What Caregivers Need From Doctors

As a caregiver, I find these things helpful to get me through doctor appointments and occasional reactions to medication. Be sure to keep a good record of everything your loved one is taking and everything the doctors tell you, and it will make your life easier!

1. Before Hand: If your loved one has personal or specific issues to be told to the doctor ahead of time, make an appointment on your own to take care of this. My daughter works in a pain clinic and she has caregivers come in from time to time to meet with the doctor saying, “My father wants to be talked to. Please look him in the eye and deal with him, not me, when we’re in the appointment. I will get all of the information I need, but it is very painful for him to think he is not being addressed about his own health.” If that is the case, be sure and address it without the loved one in the room, not at the loved one's scheduled appointment. It will be appreciated by the doctor as well.

2.  2. Communicate:  Take notes during doctor visits and don’t hesitate to ask questions if you don’t understand something.  I use one of those “Composition Books” that college students use for tests. I keep all the contact info for each doctor in there and write the dates of visits and what each doctor said at the visit. Make sure that whatever you’ve talked about is clear before heading out the door. It’s OK to have the doctor repeat what he’s said, even if it takes several times before you understand it. You’re paying for your visit just like the guy before you did—the one that went over time and made you wait.

3. Get Contact Numbers: Be sure you have all the contact numbers where your doctor can be reached during weekdays and on weekends or holidays. Also, make sure you know what to do when your doctor or on-call doctor cannot be reached.

4. Questions: Don’t let the doctor make you feel like you’ve asked a stupid or inappropriate question. If you are feeling this way consistently, talk to the doctor about it (take him or her aside). It is always better to ask a question than to assume anything. It’s always OK to get a second opinion, or for that matter, a new doctor. Not everyone is a good fit. Don’t worry about hurting the doctor’s feelings, but be sure it is okay with your loved one, to switch doctors.

5. Emergencies: Get clarification on what constitutes an emergency and what does not. Make sure you know what to do and whom to notify in the case of such. Always have a complete list of medications your loved one is taking (dosages, frequency, etc.) on hand whether calling emergency, talking to the doctor, or inquiring from an Advice Nurse.

6. Body Condition: Understand your loved one’s current physical and emotional condition at every doctor visit. If need be, have the doctor describe it in layman’s terms. Don’t assume that everything is as it was the last visit.

7. Anticipated Changes: Be sure you understand expected and anticipated changes in your loved one and his/her disease. This will alleviate needless worry and/or concern.

8. Medication: Always request prescription refills before the weekend so you don’t run out! (It is helpful to type up a list of your loved one’s medications, when he/she takes them, a calendar of all surgeries and/or hospitalizations so that at a glance an emergency provider will know exactly how to help your loved on—see #5 above).

Always find out:

a.       When the medications should be taken (with meals, first thing in morning, at bedtime, etc.

b.      How long medication should be taken (are refills necessary?)

c.       What are possible side effects and what should you do about them

d.      About which side effects should you notify the doctor?

e.       Does the medication interact with other meds, either prescription or nonprescription?

f.        Should the person avoid certain foods? (protein, grapefruit, cranberries)

g.       Do any of the medications have long-term effects?

h.       Does the medication have warnings regarding children, older people, or people with substance abuse?

i.         Does medication come in various forms? (i.e., trouble swallowing pills vs. liquid meds, etc.)

j.        Can you get the medication without a child-proof cap? (for those with arthritis or neurological disorders) or in large print

Be your loved one’s advocate. Do your research and ask questions!

9. Records/Journals: Find out what kinds of records you should be keeping, including notes on bowel and bladder function, sleep, presence of pain or any other identifiers. Records help the caregiver relay information to the doctor when necessary.  Don’t rely on your memory to help you with this—always write it down. (This can go in the Essay Book along with all other notes).

10. Resources: Ask the doctor for local resources that may assist you and your loved one, including information about medical supplies, medical equipment, home-health agencies and caregiver support classes or groups.

11. Documents: Have the doctor help you prepare (or at least assist you to get started) on any paperwork regarding end-of-life care, including a will, durable power of attorney for health care and orders regarding resuscitation.  Do these BEFORE you need them so when the time comes you will not be dealing with this added stress and emotional task. (You may want to take care of these matters at another time so your loved one doesn’t have to be part of it. However, you don’t want to appear secretive, either.) Be sensitive.

12. Hospice:  If your loved one has a terminal or incurable illness, get a list of services and support for your loved one’s final days/hours. Many of these services are available at no cost to patients with a life expectancy of six months or less who opt for palliative rather than curative therapies. I've had experience with Vitas and I can recommend them for all kinds of end of life care (www.vitas.com).

13. Follow-Up: Talk to the doctor frequently, either at your scheduled visits or in between when questions come up. Don’t feel guilty for contacting the doctor—that’s what he/she is there for. When you’ve left a message for the health care professional and they haven’t gotten back to you within a reasonable time, call again.

Organization is key to caregiving. You must keep good records not only so you have a paper trail, but in order to find the information you need in a timely manner.

Please see the listing at right for Medication Chart to help you keep your loved one's medications organized.