Grief Support Library

Caregiving for the terminally ill

by Deb Sims, MS,RNCS,LCSW, DeeAnn Burnette-Lundquist, Jim Baltzell, MD

With the advent of new types of medical care delivery and new types of insurance controls, we find that demands on the patient's loved ones have changed. This often means a family member becomes the primary caregiver for a terminally ill mother, father, partner, sister, or other beloved family member. This can be an exquisitely painful time as you watch your loved one's health deteriorate and you grieve your anticipated loss. While all these emotions are happening inside, you have now assumed the role of being your loved one's caregiver.

I was my husband's primary caregiver during his 10-month battle with cancer. From that experience, I have learned many things. Caregiving is probably the most wonderful gift of love you can give another person. I would like to share with you some things that may help you as you assume this very important role.

Possibly the most important thing is to ask your loved one's doctor(s) questions about the medical aspects of your loved one's disease and what special care is required.. If you don't understand the answers, ask them to explain it in more basic terms. Physicians cannot know your concerns unless you share them. Be sure you understand everything, and keep daily notes to help you report back to the doctor(s) treating the patient. You may want to take a friend to help you, especially if you know someone in the medical field.

Have a list of questions prepared to ask the doctor when you see him, including:

• What do I do in case of an emergency?

• Are there special dietary needs?

• How are medications to be dispensed? What symptoms are each medication for?

• Be sure to tell the treating doctor what medications the patient is on that are not prescribed by him. Due to interactions of many drugs, this is very important.

• What are the plans for controlling pain?

• What home health care by professionals will be provided? Do we qualify for hospice care? What other medical support is available?

• Are support resources available for me as the caregiver?

• Ask for instructions on any special medical procedures you will be performing at home. Keep in mind as you are learning these techniques that you will be at home without an instructor when you administer this care. Make step-by-step notes, and explain to the instructor what you are doing so they will go slower.

• Ask any other questions or concerns you have specific to the particular disease.

• What will be likely symptoms in the coming days? When should you call and what is to be expected?

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