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 a lot about me – being the cause of my grief and “using up” my life.
Prior to beginning, consider taking a self-inventory by openly and honestly answering the questions listed. Have conversations with the person who is ill and other family members, if appropriate, to set expectations; discuss your role and other family, community, and healthcare involvement; and other details and considerations for at-home caregiving. Click each category to view some questions to consider.
- Why am I the caregiver? Is caregiving something I can and want to do?
- How many hours per day or per week must I commit, and where will I be giving care?
- What do I know about how the illness may progress and how care needs, physical demands, and time commitments may change?
- How do I feel about caregiving? Conflicted? Confident? Nervous? Unsure?
- Is it something I want to do? Am I okay with certain aspects of caregiving but not with others?
- Am I physically strong enough to do some of the tasks required of me?
- Is this something that would be very difficult or even impossible for me to do?
- What tasks will I be doing? Am I able to do these? Am I comfortable doing these (e.g., administering medications, helping with personal hygiene, moving the patient in bed or from bed to a wheelchair)?
- Will I be making the caregiving decisions myself? If not, who will be deciding with me? Advising me?
- What other responsibilities do I have? Family and children? Work?
- Will I need to take time off work? Are there work-related supports or benefits for me (e.g., paid leave, counselling)? Can I manage financially?
- How will I feel if I cannot do this, no matter how much I would like to? How will the person who is ill feel?
- Does the person who is ill agree to having me as a caregiver?
- What kind of caregiving help is needed? How will care needs change over time as the illness progresses?
- Are they comfortable receiving care from me?
- Are they comfortable receiving help with certain caregiving tasks such as personal hygiene and toileting?
- 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 who is ill needs 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 ample lighting, especially on stairs?
- As the illness progresses, will it be possible to transfer the person who is ill to a hospital or facility? Is the patient aware of this possibility and comfortable with it?
- 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 take on what?
- What other family and friends are able to assist?
- Will I need any special equipment such as a ramp, wheelchair, or hospital bed?
- Will I need other specialized items, such as soaker pads, incontinence products, or medical supplies? How will I obtain them?
- 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 give to them and the primary caregiver?
Thinking these things through and being clear on your role, what resources are available, and how care needs may change can help you understand what to expect from your caregiving role.
Caregiving at home is a monumental 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 perform some parts of care from an alternative location such as a long-term care or palliative care facility. Talk to your healthcare professional to see what other arrangements can be made and what aspects of care you can help with.