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  • 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.

  • 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.

  • 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.

  • 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 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.

  • 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.

  • 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.

  • 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

  • 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.

  • 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.

  • 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.

  • 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 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.

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.

  • Patients and family members can find information on caregiving at Cancer.Net.

  • ASCO's website for patients and families.

  • We provide on cancer.net 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 family caregivers to

  • be better prepared, better equipped and feel more supported for this very, very important role that they're playing.

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A2 初級

家族介護入門 (Introduction to Family Caregiving)

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    clara.english.0001 に公開 2021 年 01 月 14 日
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