Caregiver Connections
Helpful tips for family caregivers

Communicating long distance

When you are managing a family member’s care from afar, you need to stay in touch on a variety of fronts.

Connecting with your loved one.

• Communicating by phone is a basic need. To simplify your relative’s ability to call out, there are special cell phones for persons with memory loss. They have only three to five buttons and autodial priority numbers of your choosing.
• Skype, Facetime, and Google Chat are free online services and apps that allow you to see each other as you talk. They require a computer or smartphone. There are also special touchscreen computers that can provide one-touch video calls.
• Email-to-fax. Your relative can handwrite a note to you and fax it to your email address. You reply by email and he or she gets it as a fax.
• Snail mail is underrated! Especially if your relative has memory loss, periodic postcards are a quick, tangible reminder that you are thinking of him or her.
• If there is memory impairment, use the phone for comfort and joy, not for important conversations. Those should happen face to face.

Coordinating care.

• Use conference calls for family/professional meetings. If you don’t have this option with your phone, sign up for a free account at freeconferencecall.com.
• Attend medical appointments via speakerphone. Even if your loved one lives 1,000 miles away, you can attend the doctor’s visit, ask questions, and hear what the doctor says directly. Simply have your loved one bring a cell phone to the visit and call you when he or she gets in the exam room.
• Investigate “Cloud” options. Many care providers allow patients and families to access medical records and email securely online. For care coordination among family and friends, consider free tools such as Lotsa Helping Hands, CareZone, or Caring Bridge. (Research privacy policies to be sure they meet your standards.)

Deciding about cancer treatment

What is best for your relative depends on many factors. Some are medical. But some are personal. These relate to your loved one’s phase of life and what he or she feels makes life worth living. Following are the key questions to explore:

What kinds of treatments are possible? For each option, you will want to know:

• What does the treatment entail?
• Where is it given? How often? And for how long?
• How and when will you know if it is effective?

What kinds of side effects might occur? Some treatments have immediate and debilitating side effects, such as nausea or fatigue. Some may have long-lasting effects, such as bone or muscle weakness. Surgery that removes a body part may necessitate an artificial replacement. Also ask:

• What can be done to help reduce side effects?
• How long will the side effects last?
• How much help will your relative need during treatment?
• Can he or she be left home alone?

What are the risks and benefits of each treatment option? Certainly you will want to know the prognosis, often expressed as the percentage of patients who are still alive five years after treatment. Other questions include:

• Will the treatment “cure” the disease?
• What is the likelihood the cancer will return?
• How long might your relative live if no treatment is given?
• Will treatment provide additional years of life? Months? Weeks?
• What kind of quality of life can be expected following treatment?
• How does this compare with the quality of life if your relative declines treatment?
• Is the treatment covered by your insurance?

Treatment is a very personal decision. There is no right or wrong choice. Discuss the pros and cons of each option with the doctor. You might even want to ask for a palliative care consult to learn more about quality-of-life issues and the effectiveness of treatment.

Review medications before leaving the hospital

An alarmingly high number of patients end up being readmitted to the hospital because of confusion about the medication instructions they received at discharge. Research indicates one source of problems is an inaccurate list of drugs when he or she entered the hospital.

As a family caregiver, you can make a big difference for your loved one!

Create an updated medications list that has

• the name of each drug
• the dosage (how strong it is: 10 mg, 100 mg …)
• how often it is taken, and when
• the route of administration (by mouth, patch on the thigh, injected)

Include nonprescription (over-the-counter) drugs, too. Vitamins, laxatives, sleep aids, and pain relievers should be identified in case there is a conflict with a new medication.

Keep the medications list UP TO DATE. “Up to date” means that you refresh the list EVERY time there’s a change! It might be a simple adjustment in dosage. But acting promptly means you’ll have the right information when you need it in an emergency. Mark the date of the update at the top of the list. Keep a copy of the most current list in your purse or on your phone. Ensure your loved one also has a copy.

If a hospitalization occurs, make yourself known. Identify yourself as the person who manages your relative’s medications. Give them your list! 

Upon admission. Review your medications list with the hospitalist or nurse in charge. Make sure they know about all pills, ointments, patches, and over-the-counter preparations.

At discharge. Reconcile your medications lists. Compare the discharge list with your most recent home list and ask about every discrepancy. Get information about new medications. Ask about doses and when each drug should be taken, with food or without, etc. Ask about medicines that have been dropped. Also ask about resuming over-the-counter preparations.