It’s important to ask for help

People tell us that caring for someone in the last stages of life is one of the hardest things they’ve done; it requires deep reserves of strength, courage and resilience. You won’t always be strong or brave; at times you will feel distressed, afraid, confused, overwhelmed and exhausted. It’s common to hear people who have taken on this caring role to say things like:

• I’m trying to give them the best care possible
• I feel like I have failed
• I’m juggling so many different things
• I don’t want it to be a job; I just want to be there for them
• It’s really, really tough. I wish someone would help me
• I had no sense how to navigate that period of my life at all
• Just getting through the day is a big thing
• I needed someone to give me the courage to get through it
• I wish my family and friends understood what is involved in caring
• It was the hardest thing ever, but I’m so glad I did it.

We’ve all heard the old proverb “It takes a village to raise a child”, but those who have cared for an ill or frail person know that the same is true in the last stages of life. Violet has more than 30 years of experience in supporting people who are caring for someone in the last stages of life. We know there is a great deal of emotional and practical work involved and that doing it alone can be both challenging and isolating.

When someone offers help, they’re not just being polite – they genuinely want to. Accepting help will not only ease the pressure you may be feeling to ‘do it all’ yourself, it will also free up time that could be meaningfully spent with the person you’re caring for. Sometimes it’s hard to reach out and ask for help. Often there are many people around us who are very willing to help out, including family, family, friends, neighbours and relatives – perhaps they just don’t know how to or are uncomfortable about asking you directly.

It’s important to remember that you are not alone. If you feel like you are, then talk to your GP about some of the services available in the community that can help you with caregiving, such as in-home care, community nurses and palliative care volunteers. By sharing the caring with others, you will gradually begin to feel that this deeply human experience is, in fact, a normal part of life and what once may have seemed like an insurmountable task can become more manageable. As you become more familiar and comfortable with what happens in the last stages of life, your confidence and belief in your capacity to care for them will also grow.

Building a Circle of Care

We have a simple model called the ‘Circle of Care’ that can help you build a support team for both yourself and the person you are caring for. This method has worked well for many, many people over the past 30 years and has made caring more manageable. Forming this go-to group around you and the person you are caring for can make all the difference to your experience of caring and ensures you are being cared for, too.

Below we’ve identified the tasks and roles that people find typically useful when caring. While not all of these may be appropriate for your particular situation, choose those that are relevant and add others that may be specific to your needs.

• The organiser: This is the person in your family, group of friends or community who you can rely on to get things done. They will help you build a weekly roster that lists all the practical tasks that need doing – everything from medical appointments, preparing meals and lawn-mowing to managing visitors, washing bedlinen and walking the dog. Take a few minutes to think about who might be the organiser in your Circle of Care.
• The spokesperson:This is the person in your family, group of friends or community who will provide updates for people through social media, email, phone calls or messages. It is important that they understand the type of information you are comfortable sharing and the frequency. They will also need to field and answer any questions, acting as a gentle buffer between you, the person you are caring for and the broader group of concerned family and friends. Take a few minutes to think about who might be the spokesperson in your Circle of Care.
• Personal supporters: These are the people in your family, group of friends or community who you feel close to and will look out for you and make sure you are being taken care of, too. They will check in with you regularly to see how you are managing, take you out for a cuppa and a walk outdoors, and offer a hand to hold or a shoulder to cry on. We believe you may need a couple of these people. Take a few minutes to think about who might be the personal supporters in your Circle of Care.
• Medical contacts:This is a medically trained person you can reach out to at any time – day or night – if you have a medical problem with the person you are caring for or a situation that you feel you can’t cope with on your own. They might be your GP, a community nurse or a palliative care worker. Take a few minutes to think about who might be the medical contacts in your Circle of Care. It would be handy to have more than one.

Once you have identified these people, the next step is to clearly ask them to accept their ‘role’ and help you in the ways mentioned above (as well as any others that you feel you may need). Be sure that they agree to always take your call during the period that you are actively providing caring.

To make asking easier for you, we have suggested a simple request that you might find helpful to populate and use. Consider using the following text in a note, email or SMS to the people you have identified:

Dear _______

As you know, I am caring for _______. It is a difficult time for all of us and I want to ask for your help. I’ve thought about the type of support I might need during this time and you were top of mind.

Would you please be the _______ for me throughout this period? This will involve _____, ______, _______ and _________.

Could you also please make every effort to take my calls if I call you (even in the middle of the night!) during the next few weeks and months? If there is a crisis, or I’m just not sure what to do, you are one of the people I’m hoping I can turn to.

I’m really grateful for your support and hope I can return the same to you one day.

Don’t forget to gather the mobile numbers of each person in your Circle of Care and store them in your phone. With your Circle of Care in place, you can relax and breathe a little easier. You are not on your own – you now have a group of trusted friends and supporters you can call on, at any time, throughout the weeks and months to come.

You may also want to form a WhatsApp group (or similar) with these people so they can stay connected with you and each other. If you don’t use much technology, a phone call will do the job.

It’s a good idea to refer the people in your Circle of Care to this website so they, too, can learn more about what is ahead, as well as how they can help and support you on this journey. They can share any questions they may have with the Violet community.

Guiding the way

A Violet guide is another person who can help support you. Our guides have all cared for someone in the last stages of life, so they have some idea about how you might be feeling and may be able to prepare or support you at this difficult time. Using the ‘map’ they’ve acquired from their own experience, they can help you navigate yours, gently guiding you through the challenging situations you may face.
This may include finding ways to cope emotionally, making the most of the time you have left together, how to talk about the last stages of life, knowing what to expect in the final stages, understanding your choices for caring, connecting you with others to help you care and locating the services you need.

While guides won’t make decisions for you, they can help you access the information, tools and resources you might require when caring. Their role is simply to talk about anything you want or need to discuss – by sharing the knowledge and wisdom gained through their own experience of caregiving.

How Violet guides can help

Depending on your emotional or practical needs, here are just some of the ways that our guides can support you as you care for someone in the last stages of life:

• They listen. You can express your feelings openly and honestly, without fear of judgement. Guides can help you work through powerful emotions such as guilt, anxiety and sadness before they overwhelm you. If you need a sounding-board or someone to just download your day with or walk you through resolving a problem, they’ll do that, too.
• They encourage. While a guide will never expect you to talk about anything you don’t want to talk about, they can suggest ways to broach difficult topics about dying and death – only when you feel ready. Once you start these conversations with your loved ones, it may become easier not only to continue having them but also to ask others for help. Guides can also help you practise ways to start these conversations.
• They assess. By talking to you and asking questions – such as how you’re feeling, what concerns you have, who is supporting you, if you are coping – guides can gauge your understanding of, and preparedness for, what’s happening. If you feel that you’re not coping, they can recommend other people or professionals you can speak with.
• They prepare. Acknowledging that a loved one is dying and witnessing the decline of their health can be an incredibly painful experience, regardless of the quality of the relationship you have with them. And it can be difficult to think clearly about the present or how you will cope without them in the future. Guides can help you take the difficult yet crucial steps towards preparing for their loss, before it happens.
• They orientate. It’s common to become fixated on the medical and practical aspects of caring, such as the diagnosis, possible treatments or the dying person’s physical needs. Guides can encourage you to look beyond these, shifting your focus to the emotional work that also needs to be done: accepting that they are dying, spending time with your loved ones, having important conversations, taking time out to rest and recharge, and putting plans for the future in place.
• They do reality checks. When you are so focused on someone else’s wellbeing, it’s easy to lose perspective and a sense of self. As well as adjusting your expectations of caring so you try not to place unrealistic pressures on yourself, guides can remind you to maintain your own physical and emotional health and manage all the other areas of your life (work, relationships, children, finances, future plans). It’s important to think about what this will look like and how you will carry on after the person has died.
• They provide information. This covers everything from the physical changes that take place in the final stages of life; to the choices you have when caring for someone who is dying; and ideas about how to set up your home to make caring less onerous for you and more comfortable for your loved one. It can even include invaluable learnings and advice from their own experience of caring. Guides can also help you identify information gaps or areas in which you may need more support.
• They advocate. Guides can assist you with health, community and other services because they, too, have had to negotiate this sometimes complex and fragmented system. Many people simply don’t know what services are available to them or they can have difficulty accessing them. By providing you with the right information, strategies and contacts, guides can help you seek out the services that might be helpful to you and the person who is dying.
• They help you care.