Caregiver to Caregiver

 An important aspect included in the job description of caregivers is advocate. 

Advocate – a person who pleads on someone else’s behalf.

Synonyms for this word are helpful in revealing what it means to be an advocate: champion, upholder, supporter, protector, spokesperson for. Booster and plugger are less formal but provide insight. Critic was the only antonym listed in the thesaurus that I consulted. That pithy word says a lot about what a caregiver should not be.

Following are some areas in which your advocacy will enhance your recipient’s quality of life.

Navigating doctor visits:  Even if they do not yet require a full-time caregiver, many seniors could benefit from having someone accompany them to doctor or other medical (labs, tests, procedures) appointments. These days, the registration process alone can tax a person’s nerves, with all the questions asked and forms to sign. When this is done electronically, it may be even more difficult for someone who is not tech-savvy. Knowing your caregiver will be by your side to assist and answer questions provides comfort and reduces anxiety. 

Those who require caregivers often have a full schedule of health care visits that may include more than one doctor or location. Here are some guidelines to consider when scheduling and keeping appointments:

• Schedule at the time of day that fits your loved one best. I always schedule early in the morning (even though I am not generally a morning person), because the wait time is usually less. If the office is closed for lunch, the first appointment afterwards is also a good time. Chances are you will wait longer just before lunch or at the end of office hours for the day. If the visit includes fasting-labs, the earlier in the morning, the better.
• Arrive a few minutes early so you and your recipient can relax before being “called back.” The current procedure at many medical facilities can be a bit complex. The office clerk schedules an appointment at “two o’clock” and in the same breath instructs you to arrive “fifteen minutes early.” I understand that they are allowing time for preliminaries before the doctor actually sees you, but this can be confusing. My solution is to write the time I am expected to arrive – fifteen minutes before the stated appointment time – on my schedule.
• It is probably best not to schedule more than one appointment on the same day, especially if your loved one tires easily. An exception would be if you must travel a long distance. Scheduling both a morning and afternoon appointment with a break for lunch in between would be an option.
• Consider what clothing will be most appropriate to wear, especially if some or most of it will have to be removed before an examination. Choose ease and comfort (and of course, clean and not tattered.) 
• If your loved one needs help getting in and out of the car or walking, ask another family member or friend to accompany you. I cannot tell you how many times I have assisted an elderly person trying to open the car door while the caregiver sits behind the wheel in the patient pick-up area. I certainly do not mind, but by-standers willing to offer a helping hand are not always available. This is not just for convenience but safety as well.
• Prepare for the visit by keeping a diary of information the doctor has requested, such as daily blood-pressure readings or weights. Changes in behavior – both physical and mental – should also be noted, such as:  “Mother has started being afraid to go to bed at night” or “Dad balks at taking his potassium.” The more thorough picture you can present, the better problems can be addressed.
• Do write down any questions or concerns you have for the doctor. Sometimes those 15-minute examinations come and go so quickly, if you do not have them in writing, you may get side-tracked or forget.
• As the doctor responds, take notes. Ask for clarification if you do not comprehend (and do not be embarrassed to do so). I realize doctors can be intimidating, but as a nurse who has worked with numerous health care providers, I believe they want you to make sense of what they are saying but sometimes talk over your head. There’s no shame in saying, “I do not understand; could you please elucidate?” Yeah, it’s okay to use a flashy word.
• When a test, treatment or surgical procedure is recommended, find out the benefits, the possible side effects, and available alternatives. 
• More than ever before, the price of healthcare is high and confusing. Feel free to ask about the cost of medications, tests, and procedures and whether or not they are covered by insurance. My experience has been that medical personnel generally do not discuss this with patients. In most cases, they may have no idea and will refer you to your insurance company. A doctor once prescribed a tube of ointment for a rash on my arm. When I arrived at the pharmacy to pick it up, I was told my co-pay would be over one hundred dollars! After explaining to the pharmacist that I did not care to pay that much, he directed me to an over-the-counter cream that cost less than ten dollars. The rash disappeared in a few days. This taught me the importance of responding “yes” when asked, “Is there anything you would like to discuss with the pharmacist?” Often, they know more about medications than the doctor prescribing them. 

Knowing the diagnosis: It is important for a caregiver to be aware of any medical diagnosis that has been made. When a new ailment is identified, inquire of the doctor, “Tell me more about this…” Precisely, learn symptoms (so you can gauge if they improve or worsen), side effects, usual treatments and possible outcomes.  Doing your own personal research can give you a general overview of the disease or condition – but may also present you with many unanswered questions.

Preparing for the future: No one likes to talk about this (well, almost no one) but it is inevitable that end-of-life care will eventually be needed. Do not wait too long to make those decisions in writing. Several forms are available, and your primary care physician can direct you. 

Expressing your concerns: As an advocate, it is important to be willing to speak up. When a health care worker asks your opinion about the care your loved one has received, be kind but honest. If wrongs are not reported, remedies will not be made. Respond frankly to surveys you receive in the mail from clinics or hospitals following treatment. Health care facilities send these because they want to know about you experience so they can do better. If you think they are already doing a great job, let them know that as well.

Advocating for yourself: Remember, it is essential to care for yourself so you can continue to care for your loved one. This may mean reaching out to other family members to allow you to have respite time, bringing in paid assistants, or contacting and getting involved in agencies in your community that provide support for caregivers. Because, everyone can use an advocate.

Caring Quote:  As your care recipient’s advocate, be involved, don’t accept the status quo and don’t be afraid to voice your concerns. – Nancy L. Kriseman