Cancer Services of Northeast Indiana.

Walking side by side with families on their cancer journey, providing emotional support and practical assistance... for yourself or another.

Cancer-Services.org.

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>> Good evening and welcome to PBS for weighing in to our show here.

>> It's called LIFE Ahead.

I'm the host of the show but the star is the guest that's coming up here that I'll be introducing in just a moment.

>> Let me tell you a little bit about life here.

If you've not watched us before, you should be it's every Wednesday night at seven thirty and each week we have a different topic and different gifts and the intent is to try to give you education and information that will help you in choices you have to make in your LIFE Ahead.

>> The title of the show and tonight I'm really excited about our topic.

Last night I watched a special documentary a two hour documentary on PBS and we're going to follow up with a discussion about that documentary with cancer services of Northeast Indiana and with me tonight I'd like for you to be Marcia Haffner.

>> Thank you for coming with us tonight.

Thank you for having us.

And we're going to be talking about caregivers.

Some of you watching might be a caregiver for a family member or perhaps you're doing that as a profession and we're going to talk about what the life is like for a caregiver and some important things you need to do for yourself and what you can do if it's something you would be interested in volunteering or working for .

>> OK, Mark a big topic then we have to do tonight.

>> Talk to me a little bit about the cancer services and how caregivers fit into that and how this is of northeast Indiana.

>> Correct and oh Martius time by the way, kind of an important one.

She's the vice president of Mission and Mission Fulfillment.

So let's talk about the mission first.

>> Sure.

Yeah.

So Cancer Services is committed to helping improve the quality of life for people with cancer and their families through mostly compassionate practical assistance and also through wellness care.

So whatever we do for a person with cancer we'll also walk with their family members through that.

>> Yeah.

OK, do you have an actual building or facility?

We do.

We are located on mutual drive on the north end of town near Brotherhood Park o Brotherhood.

OK yeah you have to come with what's it called mutual drive mutual.

>> I've heard that one but you know we're brotherhood you can see that reminds you can you can you can kind of see our building when you go by there I will purposely look for .

We also did open a site in Warsaw.

Oh yeah.

So we covered the 11 counties of northeast Indiana and kind of decided to go a little bit towards the our outer limits so that we're closer and anyway are you closer to Legrange?

>> You know all of the county, everything that's up north.

OK, And this is a not for profit.

>> So what you're doing for people is is for people getting the services is a volunteer service.

>> It's a it's a professional service.

There's a full staff there that provides services.

We do have volunteers who help with some different ways for people including like transportation to treatment, those kinds of things that are volunteer roles.

But most of our services are delivered through our paid staff.

>> You know, because you were talking about servicing people with cancer in all ways, whether it's daily things at their home maybe going to somebody's house and doing whatever they're fixing meals or cleaning or giving commands, meds or services, you can help them arrange that.

We can help with their referrals if those are the things that they need will help them find those services in the community.

We don't provide those services ourselves but we have advocates on staff who are kind of well versed in what all the resources are.

Yeah.

That are available to folks and they'll help them access those you are going to hear that, Marsha, because when things happen to a family it's often by surprise and you may not know what to do or where to even start.

And I've had this happen in my own family or extended family where somebody come out of a major surgery and they're going to be incapacitated for a number of months and it's like where do you go?

Who do you call to get some help and some services you mentioned as we were talking earlier, Council of Aging and Aging is a good referral center.

>> Yes, we're in northeast Indiana that covers most of that is aging in-home services.

Yes.

Yep.

They are they do a lot of support for caregivers specifically as well as as the person that they're caring for and we'll arrange a lot of services with those folks.

>> Right, right.

So again, you're going to be are you going to meet with the family of the cancer patient or will we work with anybody who's involved in the situation really so anybody providing support to the person with cancer, the person with cancer themselves that we provide support to and then all many, many of our services are intended for the family as well .

So will we work with kids whose parents have cancer?

We work with kids who have cancer.

We work with caregivers, spouses.

They can access our support of counseling or mental health counseling or relaxation massage our wellness care.

>> Wow.

We have a son we have a caregiver support group.

>> We have journalling groups for caregivers, lots of different things they can come to yoga or tai chi.

>> Oh my goodness.

It makes me want to start joining up here and I do want to remind you all about that documentary again that's on PBS and it will be available throughout the summer on Passport PBS on Passport and it's just called caregiving.

It is definitely worth watching and again it's two hours but goes really fast I would say in watching this show and Cathy Edwards who who's here at PBS told me about it last week so that I would watch last night and she said Get your Kleenexes ready because there are parts of it that are really tearjerking and really get into your heart when there are stories about caregivers in some of the work that they're doing with a patient, often a family member and it's very moving but it's very telling to yes.

>> Yes.

It's a difficult role.

>> They they're really stepping up to a plate here.

You talked about your getting massages and all kinds of things which leads me to talking about taking care of the caregiver.

>> Let's speak to that Marcia.

Yeah.

Why is that important right.

>> Well, you we're all familiar with that puts your oxygen on first metaphore.

>> Yeah.

So it's very much like that.

Right.

You have to have the resources before you can really rise to the occasion.

Yeah right.

It's a challenge to to be there for somebody like that and so you have to make sure that you've got gas in your tank right room.

>> I was surprised well maybe a little surprised through some of the stories how being a caregiver and again depending on the patient and what their needs are or how severe their situation is, it can be not only emotionally challenging but time taking a lot of time taking a lot of heart and compassion which you know brings to even into mental issues if it's a family member especially and physical, you have to be pretty strong to take care a lot of things.

And there was one story I was particularly interested in Marcia in the documentary followed a number of different people but there was one young woman whose father had cancer and she came back home to her house if I recall I think he was in hospice for a while and then they said no, they declined him being in hospice so she took care of him at home and even her husband was helping as a caregiver.

>> But she said that each morning she would get up and start her routine as a caregiver and you watched her go through these things.

>> She bathed game and and we did exercises and she dressed him and did all of those physical needs and she said then we lifted him and they had some kind of equipment to lift him from the bed into like a lazy boy or some kind of recliner and she said Then I could sit down next to him and I can move from being a caregiver to a daughter.

>> Yeah, because there's a definite distinction between the two and she said if I put my daughter hat on while I'm doing the physical things with him, I get too emotional.

>> It's too emotional and that that change in roles is so significant.

Right.

You want to have some continuity with your life as you knew it.

Sure.

And so being able to step back into that daughter role and maintaining your identity as a daughter is just really important and as a father and not just be a caregiver so that being able to provide the care and switch back into a personal role and not the the paraprofessional.

>> Do you have any recommendations how people might do that if they're caregivers at home that aren't yet involved with your organization?

Yes, sure.

They I mean the the idea of maintaining that relationship as the priority yeah.

It often requires folks to have some just good habits.

Right.

And so she was talking about her routine and how she could through that routine she was mindful of of which role she was in at any given time and so keeping that mindfulness about which role you're in right now and what it means to have a personal relationship with your dad in this case.

>> Right.

I loved one of her comments.

She said she was doing total caregiving.

I mean she would you know, with the morning routine she even combed his hair and she did everything she could to make him feel good physically and about himself and you could see that his level of confidence would rise.

>> And she mentioned that while she loved her dad before being a caregiver for him, she grew to love him even more.

>> Yeah, yes.

And I believe that was the same person in the documentary that talked about that giving care and receiving care is healing in itself is healing and receiving care is healing for both for both people.

>> Yeah.

What do you think that is that caregivers also get a benefit?

>> It's not just a you know, a routine or you do it because you have to.

>> But why do you think that caregivers are benefiting especially with family members like that?

You know, any time that we can give or receive love really that's a very loving action.

Right.

Really loving activity.

It helps us be whole.

I mean that's who we are as people, right?

We're in relationship and so whenever we can express that relationship it's just going to be healing.

>> Yeah, And that's kind of a beautiful thing.

>> Now let's say people that are watching us tonight here on PBS and people that watch the documentary decide that hey, that might be something that I would like to do.

You know, I don't have a family member gets sick but I would love to be a caregiver for others.

>> How can they get involved?

Marsha, what's the first step?

Mm hmm.

Well, I guess that depends on to what degree they want to do that.

Right.

So they can volunteer at an organization.

Yeah.

To do different things that might be very time limited and very you know, very specific if they really wanted to get involved with caregiving on a professional level.

There's lots of home health care organizations that they could go to work for but if they really wanted to do that as a support person they could I would say hook up with a nonprofit organization that might be able to have a role for them.

Yeah, OK. And again, I do want to mention advanced cancer services of northeast Indiana and or you could call again what is it?

>> Council of Aged and Aging Care Home Service.

>> Make some references for you.

We do have a call coming in from Julie.

Julie, thank you so much for watching us here on PBS .

And Julie says yes, I'm going to read your her question to you what are some simple ways caregivers can take care of themselves on a day to day basis?

>> OK, so we get to take care of ourselves if we're a caregiver, what are some ways we can do that so first of all, I would say that caregiving isn't is not a time to be alone.

Right?

Caregiving is a time to include other people.

So any ways that you can find time to spend with people that are supportive of you is very valuable on a day to day basis to kind of refresh that well but also to help there's most of our support system wants to be involved in in whatever way they can to support us but they don't necessarily know what that is.

So being able to talk to and know who you can turn to but have a very specific ask for them you could we go out and get some ice cream?

Would you be able to cut my lawn for me whatever those kinds of things are, we want to help most of the time but we don't necessarily know the best way or what their needs are.

>> Right, exactly.

And again, very important as you mentioned to have communication with the family and with that person who's ill if they're able to tell you what their needs are or what feels good or enriches their situation.

>> So you want to be I think as a caregiver you want to be mindful of mind, body, spirit, my spirit take care of all the care of all three.

Take care of your mind.

Take care of your body.

Take care of your spirit and find the activities that can support that.

I listed a lot of them at cancer services if you're involved with if you're caregivers for someone with cancer, that's a great spot and and you know your your engagement with people is going to kind of support all of those things right.

So sure you're coming to things where you have physical activity with other people is is a great opportunity.

>> You know, one of the things Mercier's I was watching the film last night that I was going to say surprised me but I don't know maybe it really didn't with how many young people are affected and I believe the statistic was something like there are six million children.

>> Yeah, ten and under that have to become a caregiver for somebody in the family.

>> You know, maybe they're the only one at home and their their mom has cancer and so they're fixing food.

>> They're taking care of her.

Yeah.

Yeah.

And sometimes that becomes part of their identity too.

Right.

And that's how and that's how families are right.

There's a give and take in families.

This is just a different kind of give and take.

It's happening where they have to step up in a different way.

You know the the young man in the in the film got me he was a beautiful kid, wasn't in the way that he the way that he interacted with his mom was just kind of precious buddy.

You know, it was he also was able to engage with her just as his mom, you know, climb into the bed with her and into have a conversation about what his day at school was like.

>> Right.

It was beautiful and that was after she kind of started getting dinner but then got exhausted and had to tell dad her husband and the young man, you know, I'm going to bed now.

And so she went back to bed and then and the son I don't know I don't know maybe junior high or something like that he just climbed in bed with her.

>> He stroked her arm.

She had a move with ARM because it was kind of stuck under a pillow and he just did it so lovingly and then he just laid there face to face and she asked him what did you do at school today?

>> And yeah, that was really beautiful interaction.

>> And then he said that was his norm.

Yes.

He didn't think it was unusual at all.

>> That was the way life was for him, you know, and I really appreciated for her for them to how they didn't just focus or center or talk about her disability or what was happening for her that they talked about the things of normal life .

Yeah, right.

They got to and which is so important in those relationships that it isn't all about the deficit that's happening there.

But you can talk about the things that are the joys in your life or just your normal day to day interactions out there that a mother and son would talk about wonderful and wonderful.

>> One of the things I would be interested in was your impressions about feelings that a caregiver might go through again in addition to maybe being physically tired.

>> But you know, we've gotten recommendations on how you deal with that.

>> But what about emotions?

Maybe maybe people feel guilt because they feel like imposed upon by the person that they have to take care of or that it eats into time that they want to have with their own immediate family.

>> How do you deal with those kind of feelings?

Sure.

First of all, I would say that that range of feelings is pretty broad and that probably all of them are normal and typical.

So you're not you're not standing out on your own if you're going through those things that's really a normal thing to feel either some guilt for self care.

A lot of people the caller Julie had called in earlier and said what can I do on a day to day basis?

And part of that is allowing yourself right to do that with and even if there's a sense of a little bit of guilt that goes with that that's normal.

You kind of know you move through that I would suggest having some good even little thoughts or sayings that you have for yourself to move through those kinds of guilt feelings.

Right of you know, my loved one would want me to take care of myself.

That's true.

But you know, those kinds of things that I I am proud of myself for stepping up and taking care of this right.

And so having some having some ways to affirm yourself when you're feeling guilty about either the way that you feel or the or the fact that you might be stepping away to take care of yourself.

You mentioned something that was similar to I'm going to say resentment.

Right.

Resentment.

Yeah, a little bit of that which is not uncommon either but you know, something creeped into your life and changed it, right.

Does it?

Yeah.

I mean one person said can you know, throw things off for six seven people or whatever the time is especially the immediate family and it changes your relationships and it changes you know and I think it's important as a caregiver to recognize that the situation stinks.

Yeah.

But not to resent the person you can resent what happened.

You can resent the situation but try to the ability to separate out resenting the person that you're caring for versus the situation that brought you here I think is helpful for good.

>> That's good because if you started feeling resentment toward that person that you're taking care of then you have to think in separating like you say that mom didn't choose to have cancer.

>> It's not her fault.

Right.

You know, and she you know, I'm separating Mom from the medical diagnosis and don't be mad at her.

>> Right.

Let's say we could be mad at the doctor or right or anything else.

>> Yeah.

Any kind of situational thing.

Right.

That that popped up around that it's all there.

I think people often have such a strong sense of loss in these situations to either the loss of what they thought the future was going to look like or the loss of kind of their own identity sometimes you know, I'm now since I'm a caregiver maybe I'm not a soccer player anymore.

Maybe I'm not you know, so those roles or that identity can be a loss that's in there too and just a loss of the kind of future that you thought you might have.

So one of the ways we deal with loss is to find hope, right.

To find hope and we don't want to have the kind of wishful thinking sort of hope right.

Like you being like this is going to go away.

We're going to wake up at didn't really happen or all of these things or yeah, it's going to go on away on its own.

Those are those things are wishful thinking.

Right.

But something to really rest your hope on might be something like my family is going to stay strong through this or get stronger through this or the hope that you know, when this is all said and done, you know, I'm I'm going to have I'm going to have the peace knowing that I did everything I could right.

>> There would be nothing worse than yeah.

You know, they end up passing away and then you feel guilty because you didn't help you didn't help very much.

>> So you have that thing that you hang your hopes on and then that can help guide you right through that kind of lost feeling of because hope is so important to get through anything that's difficult, right?

>> Oh it's just good advice.

And I do want to remind you to take a little time again it's two hours but it goes really fast because the film has done so well but it will be available on PBS Passport throughout the summer just to ask for what is it called just caregiving caregiving.

>> That's the title of the film so you could just you know, carrier on demand or whatever type of service you have but that's what you'd like to see again it's really, really worth it.

And although we're talking about cancer right now, it applies to so many things and I think that the film even touched on some situations where a family member had Alzheimer's.

>> Yeah, And that was a loss to the rest of the family.

>> It's like who is this new person?

>> I don't know them anymore and they don't know me.

Right.

And that's a very challenging caregiving.

It is.

And so you're you're connected to the past, right?

More than the present they used to be that they used to be and for some people holding on to that memory of the person that they would have you know, that they knew they were committed to and who is committed to them and whether they are present in the same way inside they're the same person even if they can't express that and that's hard to hang on to when this person doesn't act the same way.

But it's important to mentally hang on to get you through it.

You know, I also heard a statistic that there are ten thousand people a day that turn sixty five ten thousand 65 and older which leads to maybe the lifetime or life era where they start to have major issues that have more needs, have more needs.

>> Caregiving is is needed more often in our last minute or two that we have here.

>> Marsha, what advice would you give to people that are interested in caregiving, what they can get out of it, why it would be a good service to provide job?

>> You know, there is something about giving in general, right?

The when we give of ourselves in general we always there's always something that comes might not come in the immediate moment but eventually there's either which is either review or see you shall receive.

>> Right.

And so in that in that regard our time is coming right.

>> I mean the documentary talked about Rosalynn Carter's quote that you're either that was beauty did care needing care will need care or you're a caregiver or something.

>> This is one of those where it's going to happen.

So yeah, I think it's participating.

Yeah.

Marcia, thank you so much.

>> Again, it's Marcia Hdfner and I appreciate all of you being with us tonight here on LIFE Ahead.

I hope you'll join us right here next Wednesday night at Seven Thirty.

You also can see this show on YouTube.

Just ask for that on your TV service and lots of ways you can watch this episode and lots of other LIFE Ahead episode Good night Cancer Services of Northeast Indiana.

Walking side by side with families on their cancer journey, providing emotional support and practical assistance... for yourself or another.

Cancer-Services.org.