Introduction to Family Caregiving

Last Updated: July 3, 2018

This patient education video offers an introduction to family caregiving, with practical advice for coping with this unique role. It is led by Dr. Jyoti D. Patel, patient advocates Marc Heyison and Carole Seigel, and Dr. Lidia Schapira.

More Information

Caring for a Loved One

ASCO Answers Guide to Caregiving [PDF]

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Cancer.Net®: Doctor-Approved Patient Information from ASCO®

Introduction to Family Caregiving

What is Caregiving?

Dr. Jyoti D. Patel: Caregiving is support of any patient through their cancer journey. It can be a family member, it can be a friend, it can be someone that you live with, it can be someone who lives far away.  But someone who acts as a support system for a patient with cancer.  And that support system can be anything from going to visits to the doctor, supporting patients through chemotherapy. It can be someone who maybe lives far away and arranges for transport for patients.

It may be someone who’s helping you with finances. So it’s a huge definition that really encompasses sort of all that you are as a patient, right, it can be the most immediate needs to sort of the most existential ones, the things that make you you. 

Marc Heyison:  I can focus on what my experience is from my perch as the founder of Men Against Breast Cancer.  When we have our workshops, I’m dealing primarily with a male caregiver, and, in most cases, it’s a husband, but it’s also a significant other, a boyfriend. 

In my case, my mom’s a 23-year survivor, and my brother and I were there for her, as was my dad.  So I can come at it as a male caregiver who was there in the here and now. 

And that primary role, again, is to figure out what I need to do so she knows that I’m going to be there with her every step of the way, and that’s what matters.  You’re partner’s in survival.

Carole Seigel: Well, I believe that caregiving is working together to support not only the patient but to support each other in this very stressful time. My husband was 58 years old when he was diagnosed with pancreatic cancer. He lived for 27 months, we had young adult children, three adult children, and during that time the four of us worked together as I say to support each other, which was also support for Mike.

Lidia Schapira, MD, FASCO: Ideally caregiving should be a team effort.  And there should be more than one caregiver.  So, that for instance even if there is a primary caregiver there are others, relatives, friends, neighbors who can give them a break.  The best way to do that is offer some very concrete help or assistance.

For instance say I can come over from 5-8 on Thursday afternoons why don’t you take that time off.  Or I can go and pick up the kids on Monday or Tuesday afternoons and give you a break from that.  So, to be very specific in the offer of what it is that you can bring, and give that family caregiver some physical time to be away, to take a break or perhaps to just think about what he or she needs.

The Caregiver/ Patient Relationship

Dr. Patel: The relationship between a patient and caregiver is one that is based on love and caring, but is one that’s certainly dynamic over time, things change.  You have good days and bad days. There may be days when you feel like talking a lot and other days that you don’t. And it’s just nice to have someone there listening quietly.

Probably the best tip I can give to patients and their caregivers is to be honest, to be respectful, to give each other a little bit of space. It’s important that you both have some privacy in what is a very close relationship.  And understanding that roles change.  So it may be that the patient has been the mother and has been someone who is taking care of everyone around her and then suddenly she’s ill and the caregiver stepped into that role.  So understanding what that means to the patient that you’re helping, understanding what it means to the caregiver to do that and to sort of change the relationship.

Marc Heyison:  You have to determine what works best for your relationship.  You know that rhythm better than anybody else.

And that’s where I get into people can’t tell you what to do, because, again, what worked for them is not necessarily going to work for you, and you’ve got to have a filter take in those suggestions, but it has to be applied to your situation.

Communicating with Friends and Family

Carole Seigel: I think that caregiving can be practical, it can be emotional, it can be spiritual, long distance people. I had a group that I would send out bulletins about how Mike was doing, email bulletins.  I called it my Jungle Drum.  And I would give them exactly what was happening to Mike. And so then I could open up the computer and there would always be of course nice positive well-wishing comments from friends and family. And that was something that when Mike was in the mood I could read to him.  And it was very supportive. 

Dr. Patel:  I usually tell patients to appoint a point person and that point person is usually the caregiver or it might be someone that the caregiver appoints as the contact for friends and family.  That person can often send emails, can give updates on conditions.  I think it’s also important that they also organize all of the goodwill the most patients feel so there are neighbors and friends that often want to do something to help patients but feel uncomfortable doing it. 

It usually just requires a little bit of organization. And that person, that point person can communicate on web based applications

Caregiver’s Role with the Health Care Team

Dr. Patel:  So, it’s important that caregivers identify themselves early on to the health care team.  Certainly once that has been formally done in a HIPAA compliant way caregivers can be the most proactive ones calling about appointments or side effects if patients don’t feel well. I’d encourage consistent early communication with health care teams so patients, caregivers and health care providers understand each other’s style. I think that’s important, and again develop that relationship over time. 

Sometimes patients of mine will have their caregivers on the phone during our interviews, so we’ll do a speaker phone that they can call in, particularly if they’re working or live in a different city.

Marc Heyison: And if part of your role as the caregiver is to go to the doctor with them, it’s not just getting in the car and driving them to the doctor, it’s making sure you’re able to take notes and write down answers to the questions, making sure you take the appropriate reports, so you have to put it in your notebook, so when you go to the next doctor.  All these things play a critical role.

Carole Seigel: I was one of these people that had a big notebook, when we’d go into see the doctor I had all these things.  And one time I turned to Mike and I said does this embarrass you or does this fatigue you, does it annoy you?  And he looked at me and he said no, it gives me courage. And I thought he had so much courage, but if I could help that a little bit it was huge in my mind.

The other thing I did is I brought a tape recorder and would tape the sessions.  And sometimes it wasn’t necessary, it just wasn’t necessary, but other times I actually transcribed them.  And that was because when I think with any serious illness I certainly can speak for cancer, if a doctor is telling you something you can be concentrating so hard and then all of a sudden your brain goes right out the window.  

Dr. Schapira: Caregiving and illness can also have a huge financial toll on families. 

So, I think we need to be very realistic also, about what we’re asking patients and families to do is more and more of the care of seriously ill patient is not (now?) taking place in the community and in the home.  I think as a society we need to think about, how we’re going to support family caregivers, most of whom provide large number of hours. 

Caregivers Taking Care of Themselves

Dr. Patel: When someone you know is going through a cancer journey it can be devastating and often there will be times in caregiving that are more stressful than others, patients may be having a lot of symptoms or may be going through tough treatment and as a caregiver it can often seem all consuming; you are worried, you hate to see the person you love suffer, you’re trying to stay on top of all the medical questions, all the financial concerns and it suddenly seems like the process is 30 hours of care within a 24 your day in which you’re not sleeping, eating or taking care of yourself. 

Dr. Schapira: Family caregivers need to feel that they have permission to take care of themselves and that it is actually fine to take a little time to do those sorts of things that help them feel at ease, help them feel well, maybe it’s doing yoga, maybe it’s going for a run, or maybe it’s actually talking to somebody, seeking some help and some mental health help.

Dr. Patel: Often the journey of cancer is not just one or two months it can be years and that constant stress building up over time without adequate attention to yourself and to your own wellbeing can result in devastating consequences.

Carole Seigel: We also helped each other I think. My kids particularly helped me.  They would see to it that I could go out and take a walk. They would see to it that I could, I was working on a very part time basis, but they were always right there saying go, it’s okay.  It’s fine. And that was restorative to me.

Marc Heyison:  if you can’t be there for yourself, you can’t be there for the person you love.

And what a lot of people don’t really focus on, if you’re helping the caregiver, you’re helping the patient, because if the patient knows that her caregiver or his caregiver is going to be there for them every step of the way, they can focus on their treatment, and their quality of -- their -- and their quality of survivorship will increase because they can focus on their treatment.

Where to Get More Information

Dr. Schapira: Patients and family members can find information on caregiving at  ASCO’s website for patients and families.  We provide on a lot of information on coping, coping with difficult situations with stress and I think that you will find very helpful ideas and tools and perhaps ways of connecting with resources in communities that will help [music] family caregivers to be better prepared, better equipped and feel more supported for this very, very important role that they’re playing.

[Closing and Credits]

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