This section includes important information about you, the caregiver.
- Why Your Wellness is Important
- Your Relationship with your Care Recipient
- Rights and Responsibilities
- Your Loved One’s Role in their Care and Decision Making
- Who is Caring for You?
- Caring for Yourself while Caring for your Loved One
- Being Out of the House and Away from your Care Recipient
- Peer and Professional Support
- Self-Care Strategies, Activities, and Exercises
1. Why Your Wellness is Important
After the initial shock of your loved one receiving the diagnosis of a life-threatening condition, one of your first thoughts may be, “How will I get through this?” Your hope may be to remain alongside your person through part or all of the journey. Whether it becomes a marathon or a short, intense sprint, Coping with an Impending Death can leave you feeling spent.
In caring for someone else, it can be very easy to put aside your own needs. But to be able to provide the best care you can, it is essential to also care for yourself.
- You will need both physical and emotional strength to see you through your caregiving journey.
- You will need energy and focus so you can be there to care for the person who needs you.
- As hard as it may be to think this far ahead, you will need to be well as your life continues after your care recipient passes away.
2. Your Relationship with your Care Recipient
Caregiving will challenge you in many ways, perhaps more than you expected. The nature of your pre-existing relationship can strongly influence your caregiver/care recipient relationship as end-of-life approaches.
Even in the most solid and respectful relationships, there will be bad days. It may have nothing to do with your energy or your person’s level of cooperation. Sadness may overwhelm you. It may be due to a secondary diagnosis or complication. It could be waitlists, delays, or lost test results. Or respite workers may be unable to make it on a day when you have something important planned. Perhaps your sweet mum’s cognitive decline is making her argumentative and resistant to care.
There is another reality though. Some of us give care to someone for whom we do not have warm feelings—an estranged sibling, an ex-spouse, or an abusive parent. Giving care at end-of-life can be our final chance to heal old wounds and erase regrets.
3. Rights and Responsibilities
In your role as caregiver, it may be helpful to know the rights of your care recipient as a patient of the Nova Scotia Health Authority. The booklet Your Rights and Responsibilities: Patient and Family Guide (2019) will help you understand your person’s rights and what the health care system expects of them and, by extension, of you.
Author Jo Horne has written several books on caregiving, among them Caregiving: Helping an Aging Loved One. That publication includes The Caregiver’s Bill of Rights, and you can use this link for a printable version to use as a reminder that you are an important part of this end-of-life experience, that your wellness matters, and that it is not selfish to maintain your quality of life throughout your caregiving role.
4. Your Loved One's Role in their Care and Decision-Making
There are care recipients whose dignity and sense-of-self comes from maintaining as much independence as possible. Doing things for oneself, however small, can give a person a sense of confidence and control, even if it is brushing one’s teeth without assistance. By all means, encourage them!
In finding a balance of who does what, Caregivers Nova Scotia’s Where to Begin Guide may be a useful planning tool. It contains a checklist of tasks and a designation for each - will this be carried out by your care recipient, by you, or by a healthcare provider or other. If you need help from others, please call our Caregiver Support Coordinators to discuss your options.
The person receiving care may or may not want to be involved in end-of-life decision making. It is possible that they are more comfortable turning all control over to you. On the other hand, they may want to have discussions about their care and to be a part of decision making, or they may wish to retain full control over all decisions.
The doctor, nurse practitioner, or palliative specialist team should be able to tell you what end-of-life may be like for someone with your person’s condition, although no clinician can predict with 100% accuracy what lies ahead. They may, however, be able to provide you with information to help you imagine and plan for your tasks in the future using questions such as the following.
- What is the worst-case scenario?
- What is the best-case scenario?
- What, on average, happens to someone with this condition?
- Are there any complications of which you should be aware?
5. Who is Caring for You?
It is easy to get lost in caregiving. You may start off with good health and the best of intentions to maintain wellness but, as time passes, you start giving up small things. As your focus on caregiving intensifies, it may crowd out many of the things that give you dimension, wholeness, and identity. For many caregivers, these things may seem trivial when compared to your care recipient’s approaching death. Yet if you raise your head up and look forward, you may realize that there must be some balance in your life - it cannot be totally consumed with giving.
As a caregiver, you need support. Someone you can count on and who will keep an eye on you. Someone whose role it will be to remind you to eat, to breathe deeply, to take a break - all those things you have done for yourself until now.
6. Caring for Yourself while Caring for your Loved One
Perhaps the most important aspect of caring for yourself is learning to ask for and accept help. Once you have asked, you may also need to adjust your own expectations because others may not give the same quality care as you. This recognition may even allow you to start thinking about whether you are setting a higher standard for the care you provide than is really necessary. We have some more ideas on this topic in the section called Asking for Help in Living and Dying at Home.
If you are struggling with guilt when taking time to yourself, it may help to consider what it would be like if the roles were reversed. If you were the care recipient, for example, would you want your caregiver to sacrifice their health and well-being to take care of you? Keep in mind that your loved one may also be feeling guilt about the demands that are being placed on you, the caregiver.
You will need time for yourself. Explain to your care recipient you need at least a few hours for yourself each week that is not spent on errands and chores. If you feel your resolve weakening, please revisit points 1, 2, 5, and 8 in The Caregiver's Bill of Rights. Note: If the individual has cognitive impairment, they may not be able to understand your need for time to yourself.
7. Being Out of the House and Away from your Care Recipient
Respite is defined as a short break from a difficult situation. Attending a fitness class, going to a place of worship, having lunch with a friend, going to a support group, visiting an art gallery for a few hours - these are all good ways to take a break from caregiving. They are also very good wellness strategies for you.
When possible, keep doing the activities you enjoy outside of your caregiving role. If you played golf but the idea of playing 18 holes is just too daunting, try getting out to a driving range to hit a bucket of balls. If you enjoyed walking, getting out even for 15 or 20 minutes can help you feel energized. Whatever you enjoy doing try to keep it up, even if it needs some modification.
Many caregivers have supportive immediate and extended family who check in often and offer help regularly. Sometimes, however, family members do not have a full appreciation of what the caregiver has taken on. They may not take seriously an ambiguous or unclear request for help. One caregiver called a family meeting, expecting resistance to her request. “I was struggling and needed to get out of the house at least once a week. I chose Wednesday nights so I could attend a yoga class at the community centre. I called a family meeting and asked our adult children to cover this time period, each committing to one evening per month. Some were happy to help. For the others who I knew would be resistant, I reminded them that I give care round the clock every day to their Dad and that I expected them to dig deep and make the time to spend with their father and give me a break. Sometimes it takes tough talk for them to realize how hard this is on me. It’s working out ok so far.”
Hired respite care is also available throughout the province. Several options are outlined on the Respite Care page of our website.
Consider too that your taking a break may be beneficial to your loved one. They may experience less guilt for the responsibility that caregiving has placed on you. They may also appreciate spending time with someone else - someone who hasn’t heard all their stories.
8. Peer and Professional Support
No one understands a caregiver like another caregiver, your peers in your current caregiving journey.
When you talk with friends or family members, unless they too have that lived experience as a caregiver they probably can’t appreciate the depth of your fear, the extent of your frustration, or how completely exhausted you have become.
Peer support can be one of the most satisfying and helpful resources available to you. No one has had exactly the same experience as you, but it will put you in the company of others who ‘get’ the issues. They know that when you say something awful and harsh to your care recipient, it is not a comment on how much or little you care for them, but rather an expression of your frustration and fatigue. Rather than receiving judgement, you will receive acknowledging nods from other caregivers who have felt similarly. They will confirm that, yes, this is every bit as hard as you think it is.
Caregivers Nova Scotia currently offers 24 monthly Caregiver Support Groups around the province. All are free and open to any caregiver regardless of the medical condition present. Trained facilitators will guide the conversation and gently bring it back to the focus - how is the caregiver doing? They may also bring new resources, educational material and, when requested by the group, will try to schedule guest speakers. All of our facilitators are now, or have been, caregivers - so we understand. To find out more about Caregiver Support Groups, please click here.
From time to time there are caregivers for whom a peer support group is not the right forum. Perhaps the caregiver is stuck in a situation for which there seems no escape and they are unable or unwilling to make even small changes to help themselves. For those caregivers, professional counselling might be a productive approach and you may find it helpful to speak with a healthcare professional such as a counsellor.
A counsellor can help by:
- suggesting strategies for managing relationships
- giving you ideas for keeping communication open and positive
- advising you of ways to find balance in your role as caregiver
A list of therapists in Nova Scotia available here.
Many healthcare professionals can offer you some level of counselling support. It’s always a good idea to start by speaking with your family doctor, nurse practitioner, or other health care professional. You may then be referred to more specialised counselling.
If you are employed, there may be an Employee Assistance Program or other coverage through your insurance plan that may help offset the cost of professional counselling or therapy.
9. Self-Care Strategies, Activities, and Exercises
If you are not able to get away as often as you would like, there are many free and low cost activities you can enjoy without leaving home. Please speak to your health care provider before starting any new exercise program.
- Remember to Breathe
- Journaling and Journaling with your non-dominant hand
- Gentle exercise and stretching. For those who may need to begin gently, Community Links has created Fitness in the Kitchen, 8 gentle exercises you can do to maintain or increase your health.
- Yoga - a 17-minute practice and a 43-minute practice
- Detox Foot Soak (while listening to a guided visual meditation)
- Listening to music and listening to sounds of nature
- Watching beautiful scenery, Watching flowers bloom, and Watching classic comedies
- Singing and sing-a-longs
There are also useful articles that may help you to view yourself and understand your own needs, even during your loved one’s palliative experience.
Throughout the palliation experience, it is recommended that caregivers practice self-care and attend to their own physical, emotional, social, and spiritual well-being. Accessing relaxation for your mind and body may be especially difficult to fit into a schedule. There are many techniques that can be used to practice self-care and cultivate mindfulness during stressful times. Here's everything you need to know about body scan meditation including how to do it from headspace.
There are aspects of your loved one’s life and death that you will be unable to control. The article 5 Myths About Dying That Too Many People Believe may help you to have reasonable expectations from yourself and paid care providers.
Other Useful Articles:
How to prepare for a good end of life (note US references)
Living lessons: a guide for caregivers (booklet)