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 Many people who are facing a serious illness or the end of life prefer to stay at home as long as possible. If your loved one has a life threatening illness and wants to be in a home setting, it probably means someone must be available to help with the tasks of daily living and healthcare. Who will provide this help? Every family situation is different, and not all people are cut out for the demands of caregiving.
Following are some tools to help your family assess who might be involved in your loved one’s care. Keep in mind that “family” doesn’t always mean blood relations—it could also mean a chosen community of close friends.
Who Could Be a Caregiver?
The following questions are useful conversation starters between you, your loved one, and other family members.
- Is there someone who seems a logical choice to become the primary caregiver (spouse, partner, adult child, close friend)?
- Is this person willing, able, and prepared to take on this role? (Use the "Should I Become a Caregiver?" tool below to consider this important decision.)
- Are the patient and family willing to accept help from hospice?
- Are the patient and family willing to accept help from the community (e.g., “meals on wheels,” adult day care, volunteer, student visits, etc.)?
- Are the patient and family willing and financially able to seek professional help (case managers or social workers, financial planners, professional caregivers, etc.)?
- Are the patient and family willing and financially able to hire a professional nurse and/or a home healthcare aide? Typical rates for home nurses are $70-$100/hour; for home aides, $10-$25/hour.
- Around-the-clock.
- Full-time (about 40 hrs./week).
- Part-time.
- For respite or emergencies only (a few hours here and there).
- Never
- Even if someone has agreed to be the primary caregiver, he or she should not be expected to do everything. Make a list of family members and friends who might be willing to share the responsibility, even if it’s only to offer occasional relief. Registered members of CareCommunity can create a Personal Community that will help you coordinate care sharing among friends and family members. For instance, the Scheduler tool in your Personal Community can help friends and family members sign up for specific tasks or assistance you may need.
Should I Become a Caregiver?
 While caregiving offers spiritual and emotional rewards, it can also be a difficult, even grueling, process. According to experts, the most successful caregivers are those who have the time, live close, and have the kind of emotional bond with the care recipient to sustain the effort that’s required.
Becoming a caregiver doesn’t have to be an automatic duty, even when the care recipient is a spouse, partner, or parent. It’s a good idea to consider whether you’re prepared to become a caregiver, and if so, how much of your time you’re willing and realistically able to devote to the role. The following questions can help you and other potential caregivers make this decision.
- Do you live near enough to the care recipient to be an effective caregiver?
- Do you have any physical, emotional, or mental issues that might limit your caregiving abilities (e.g., an illness, injury, or handicap)?
- Are you able to take on the role of caregiver given your responsibilities?
- Are you prepared to take on intimate caregiving tasks, such as nursing and personal care (dressing, bathing, using the toilet, etc.)? Are there some things you feel you just can’t do? Can you get help with these things?
- What changes might you have to make in your life to become a caregiver? Are you willing to make these changes? (Circle all that apply)
- Move to the care recipient’s house.
- Move the care recipient to my house.
- Take a leave of absence from work.
- Reduce or change work hours.
- Get help to care for children; less daily involvement with children.
- Get help, possibly from strangers, to care for loved one (professional and/or volunteer).
- Stay in the house with the care recipient a lot more.
- Deal with loss of privacy.
- Reduce time spent doing hobbies and other activities.
- Make changes necessary to deal with financial impact.
- Other ______________________
- Is your relationship with the care recipient strong (and flexible) enough to support the emotional impact of changing roles within the family (i.e., spouses caring for partners; adult children caring for a parent who has traditionally cared for them)?
- Are you up to the emotional challenge of caring for a loved one in declining health? Who is near the end of life?
- Do you have a support system to help you cope (friends, family, counselors, spiritual advisers, outside activities)? Are you willing to seek help and support when you need it? [link to getting help tool]
- Can you take on caregiving responsibilities without resentment?
- Are you willing to educate yourself, your loved one, and your family about your loved one’s illness, care program, and end-of-life planning?
- Are you willing to take over financial and other practical decisions for your loved one, if necessary?
- Are you willing to find out, and respect, your loved one’s wishes regarding his end-of-life care?
- Are you willing to advocate on your loved one’s behalf with medical teams, attorneys, and financial advisers?
- As much as your situation calls for, are you able to bear the financial burden of caregiving?
- As a care recipient’s illness progresses, she may experience emotional challenges. Are you prepared to work with a resistant, unappreciative, or difficult care recipient?
- Do you feel that you “have to” become a caregiver, even if you’re not sure that you want to? Why?
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Click the play button on the audio player to hear about Kate's responsibilties as a caregiver for her father.
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