Caregiving for someone with arthritis can be a significant life change for many people, including the person receiving care. The Arthritis Society connected with individuals who provide or receive care for arthritis, and based on their input, produced the following top 10 Do’s and Don’ts of caregiving.
1. Don’t make Assumptions
The person you care for may be closely related to you as a spouse, partner, friend, or parent, which might make it seem easy to predict what the other person may need or want. Instead of making assumptions, try open conversations about what their needs are, and how they would like to receive your help, if at all.
2. Do Ask
It’s important to ask how you can be helpful and what might be needed. It’s also important to request permission before touching or moving an assistive device, or before helping with more personal tasks, such as bathing. Even if you have known the person receiving care for a long time, it is always best to ask what someone needs without assuming it will be the same answer each time. Follow the lead of the person receiving care.
3. Don’t Expect every day to be the same
Providing care can be unpredictable. Even with a regular care schedule and routine in place, life is unpredictable, and we’re all human. You, or the person you care for may have an off day, or something you had planned might change last minute. Consider planning for the unexpected and try to maintain flexibility in your care. Patience and empathy are key aspects of caregiving and can make a big difference for the person receiving care.
4. Do go with the flow
Since we can’t predict the future, and things can change from day to day, or sometimes hour to hour, try to make the most of the moment you are in. If the moment is difficult, it will pass. If you’re in a moment of enjoyment, savour it, and remember these moments the next time you have one that doesn’t feel quite as nice.
5. Don’t get to the point of burnout
Signs of burnout include feeling overwhelmed, stressed out, irritable, angry, easily frustrated, and emotionally and physically exhausted. Burnout can happen very quickly, or it can be something that accumulates over a long period of time. The signs of burnout are not always noticeable right away, and this makes it easy for things to get worse quickly. It is important to practice self-care and to have an outlet for your stress that is separate from the person for whom you provide care.
6. Do Take breaks and respite
Taking scheduled breaks, keeping active with your own hobbies and interests, as well as maintaining friendships can all help to alleviate the stress involved in providing care for others. Sometimes taking these smaller breaks is not enough time to recuperate from burn out or longer ongoing care needs. Consider using a respite service, where someone from a community agency can come into your home to provide a few hours of primary care so you can take a break.
Some community services have free volunteer visiting programs, which may give you a chance to take some time away. Or consider overnight programs where your loved one can stay from a few days to a few weeks to help you both have a more extended break. Some seniors’ centres also offer drop-in day programs for older adults. To find out more about services in your area, visit www.211.ca or dial 211 from your phone.
7. Don’t withhold care
Being on the receiving end of care can make people feel vulnerable and exposed. This can be especially true if the person receiving care is dependent on care for basic needs such as toileting, eating, or hygiene needs. As a caregiver, it is easy to sometimes feel frustrated, or not in the mood to do a certain task. If you are experiencing these symptoms of burnout, it is important you seek additional support for yourself, and to ensure that your loved one receives the care they need when they need it. Do not withhold care because you do not feel like providing it, or if you feel frustrated or upset about something else that happened in your relationship with them. Everyone is entitled to a sense of decency, dignity, and respect.
8. Do Communicate
Communication is the key to any relationship, and especially in caregiving. Follow the lead of the person receiving care to ensure they feel respected, and boundaries are met. Open conversations about caregiving tasks can help clarify any uncertainty in the type of care that is expected, or what you are willing to provide as a caregiver. Caregiving is a team effort, and any unresolved issues can lead to resentment. Work together to solve any issues that may come up.
9. Don’t call your loved one a burden
If you are a partner or spouse, friend, or close family member of the person receiving care, it is natural that you may want to vent your frustrations about caregiving to them but be mindful that this can place additional stress on the person receiving care, who might feel like a burden to you as the caregiver. No one wants to feel like a burden to others, and this is often an area of concern to those receiving care.
Providing care for another person can cause burnout, but the needs of people who receive care are not the cause of this burnout. It is essential that as a caregiver, you build and maintain your own social networks that can provide a space for you to vent frustrations or stress without adding additional burdens to the person receiving care.
10. Do find support
Ensuring you are well supported by other friends and loved ones can help alleviate the stress you may be feeling and give you an outlet to vent your frustrations without taking it out on the care recipient. As a caregiver it’s important to maintain friendships and social connections with people outside of providing care. Part of caring for someone else means that you are caring for yourself too. Take the time to call a friend, or meet for a walk, or chat outside of home. You will be of little help to others if you are not able to maintain your own well-being first.
There are several caregiver support networks that can help you connect with others going through a similar experience. Carers Canada provides useful resources and links, while Huddol is an online social network that enables you to connect with and seek support from others in a similar situation. Some provinces also have their own caregiver networks, such as Caregivers Alberta, Family Caregivers of British Columbia, Manitoba Caregiver Coalition, and Ontario Caregiver Coalition.
Caregiving is a process that has a lot of ups and downs. As a caregiver, it is important to listen, become informed, and help advocate for your loved one. To learn more about caregiving for someone with arthritis, visit our Guide for Caregivers of People with Arthritis.