Resource Guide for Family Caregivers
What it means 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 the 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. Some of the issues that precipitate these feelings are:

  • Threats to independence such as loss of a driver’s license, dependency on others, health problems that compromise senses and mobility, and so forth.
  • Threats to 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. Section One Introduction Resource Guide for Family Caregivers5
  • 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.
  • Loss of power in decisionmaking about matters related to one’s own life.

Involve the care receiver in all decisions. Set up a caregiving routine.  Don’t over-help. Listen! Reassure! Be respectful!

These experiences and strong feelings can lead to behaviours that might be difficult for the care receiver and the caregiver. 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, but if you try to remember that it is a reaction to the fear of losing control and that some of the responses are the person’s way of coping, it might be easier to deal with the behaviours. Also try to put yourself in their position and think about how you’d like to be treated. Some ideas to help your loved one cope with the situation are:

  • Involve the care receiver in all decisions related to their care, unless cognitive impairment is at a stage where this is not possible. Remember that it is their life.
  • Try to set up a caregiving routine so everyone knows what to expect.
  • Try to involve the care receiver 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 loved one to do whatever he/she can for himself/herself.
  • Listen! Reassure! Be respectful!