Caregiving Across the Miles

Caregiving Across the Miles

Caregiving Across the Miles

A long-distance caregiver lives an hour or more away from someone who needs care. Your support could take many forms such as connecting by phone, texts, emails and virtual visits, doing research, navigating insurance or finances online, managing the household from afar, coordinating in home care or services, visiting to relieve a primary caregiver, keeping extended family and friends in the communication loop, or even helping with expenses. Even if you can’t be there in person, your role is important and there is much you can do for your loved one no matter where you live.

Whether you are a new caregiver or have been in this role for some time, these suggestions can make life a little easier for everyone:

    • Learn about your loved one’s specific cancer type (and/or other diseases), their medications and their treatments.
    • Ask your loved one and any other caregiver(s) what you can do to help.
    • Learn about your loved one’s specific cancer type (and/or other diseases), their medications and their treatments. This will help you to anticipate what to expect, enable you to communicate knowledgeably with your loved one, other caregivers, and the healthcare team, as well as assist in future decision making. Before hopping on to Dr. Google check out these tips on how to do research safely online and evaluate the credibility of the websites you source. The Resource Center on the Bag it website features a list of resources for every cancer type and any cancer topic.
    • Ask your loved one and any other caregiver(s) what you can do to help. Communicating long-distance, even with text and email, is not the same as being there and can be even more challenging. It’s important that conversations are frank and clear. Actively listen to their stated needs and preferences and follow up with questions to be sure you understand. Together, create a checklist of what needs to be done (click here for examples). Be flexible. Keep in mind that your loved one’s condition will change and adaptations will be necessary as time goes by.
    • Build a team of caregivers if it does not already exist. Take into account what everyone’s individual strengths, interests and limitations are when coordinating who will do what, from where and when. Your loved one should be a part of this important process, if possible.
    • Get organized. Bag It’s My Companion Guidebook is a perfect tool to keep everything in order and in one place. Use it to store medical info, health care and personal contacts, reports/scans/labs, calendar items, insurance info, notes and questions for the doctor, track side effects and symptoms, and much more. The handy forms can be filled in by hand or use the fillable PDF format to print, save and update later, and share electronically with others as you see fit. Find the forms here. Maintaining this information and all the paperwork on an ongoing basis will make this an easy go to reference for caregivers and doctor visits alike.
    • Offer to join your loved one’s doctor appointments virtually. The pandemic has greatly expanded the ability for health care systems to easily include caregivers by phone or video conferencing during in-person or virtual office visits.
    • Gather information about local resources where your loved one lives. Programs and services that assist with in-home care, meals, medical equipment and aides, transportation and other needs may be available to fill some gaps or ease caregiving responsibilities of a primary caregiver.
    • Being a long-distance caregiver brings its own unique challenges, stress and other emotions, particularly when for an extended period of time. Have your own support system in place and connect with people who understand what you are going through. This could be a caregiver support group, online community, a counselor or even a friend who has also been a caregiver.

More tips for Long-Distance Caregivers

    • Consider a medical alert system if there is not a caregiver in the home at all times.
    • New to caregiving? Consider attending caregiving training available through your local aging agency, AARP or other business in your local community or online. This specialized training can include helpful skills such as first aid, physical care and safety, assisting with activities of daily living, and other ways that you can be an effective caregiver in person or from afar.
    • As a caregiver you may be eligible to take unpaid leave from your job to care for a family member under the Family and Medical Leave Act (“FMLA”). Learn about your rights here and check with your employer regarding potential coverage and FMLA policies related to your job.
    • Check this list of apps available to help manage many aspects of caregiving.
    • Pack a travel bag in advance and prepare your own household in the event you need to leave quickly for a few days to attend your loved one.

Helpful Tips for When You Visit Your Loved One

    • Plan your visit to identify what you want to assess and what you hope to accomplish from a practical standpoint, but don’t forget to also set aside dedicated time to enjoy each other’s company.  Do things that are fun and relaxing that are not focused on caregiving or a “to do” list. (These hours could be the ideal time to give the primary caregiver a much-needed respite for a few hours or day or two if you can swing it.)
    • If possible, accompany your loved one to their in-person doctor appointment. Use the Bag It form My Appointment Summary Log form to note the appointment details and write down the questions to be asked (and answers received).
    • During the appointment, get your loved one’s permission to allow the healthcare team to share medical information with you and get the necessary paperwork signed along with a copy for yourself. Exchange your contact info with the health care team and discuss the best method for future communication together. 
    • Hold a meeting with your family/caregivers. You bring a fresh perspective and may observe things that a primary caregiver does not notice day-to-day. Continue to listen carefully and be aware that other caregivers are also under tremendous pressure so emotions can run high. If you offer suggestions for more help, be specific about the types of support you are proposing. For example, having a home health aide come in each week, hiring help with yard work or other household maintenance, having groceries or prepared meals delivered, or arranging for transportation for medical appointments.  
    • If not already completed, start the conversations with your loved one and the other appropriate people to have a healthcare power of attorney and a durable power of attorney completed in the event your loved one becomes unable to speak or make decisions for themselves. While these topics can be sensitive and more than one discussion may be needed, executing these documents ensures that your loved one’s wishes will be followed. Advance health care directives are also a tremendous help for the medical team and others potentially making decisions on your loved one’s behalf if needed in the future.
    • Take care of yourself during visits to your loved one. Get plenty of rest and set aside some time to recharge so you can be your best self with them. Remember you will not solve all the problems and have all the answers but your support, assistance and presence will no doubt mean a great deal to those you care about.


Additional Caregiving Resources: 

Caregiving from a distance

Eldercare locator: Find local caregiving and support resources in your community

ASCO Answers Caregiving booklet

Family Caregiver Alliance Handbook for Long-Distance Caregivers

American Cancer Society Cancer Caregiver Resource Guide



Caregiving checklists:

AARP Prepare to Care guide

Family Caregiver Alliance Handbook for Long-Distance Caregivers

State by State Advance Directives:



Raise your hand if you postponed or converted to telemedicine visits for “nonessential,” routine and/or preventive healthcare early in the Covid 19 pandemic. If yes, many of us did the same thing.

As stay-at-home restrictions lifted, many providers started seeing more patients in person while still offering a virtual option. But there can be confusion around which appointments we should now schedule to see the doctor in person. 

Simple blood tests, urine tests and direct exams can detect early cancers, diabetes, hypertension and many other illnesses. Some critical aspects of care, like a physical exam, can only be performed in the office. Another question is whether it is safe to schedule overdue or upcoming screening tests and other procedures – especially as the pandemic continues to rise in many communities. 

These are shared decisions between you and your healthcare provider. Keep in mind that your provider wants you to be in touch and wants you to get the medical care that you need. Call your doctor’s office to discuss your particular healthcare situation. Speak candidly about any concerns and questions you have, as well as making clear your needs and preferences. Together you can assess what’s best for you and make a game plan for your care.

If you’ll be scheduling an appointment for an in-person visit you will probably be asked if you are experiencing any Covid-related symptoms and if anyone in your home has tested positive for Covid-19. 

Healthcare providers receive guidelines from state, local, county health departments and the CDC about how to safely operate their facility while minimizing risk to patients and their staffs. Many providers have implemented scheduling, staffing and technology tools to complement the physical distancing procedures and environmental changes they have made. If you are not automatically provided with the pertinent detail when you schedule your appointment, click here for some questions to ask the scheduler about the practices in place. You can also check out the provider’s website for information posted there about steps they are taking. 



For more tips on how to safely navigate an in-person medical appointment, read below

  • If you are experiencing Covid-related symptoms the day of your in-person appointment, call the provider’s office for guidance before you go in.
  • When you arrive to the facility, you will likely find new procedures and safety precautions put in place since your last visit. Follow the requested instructions and communicate with the staff if you observe something or are asked to do something that makes you feel uncomfortable.
  • Wear a mask or face covering throughout your visit unless you need to remove it for a procedure or are requested to do so by your provider.
  • Wash your hands with soap and water for at least 20 seconds or use hand sanitizer with 60% alcohol before and after touching any surfaces in waiting areas, exam rooms, and other common areas. Avoid touching surfaces as much as possible.
  • Avoid touching your face, including your eyes, nose and mouth.
  • Cover your cough or sneeze with a tissue or your elbow, and throw away the tissue. When wearing a mask, cough or sneeze into the mask.
  • Follow social distancing recommendations as much as possible.
How to Create a Family Health History

How to Create a Family Health History

Information to collect:

  • Write down the names of relatives on both sides of the family (ideally three generations): parents, children, grandchildren, siblings, grandparents, aunts/uncles, nieces/nephews, cousins. (Accessing a family tree may be helpful)
  • Add for each person any information you have about their:
    • sex at birth
    • date of birth
    • ethnicity
    • known medical and mental health conditions and age of diagnosis
    • any other details about lifestyle, habits, environmental factors, results of any genetic testing.
      (If a family member is deceased, note age at time of death, any known medical/mental health conditions, and cause of death)

Start the conversation!

  • Identify the family members on each side (mother’s and father’s side) who might be most knowledgeable about your family members.
  • Let them know the reason you would like to ask them some questions and the kinds of information you are seeking. Give them some time to think about it or to collect info if needed.
  • Share any information you have gathered so far and then ask them to add more details where possible.
  • Some family members may be uncomfortable discussing these matters. Respect the privacy of your relatives as confidential information is shared. Let them know that having this information gathered will benefit ALL family members.
  • The information can be gathered in person, by phone, or in writing – whatever is most comfortable and most convenient. In cases where information is incomplete, just include what is accurately known. Do not guess.
  • Sometimes medical records and family documents like scrapbooks can fill in some blanks, as can public records.

What to do with the information you’ve collected:

  • Create a written document (or see below for online options) with the collected family history information gathered.
  • Share copies with other family members for them to share with their own doctors to inform them of their family health history.
  • Give a copy of the Family Health History to your doctor for their records and review it with them. The document can help your doctor look for early warning signs of disease and recommend steps for reducing your personal risk of disease.
  • Questions to ask your doctor about review of your Family Health History:
    • Does my family history put me at risk for certain conditions or diseases? Other members of my family?
    • Are there any screening tests I should have now or in the future?
    • Should I have genetic counseling or genetic testing?
    • What lifestyle recommendations do you have to reduce my risk?
    • What information should I share with other family members?
  • Be sure to update the records over time and provided updated copies to family members. This can be a valuable document for future generations as well.
Free online tools to help collect your family health history and share it with relatives and doctors.
Show yourself some love this month!

Show yourself some love this month!


 Healthy Lifestyle

  • Maintain your ideal weight
  • Physical activity
    • Walk, jog, dance, bike, swim – or whatever you like to do
    • Get up and move every hour
  • Diet
    • Eat lots of fresh vegetable and fruits of every color, whole grains, beans
    • Avoid sugar, processed meats, junk foods
    • Limit/eliminate alcohol intake
  • Do not smoke or use tobacco products
  • Avoid risky behaviors


  • Have regular check-ups with your primary care physician
  • Maintain good overall health to avoid viruses and chronic infections that increase your cancer risk
  • Get cancer screenings and cancer vaccines recommended by your doctor

Harmful Exposures

  • Protect your skin from the UV rays from the sun. Use sunscreen and don’t use tanning booths
  • Steer clear of secondhand smoke and other environmental carcinogens

Want to know more? Check out these sites:

National Cancer Institute Prevent Cancer American Institute Cancer Research