Caring for yourself while caring for someone diagnosed with NET

What can I do to support my own well-being?

Caring for a loved one with NET may be a complex and demanding role, which can take a lot of time, energy and resources.¹ Many people become exhausted and overwhelmed by trying to combine caregiving responsibilities with their own every day and working life. They may be so focused on the needs of those they are caring for that they forget about their own needs and may even ignore discomfort, such as stress, illness, sleep deprivation, anger and depression.² Studies have shown that caregivers frequently report greater difficulties with their mental/emotional well-being and physical health than non-caregivers.³

Therefore, when caring for someone else, it is important to take care of yourself, too. When your own health is in a good state, it may be easier for you to give better support to the person you are caring for.

Here are a few tips to support your own well-being:

• Take time for yourself, get enough rest and take regular breaks, even if it is just a few minutes a day.

• Take time for your own hobbies and social activities, like visiting other people, riding a bicycle, reading a book, going for a walk, or do anything you enjoy.

• Don’t forget about your physical needs like eating and getting a good amount of sleep.

• Don’t forget about your own health and keep up with your doctor visits and medications.

• Give yourself credit for your efforts –  by providing care, you are making a huge difference and are doing the best you can.

• Talking to someone in a similar situation who understands what you are going through can give you some relief.

• If you feel exhausted, stressed, depressed or are having trouble sleeping, it is important to pay attention to these symptoms and get professional help if needed.

Asking for help and support

While caring for a loved one with NET, it may sometimes feel like you have taken on more than you can handle. If you feel like things are getting out of control and becoming too much for you alone, do not be afraid to ask for help.

Support from others may help you to stay healthier and have more energy for the long run. Also, other people may be able to help out with things you do not have the time or skills for.⁴ Ask for support from family and friends and make use of available community resources to build up your own network of support. There are many people out there who can help make your life easier during this challenging time.

When family and friends offer their help, think about tasks you can give away and be specific about the kind of support you need. You may need help with tasks such as cooking, cleaning, doing the shopping or going to the pharmacy. Ask when and for how long they can be available and which jobs they prefer to do. Making a schedule who is responsible for which task can be helpful. It might also be a good idea to keep a list of possible tasks that need to be done in the near future to plan ahead.

If the disease of your loved one has progressed and family support is no longer enough, do not feel guilty to explore other options of support. Social services, such as assistance with meals or transport can offer some relief. In some cases, professional home care services or a home health aide which helps patients with daily living activities in their own home may also be an option. If you feel that the best solution is care outside the home, you might consider an assisted living facility, adult day care or residential care as another option.

Overall, it is important to be honest and open with the person you care for. Talk about your needs, address personal boundaries and limits, and try to make important decisions about care together whenever possible.

Support groups for families and friends

Connecting with others who understand what you are going through is essential for maintaining your strength.

Support groups for families and friends who are taking care of a loved one are a great way to share feelings, needs, experiences and concerns as well as exchange practical tips for making life a little easier. In these support groups, people in similar situations can connect, create a sense of community, feel understood and feel less alone.

If you are looking for a local support group for families and friends, it might be a good idea to talk the medical team or hospital staff of your loved one and ask them if there is a group they can recommend.

You could also take a look at our Patient Advocacy Groups (PAGs) page, which includes a detailed overview and links to several patient organizations. Some of these may offer support tailored to families and friends.

References

1. Chua GP., et al. Caregivers of cancer patients: what are their information-seeking behaviours and resource preferences? Ecancermedicalscience 2020;14:1068.

2. Sklenarova H., et al. When do we need to care about the caregiver? Supportive care needs, anxiety, and depression among informal caregivers of patients with cancer and cancer survivors. Cancer 2015;121:1513–1519.

3. Roth DL., et al. Family caregiving and emotional strain: associations with quality of life in a large national sample of middle-aged and older adults. Qual Life Res Int J Qual Life Asp Treat Care Rehabil 2009;18:679–688.

4. Caring for the Caregiver. National Cancer Institute (NCI). 2019. Available at: https://www.cancer.gov/publications/patient-education/caring-for-the-caregiver. Accessed May 23, 2024.