give you a sense of purpose, it can also leave you feeling exhausted and overwhelmed.
Many people say they want to do fewer chores and more hand-holding, but often they don’t know how. A good start is to find others to help you care for the person, as well as assist with other aspects of your life (grocery shopping, house cleaning, appointments and pick-ups). This could mean asking your family for support, delegating jobs to friends and neighbours, or utilising health and community services such as palliative care, community nursing and in-home hospice care. We have a useful model called the Circle of Care that might help you manage this.
Start small and often
The more you share the practical work, the more space you will create for the precious moments of connection with the person you are caring for. These moments will be different for everyone and they do not have to be grand; even simple gestures can be meaningful and memorable.
Reading, listening to music or sitting in the garden together can bring joy to you both. Saying thank you, exchanging a smile or sitting in comfortable silence can be special, too. Your time is the greatest gift you can give now. Try to dedicate at least 15 minutes each day to the person that doesn’t involve caring for them. You don’t need a plan or agenda or have to do anything at all. Taking the time to just be with one another may also allow you to talk about what’s important, if that feels right.
Keep in mind that these last moments are a critical time in your relationship with the person you are caring for, in your own life journey and that of your family and friends.
Conversations at The End of Life: Care and Support
Part two of our documentary series, Conversations at The End of Life looks at how your Circle of Care can be vital in making space for precious moments with your loved one.
Making the most of your time together
The last stages of someone’s life are about connection and intimacy. It is the last opportunity you have to say and do the things you want or need to. Try to live each day more fully by sharing not only the light, love and laughter but also the tears and sadness that might come. The memories you form now will become an important part of your personal story.
While the experience of caring for someone is a deeply personal one and everyone will have their own ways of making the most of the time they have left, you might like to consider these:
Spend time together right now: If the person is unable to join in social occasions, they could lie comfortably somewhere and soak up the atmosphere or you could take the gathering to their bedside. Better still, move their bed into the main living area of the house so neither they nor the person caring is cut off from family life.
Do one of those things the person has always wanted to experience: This might be as simple as a trip to the beach or a visit to their home (if they are in the hospital or another facility) to see it one last time. Fulfilling these wishes could help close something open-ended in their lives, giving them a sense of satisfaction or completeness.
Gather family and friends: Share a meal, have a celebration or participate in a special ritual. Take video or photos to record the occasion – you will treasure these later. If people can’t be there in person, link them in using technology (FaceTime, Skype, Google Hangouts, etc.) or social media.
Help the person write letters to those they care about: Help them express how they feel, or prepare cards to give people in the future (for a graduation or wedding, for instance). If they aren’t well enough to write, someone else can scribe for them or they could record a digital note in their own voice. They may even like to reach out to people they have lost touch with over the years.
Resolve conflict or confusion about past events: Reconciling old hurts and letting go of disagreements can help those left behind manage feelings of grief and loss.
Create tangible mementos of the person you love and your times together: These could serve as a personal time capsule – a legacy or heirloom that can be passed down through your family.
Finalise plans: Discuss where and how the person would like to spend their last months and weeks and finalise funeral plans – if they are ready and willing to talk these things through. This will eliminate any uncertainty about what should happen, help you plan and prepare for the period ahead and give you peace of mind that you are fulfilling their wishes.
Bringing down emotional barriers
As painful and confronting as they are, emotional issues can also stop you from spending quality time with someone who is in the last stages of life. If you’re finding it difficult to accept the situation, if you feel uncomfortable in their presence, if you are unable to have honest conversations with them and others about what is really happening, if there is family tension or conflict, then this can prevent you from creating meaningful last moments.
The experience of caring for someone can be very stressful and place a lot of pressure on people. While this challenging time can bring family and friends together and strengthen relationships – including with the person in the last stages of life – it can also have the opposite effect, particularly if the relationships were complicated to begin with.
It can help to remember that time is limited. Though it is hard, try to shift the focus back onto the person you are caring for. Think about what’s important to them now, talk to them about it and prioritise activity to help the person achieve what they want in their final stages of life. Talking openly about what is happening can help you acknowledge and accept the reality that you are losing someone you love. Then you can begin the important work of making the most of the time you have left together.
Leaving regrets behind
Losing precious time with the people you care about can lead to regrets and remorseful sentiments. Feeling like you didn’t spend enough time with the person, that you didn’t get to say a proper goodbye or that things were left unresolved can undermine your sense of closure when they’re gone and make the grieving process more difficult.
While mourning someone you love is painful, knowing that you did everything you could – in both a practical and emotional sense – is important. When making decisions about how to experience these last months, weeks and days, it can help to frame them in terms of ‘risks and regrets’. Ask yourself: “What will I regret if I don’t do this now and what risks am I prepared to take to do it?” Asking this simple question can provide clarity about what’s really important to you and the person you are caring for at this crucial point in your lives.
Ask yourself: “What will I regret if I don’t do this now and what risks am I prepared to take to do it?”
Creating legacy and memories
Reflecting on how and what you want to remember can help prepare you and preserve precious memories for those who are left behind. Think about who should be involved and don’t forget to include children. Participating in these activities can help kids understand what they see happening around them and feel like they are a part of it.
Gathering and sharing records, notes, memories or mementos can bring up a lot of different emotions and sometimes the hardest part is getting started. While you and your family and friends may be struggling to come to terms with the fact that the person is in the last stages of life, try not to let that get in the way of having those important conversations.
Here are some ideas for recording memories and legacy:
Write in a journal or make a scrapbook.
Record conversations in audio or video format.
Look at old photographs and share stories about them.
Choose objects (jewellery, books, recipes, plants, jokes, furniture, pictures or ornaments) to give to particular people as mementos. Record and pass on the stories that go with each of these gifts.
Choose a favourite prayer, spiritual reading, hymn or religious occasion to remember the person.
Make a note of favourite novels, movies, celebrities, momentous occasions, family stories and characters.
Scan photos and documents to create a PowerPoint presentation, printed photo book, website or blog.
Make a film with your loved one or create a playlist of favourite songs.
Meet Violet guide, Rose.
Rose can help you navigate the final stages, because, like all our guides, she brings lived experience as well as extensive training. "In the space of just over two years three people in my family died; my father, my sister and my mother," shares Rose. "I’ve always felt very strongly that there is a need for someone to help ease that path."
"As a guide I hope to be able to gently guide you, show you some support and kindness"