Question 1

Who is the discharge planner, and when is the discharge meeting?

Accepted Answer

Who answers it: Your nurse, on day one of the admission. What to write down: Name, extension, meeting date.

Question 2

I am the designated caregiver. When will I be shown the care tasks?

Accepted Answer

Who answers it: Charge nurse. What to write down: Date/time of the teaching session; who did it.

Question 3

What exactly are you ordering: home health, palliative care, or hospice?

Accepted Answer

Who answers it: Attending physician. What to write down: The word they used, and the agency name.

Question 4

Walk me through every medication change, and give it to me in writing.

Accepted Answer

Who answers it: Pharmacist or discharge nurse. What to write down: Morning / evening list; what was stopped; date.

Question 5

Which equipment is being delivered, from whom, and on what day?

Accepted Answer

Who answers it: Discharge planner. What to write down: Item · vendor · delivery date · phone.

Question 6

Does our ALS clinic know we are here? Who is calling them?

Accepted Answer

Who answers it: Discharge planner / you. What to write down: Clinic contact name; date you called.

Question 7

Who do I call at 2 am if something goes wrong the first night home?

Accepted Answer

Who answers it: Discharging nurse. What to write down: Number, and whether it is the agency or the hospital.

Question 8

What are the signs that will make you raise each of these decisions, and can we talk about them now?

Accepted Answer

Who answers it: Clinic neurologist and respiratory therapist. What to write down: Each decision · the sign · the date you talked.

Question 9

Is the advance directive on file here, and at the hospital?

Accepted Answer

Who answers it: Clinic social worker. What to write down: Where filed · date confirmed.

Question 10

Who holds medical POA, and does everyone in the family know?

Accepted Answer

Who answers it: The family, in writing. What to write down: Name · phone · copy location.

Question 11

When would hospice be an option, and what would change for us?

Accepted Answer

Who answers it: Palliative care team. What to write down: Their answer in their words · date.

Question 12

If we say yes to breathing support, what does a day look like? If we say no?

Accepted Answer

Who answers it: Respiratory therapist. What to write down: Notes · questions still open.

Question 13

Can these decisions be revisited later, and how?

Accepted Answer

Who answers it: Clinic neurologist. What to write down: Their answer · date.

Question 14

What is included, and how do we reach you at night?

Accepted Answer

Who answers it: Hospice intake. What to write down: Phone · what is covered · equipment coming.

Question 15

What respite is available, and how do I ask for it without feeling I am giving up?

Accepted Answer

Who answers it: Hospice social worker. What to write down: Options · how to book · who to call.

Question 16

What do you need from me, and what should I stop doing?

Accepted Answer

Who answers it: Hospice nurse. What to write down: Their list.

Question 17

What bereavement support is there for the family, and for how long?

Accepted Answer

Who answers it: Hospice. What to write down: What · who · for how long.

Question 18

Would you be willing to talk to a family who is where you were two years ago?

Accepted Answer

Who answers it: ALS Crowd, to the former caregiver — when they are ready. What to write down: Yes / not yet.

The caregiver's journey through MND

We just got the diagnosis