Chapter 1: What am I getting myself into?
Taking a caregiver inventory
She had a lot of anxiety, mostly about dying, but she also worried about me – thinking that she was the cause of my grief and “using up” my life.
Before you start providing care, consider taking a self-inventory by thinking about some of the questions below. You are encouraged to have conversations with the person who is ill (and other family members, if appropriate) to try to set expectations, and to discuss your role and the involvement of other family, community, and healthcare providers. The questions below will help you consider other details needed for at-home caregiving. Click each category to view some questions in the caregiver inventory.
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Why am I the caregiver? Is caregiving something I can and want to do?
- How do I feel about caregiving? Conflicted? Confident? Nervous? Unsure?
- How many hours per day or per week will caregiving take, and where will I be providing care?
- What do I know about how the illness may progress, and how will that change care needs and time commitments?
- Am I okay with some aspects of caregiving but not others? (e.g., administering medications, helping with personal hygiene, moving the person in bed or from bed to a wheelchair)
- What other responsibilities do I have? Family and children? Work? Are there work-related supports or benefits for me (e.g., paid leave, counselling)? Can I manage financially?
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How will I feel if I can’t do this, no matter how much I would like to? How will the person who is ill feel?
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Does the person who is ill agree to having me as a caregiver?
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Are they comfortable receiving care from me?
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What kind of caregiving help is needed? How will care needs change over time as the illness progresses?
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Are they comfortable receiving help with certain caregiving tasks such as personal hygiene and toileting?
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Do they have an advance care plan identifying their wishes such as treatment decisions? Will I be making these decisions? If so, has this been discussed and written down?
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Is the home safe for me, the person who is ill, and healthcare providers? For example, is there a clear and uncluttered path from the door to where the person might need to go? Is the washroom accessible, and does it need any safety equipment? Have precautions been taken to help prevent tripping, slipping, or falling? Is there enough lighting, especially on stairs?
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As the illness progresses, will it be possible to transfer the person who is ill to a hospital or facility if needed? Is the person aware of this possibility and comfortable with it?
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Will I be getting outside help through community or healthcare resources, or through family and friends, either paid or unpaid? Do I know what resources are available to me and how to contact them? Who will be responsible for what?
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What other family members and friends can assist?
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Will I need special equipment such as a ramp, wheelchair, or hospital bed?
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Will I need soaker pads, incontinence products, or medical supplies? How will I get them?
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I live in a different town or province from the person who is ill. Can I be a long-distance caregiver? What kind of support can I provide?
Thinking about these things and being clear on your role can help you understand what to expect as a caregiver.
Caregiving at home is a very large undertaking and is not always possible for everyone. It is okay if a family or individual is not able to do this. You may still be able to provide some care in an alternative location such as a long-term care facility or local hospital. Talk to a healthcare professional to see what other arrangements can be made and what aspects of care you can help with.
Helpful resources
