Adapted from FCBC Resource Guide for Family Caregivers
Caregiving can change your relationship with your family members, whether the person needing care is your parent, spouse, another relative, or an adult child. This change often brings up many issues and emotions. If you find that you are caregiving for elderly parents or other relatives, you may identify with the following challenges. Keep in mind that not all families experience all these issues, and not all families find these issues to be problematic. It is important to remember that everyone experiences caregiving differently.
What are some of the challenges you can expect?
- A shift in dependency usually results when parents become frail and need assistance to maintain their independence. As the parent-child dynamic changes, tensions or difficult emotions may arise.
- Finances become an issue when the care receiver’s resources are insufficient to cover the expenses of daily living, health, and housing. Many families have trouble talking about money, and this important topic is often left until too late.
- Caregiving doesn’t happen in isolation from other roles. The compounding effects of caregiving and other roles such as parenting, employment, maintaining a home and social ties can increase stress and feelings of isolation.
- Lack of knowledge about the aging process makes it hard to know if a senior’s behaviour is normal or a cause for concern, and difficulties with decision-making.
- Emotional responses to the changes that accompany aging and frailty and the demands of caregiving can surprise many.
- Lack of experience about how the health care system works and community resources can result in inappropriate expectations from the “system,” poor decision-making, time-consuming run-around and inflated emotional states during crisis.
- Difficulty setting limits on involvement, coupled with unrealistic expectations, a strong sense of duty, loyalty, guilt or a commitment to caring can feed an inability to say no to demands and expectations of family members or the health care system.
- Lack of planning for the future is common and can result in the avoidance of important discussions. Situations can become really tense if these hard-to-have discussions come up during a crisis. Typical topics that are helpful to discuss include: housing needs as frailty increases; finances; how caregiving will be carried out in the family; the care receiver’s preferences regarding heroic measures; and dying and death, after death services, power of attorney and distribution of the estate.
What does it mean to be a care recipient?
Just as caregivers have mixed feelings about caregiving, the person receiving care is also likely going to be experiencing strong feelings. From a care receiver’s perspective, many things change as their need for care increases. Many of these changes are very difficult and may cause the care receiver to feel afraid, angry, ashamed, frustrated, helpless, lonely, or depressed. Care recipients experience:
- Threats to independence such as loss of a driver’s license, dependency on others, health problems that compromise senses and mobility;
- Compromised dignity, such as embarrassing health problems, lack of financial resources, having to ask for help with daily living activities, having to accept help, and being around others who do not respect elders;
- Personal safety within one’s home, in public places and with one’s caregiver;
- Worry, inconvenience, expenses, and losses associated with health problems;
- Financial management and concerns about having sufficient finances to get to the end of one’s life;
- Social isolation due to immobility, lack of transportation, compromised senses, living far away from others, and loss of friends through death or illness;
- Grieving the loss of youth, health, life, friends, independence, meaningful work, and possibly preparing for one’s own death; and
- Loss of power in decision-making about matters related to one’s own life.
These experiences and strong feelings can lead to responsive behaviours creating tension between caregivers and their care recipients.. For example, some people may resist getting help, may refuse to admit they need help or become very demanding. This can be very upsetting for the whole family. Trying to put ourselves in another person’s shoes can remind us that it’s a reaction to the fear of losing control. When they act a certain way, it may reflect how they are coping with changes in independence and loss. Ideas to help the person that you are caring for cope with the situation include:
- Involve the care recipient in all decisions related to their care, unless cognitive impairment limits their abilities.
- Try to set up a caregiving routine so everyone knows what to expect.
- Where possible, involve the care recipient in decisions related to the caregiving routine.
- Try not to over-help. You may be tempted to take over everything; however, try to encourage your care recipient to do whatever he/she can for himself/herself.
- Listen! Reassure! Be respectful!
Recognizing your emotional responses
Being a caregiver can sometimes feel like one big emotional roller coaster. There are many ups and downs with conflicting emotions rising to the surface. It’s natural and normal for caregivers to experience a range of emotions. Sometimes you may feel resentful and angry with the person you are caring for. Or you may feel unhappy because your life hasn’t turned out as you hoped, and you may be frustrated because the same issues come up over and over again and you don’t know how to deal with them. You may feel upset with yourself for not being able to cope with all the moving parts with caregiving and your other roles.
Some suggestions for managing your feelings include:
- First and foremost, be kind to yourself. Self-compassion is essential to overall wellbeing. Being kind to yourself the way you’d be kind to a friend is the foundation to self-care. Self-compassion is “on-the-job” self-care and doesn’t require a break from caregiving like other suggested forms of self-care (i.e. exercise, time alone, etc.). Self-compassion is the ability to notice when you’re struggling – to see and hear yourself – and to feel tenderness for yourself in difficult moments. The demands of caregiving are such that, at some point, all of us will fall short of our own and others’ expectations, so the ability to meet the imperfections of caregiving with self-compassion makes caregiving more sustainable
- Read about caregiving and the challenges involved.
- Journaling: Use a journal to express your thoughts, feelings, and concerns.
- Talk with people that you trust and who can really listen to you. Support groups are a safe and trusted place for caregivers to share their feelings and receive support.
- Ask yourself, “What are your strong feelings about? What are they telling you? What is the purpose of these feelings? What old patterns or messages am I repeating?”
- Distinguish between what you can do something about and what you can’t do anything about.
- Practice “thought stopping” exercises for negative and catastrophic thinking patterns.
- Join with others who are facing some of the same challenges for mutual support.
This sub-section has been adapted from Our Aging Parents developed by Clarissa P. Green, Consulting and Counselling, Vancouver, B.C.Clarissa Green.