Caregiver Guide

Regular physical activity, including therapeutic exercise, has numerous benefits for people living with arthritis, both physical and psychological. Eating a balanced diet is also recommended to help maintain good health. For people with arthritis, keeping up with exercise routines can feel like a chore and may not feel enjoyable, especially if movement causes pain or discomfort. However, movement is key to maintaining mobility and range of motion.

As a caregiver, being able to encourage exercise and movement will help your loved one stay active. Plan regular walks or exercise routines in your daily schedule. Make it a fun activity you can do together. If it is difficult to get outside due to mobility concerns or bad weather, consider alternatives, such as playing interactive video games that encourage movement. Visit Arthritis Society Canada’s 20-Minute Warm Up for the Joints video that can be done while seated, or exercises for osteoarthritis, many of which can be done seated or while lying down. People with inflammatory types of arthritis may need to take it easier during a flare, but they can still continue with range of motion exercises.

Your loved one may be taking medication to help manage the symptoms of their arthritis. Some medications have undesirable side effects, such as nausea, which may impact a person’s appetite or ability to eat. As a caregiver, it is important to understand how these medications may impact your loved one’s ability to participate in daily activities. Use our medication guide to learn more about different arthritis medications. If your loved one is experiencing negative side effects, or is having difficulty managing their symptoms, it is always best to check with their doctor or pharmacist before making any changes or stopping any treatments. It is also important to check with a person’s doctor or pharmacist before administering any new medications to them, including non-prescription medications such as pain relievers or natural supplements. Some arthritis medications might interact with other drugs or supplements.

To help keep track of the medication your loved one is taking and when it was last administered, consider using a medication chart.

Depending on the level of your involvement in providing care, it may also be helpful to support your loved one in creating a medication history to be used for medical appointments, hospital visits, or any time a more thorough medication history may be required. It can also help keep track of symptoms, and how they have changed over time.

Be mindful that not everyone will want their caregivers involved in their medication care, or in knowing which medications they are taking. Some people also take medications for reasons other than arthritis, and may not want to share this information with you. Remember to take the lead from the person you are caring for, and let them decide what information to share with you.

Let’s take a moment to talk about burnout. Burnout is a feeling of emotional, physical, and/or psychological stress caused by repeating the same type of stressful activity over and over. It might not feel like a bad type of stress because you are helping someone you love, and you may not even recognize signs of burnout when they start. Burnout can happen without even noticing it, which might feel sudden and even more overwhelming when this happens.

What can you do to prevent burnout?

• Maintain social networks
• Keep physically active
• Stay involved in or take up a new hobby
• Take breaks away from repetitive tasks

Caring for another person can be very time-consuming and emotionally taxing. It’s important to set aside time just for you so you don’t feel overwhelmed. Below are some tips to help manage stress and burnout, including self-care practices.

• Journaling
• Engaging in personal hobbies and activities
• Making intentional time for self/taking time out
• Mindfulness
• Meditation
• Social supports, and/or therapy
• Sleep
• Eating well (consistent, balanced meals, spaced throughout the day)
• Managing own health needs – prioritizing personal health needs to be best able to help someone else (when possible)
• Create or maintain a routine/schedule
• Plan ahead, but prepare for the unexpected
• Schedule respite care so you can have dedicated time to yourself

Self-care can take on many different forms. It could be as simple as taking a half hour to yourself to read a book, go for a walk, or watch a favourite show uninterrupted.

Self-care could also involve taking a more significant break from care, such as a day or two out of your weekly schedule to visit with friends or family or spend a night away. It could include taking a class or working on a hobby while someone else takes over primary care during a set time each week.

During times when it is difficult to leave your home, consider attending an online class or event. Many options are available through local continuing education programs, libraries, or community centres.
For caregivers who provide more around the clock care, taking larger, more significant breaks away can help break up your schedule and reduce the amount of stress build-up from being the constant source of support for everyone else.

It is very important to build up and maintain your own social support networks, separate from the person you provide care for. As people grow older, it can sometimes feel more difficult to maintain or form new friendships. In order to provide care for someone else, it is essential that you are able to practice social well-being.

If you are struggling to think of people you can call to talk to or enjoy an afternoon out with, try connecting to others through online forums, community centres, signing up for a class, or joining a club or volunteer activity. You may also find it helpful to join a caregiver support group or connect with a mental health professional. Your doctor might be able to connect you to a social worker or psychiatrist funded by your government health plan, or there may be free counselling services you can access in your region or online.

Visiting www.211.ca or calling 211 on your phone can help you learn about services available in your area.

A large part of self-care is prioritizing your own needs, so that you have the capacity to care for others without feeling overworked. Ensuring you have regular breaks will also give you and your loved one each something new to talk about when you return to providing care.

National Resources
Carers Canada

British Columbia
Family Caregivers of British Columbia

Alberta
Caregivers Alberta

Saskatchewan
Caregiver Information and Support: Saskatoon Council on Ageing

Manitoba
Caregiver and Family Supports: Manitoba Health, Seniors and Long-Term Care

Ontario
The Ontario Caregiver Organization
Ontario Caregiver Coalition

Quebec
L’appui

New Brunswick
Social Supports New Brunswick
New Brunswick Caregiver Guide

Prince Edward Island
Prince Edward Island AccessAbility Supports

Nova Scotia
Caregivers Nova Scotia

Newfoundland and Labrador
SeniorsNL: Brochures for Caregivers

Yukon
Yukon: Resources for Caregivers

Northwest Territories
Northwest Territories Caregivers Guide

Nunavut
Nunavut Home, Community, and Continuing Care

It’s important to know your own limitations as a caregiver. There will be some tasks that you may find easier or more enjoyable and others that might make you feel uncomfortable.

If you have been asked to help with bathing, how might you respond?

• “Sure, that’s no problem. Would you like me to help you get undressed, or would you prefer I enter after you are already undressed?”
  • If helping with bathing is a task you are comfortable helping with, this is a good response. It also allows an opportunity for your loved one to decide how they want to approach their bath.
• “I hear that you need help with bathing. This isn’t something I feel comfortable helping with. Is there someone else we can ask to help you with this?”
  • This is a good example of expressing boundaries, but remaining open to still helping your loved one get what they need. Work together to find someone who can help with bathing.
• “You don’t need a bath tonight, how about I help you to bed instead?”
  • Instead of telling someone they don’t need something, try to express that helping with bathing makes you uncomfortable, and try to find a solution that works for both of you.

You’ve been asked to help prepare meals. The person you provide care for eats meat, and you are not comfortable preparing meat. How do you proceed?

• “I’ll cook for you, but only vegetarian meals.”
  • This may be okay with the person you are caring for, but it may not. Always ask to confirm they are okay with what is being prepared. If you can’t stick to the meal plan, consider helping another way .
• “I see on the meal plan this week is a dish with chicken. I’m not comfortable preparing meat, but I would be happy to help prepare any non-meat dishes.”
  • If you know you are not comfortable preparing meat dishes, plan ahead and be clear that this isn’t something you are comfortable doing so you will not be stuck figuring our meal changes last minute.
• “I really don’t like cooking, is there another way I can be helpful?”
  • Its okay to take up other roles instead. Check in with the person you care for to make sure there is someone else who can help with cooking. If not, come to a solution to get more help so they can eat.

While helping Ahmad get dressed, a glass of water accidentally spills on the floor. You immediately grab a towel and start mopping it up, but notice Ahmad’s walker is blocking you from half of it. How do you proceed?

• You casually move Ahmad’s walker out of the way, and continue mopping the water up. When putting the towel away, you forget to move his walker back.
  • While it may have been unintentional, it’s always important to ask permission before moving an assistive device. Its also very important to never leave someone stranded away from their device.
• You ask Ahmad if he can move his walker out of the way so you can mop the rest of the water. He does so, and moves it back into place.
  • If the owner of the assistive device is able to move it themselves, this is preferable, though it may not always be an option. If they are unable to move it, ask permission to move it yourself.
• You ask Ahmad if you can move his walker to mop up the remaining water on the floor, and then promptly move the walker back where it was.
  • Asking to move any assistive device is important, as this is a form of access to movement. Taking away the ability of someone to move independently is not okay. Always move a device back when possible.

Caregiving can be challenging in many different ways. One challenge that can sometimes arise in caregiving relationships is something called power dynamics. Power dynamics describe the power in a relationship between two or more people. Often a person who is able to make decisions for another, take action or inaction that will affect someone else, or who can influence the behaviour and actions of others is considered to be in a position of power.

Positions of power are not always negative, like when a parent uses their influence over a young child to protect them from a harmful situation. It is important to understand that anytime someone is reliant on care from another person there will be a power dynamic in that relationship.

It can be difficult to discuss power dynamics, but it is important for caregivers to be aware that some forms of power dynamics can be very unhealthy and unhelpful to loved ones. In this section we’ll explore some of the ways power can change or influence caregiving relationships.

Often in caregiving relationships, situations can arise where the care provider is also organizing and helping to coordinate many areas of their loved one’s life. This could include helping to support hygiene needs, meal planning, scheduling, or paying bills, as well as coordinating support from others.

It is very important to remember that even though you may be providing care as a caregiver, the person receiving your support should be the person in control of these vital areas.

When all control falls onto the care provider, it is very easy to make changes to suit the care provider’s needs without giving consideration to what is best for the person receiving care. This power imbalance can lead to unhelpful and unhealthy actions that can unintentionally harm your loved one.

To help combat power imbalances, regularly check in with your loved one around what they need and want in each situation. Don’t assume because you asked once that the answer will be the same next time.

It can be helpful to set aside a scheduled time each week with your loved one to check in about how things are going and to talk over any changes either of you would like to make. Making this set appointment will give you each an opportunity to discuss what is working well and what could be improved. It can help to de-personalize this process and focus specifically on care needs. If there is more than one caregiver involved in providing care, invite them to these regular check-ins also, or find a way to check in separately, or update them on any changes each week. This way everyone stays informed, and it takes the guess work out of what is needed.

In speaking with people who receive care for arthritis, the most common areas of concern were about caregiver conduct and wanting to ensure a safe and healthy environment to live free from harm. This section focuses on different forms of power imbalance and ways to identify and address potential areas of concern in your caregiving relationships.

Manipulation can take on many forms and can be exercised both by the care provider and the person receiving care. Sometimes when people are dependent on another person for care, they may use forms of manipulation such as guilt or threats to ensure they are able to get the things they need to survive and to maintain function. Often this is not intentional, though it can still be harmful to the care provider, who needs to maintain boundaries and limitations to ensure they are able to continue providing care.

When a caregiver uses manipulation or guilt to try and get their loved one to do tasks in a specific way, or to refuse a caregiving task, this is a form of unhealthy behaviour, and a potential sign of burnout.

Shaming someone is another form of an unhealthy behaviour, and can come from either the care provider or care recipient. Shaming others, especially for things beyond their control is never okay, especially from those who control access to the items the person may be shamed for – such as a caregiver shaming their loved one for clothing looking shabby when they were dressed by their caregiver.

Gaslighting is a form of manipulation. It is often used by an individual or group to make someone question their choices, second guess their memories, and doubt or question their judgement. It can also include convincing someone that their needs are not important.

Gaslighting often comes about when people are trying to gain a sense of control over a situation. It can happen without realizing it, especially if things in your caregiving relationship feel out of control, or unpredictable. A common example of gaslighting is saying something negative, or insulting to someone, only to then tell them that they are wrong, or foolish when they try to defend their stance.

Another example is setting someone up to answer a question in a particular way, and then demean them when they answer as anticipated.

Example

If you are concerned about the type of power dynamics you may have with your care recipient, seek external help.

1. Ask for guidance from either your loved one’s medical care providers or your own, a social worker, psychologist, or home care case worker.
2. Talk with friends and your own social supports to vent your frustrations outside of providing care.
3. Seek respite options to help in providing care.

Respite is a form of additional help or care provided by external help, or having your loved one spend a few hours at a day program, days or even a few weeks in a residential program to allow you time to have a break and recuperate. Providing care on a full-time basis can be quite exhausting, and it is important to have breaks to maintain your own health and wellbeing.

If people in your care circle are behaving this way, try to talk with them about taking a break from caregiving. If you are not sure about the impact this will have on your loved one’s care, check in with them about how their care has been going, and the things you have been noticing from their other care providers.

If you feel that you may sometimes act this way, or say something similar to your loved ones, it’s important to seek support from a counsellor, or support person who you can talk with. This is not healthy behaviour, and being able to find support for yourself will also help to support your loved one.

If you are approached about your own behaviour by another caregiver on your loved one’s care team, try to acknowledge their concerns, and respond in a way that will best serve your loved one. Everyone brings their own unique experiences to caregiving, and the ultimate goal is to help your loved one to live more comfortably. If actions and behaviour by you or anyone else are negatively impacting this, then it is necessary to take a step back to assess what can be done next. Reaching out to your local 211 service, or community health centre can be a good place to start.