Phyddy Tacchi, RN, CNS, LMFT, LPC
Psychiatric Advanced Practice Nurse
The University of Texas, MD Anderson Cancer Center
Dr. Baile: Hello, I'm Dr. Walter Baile, Chief of Psychiatry at MD Anderson Cancer Center.
Often, when a person is diagnosed with cancer, it's the beginning of a difficult road ahead...a lengthy process for both the patient and the family caregiver. The following video is for the caregiver, who, after the shock of the loved one's cancer diagnosis, is left with the immense responsibilities of supporting his or her loved one, as well as providing for their own well-being. We hope the caregivers in this video will provide you with insight, hope and emotional support to assist you as you journey through the cancer experience.
Rusty: It's a scary situation to be in. Your loved one there has got the big word, CANCER. That word just by itself scared a lot of people. It scares me.
Cindy: Ralph lost 70 pounds and lost his hair, and he came back from this summer looking pretty rough, and people had a really hard time with that, and they would come up to me and say, 'how can you handle that?' and my answer is, 'what choice do I have?'
Dan: I think the hardest part was seeing her ill...on her back when she had the three ribs removed...and really helpless and frightened...
Helen: ...it is so overwhelming and I think immediately you are catapulted into another universe and we haven't been back into our old universe.
Narrator: A diagnosis of cancer is often devastating for the patient and the family. Understandably, the focus of medical attention is on the patient, but the caregiver, who performs a vital role in assisting the patient through the process, is also in need of support and help. Often alone and on a 24-hour-a-day schedule, the caregiver faces great demands, ones that require physical effort, emotional strength and spiritual nourishment. However, many caregivers have found unexpected benefits and blessings along the way, and there are those who have much to share about this unplanned journey.
Narrator: Terry Taylor is at MD Anderson Cancer Center in Houston undergoing an experimental stem cell procedure to treat a rare cancer of the fallopian tube. Initially, she had chemotherapy, but when follow up surgery a year later revealed that the cancer had recurred, Terry opted for this treatment. Through it all, Rusty Taylor continues to be at his wife's side.
Rusty: When she was first diagnosed, I was completely shocked, as we were not expecting it. It was like somebody walked up with a 2 x 4 and hit me... I was very angry about 'why is this happening?' And anger with the disease, because it turned my world upside down and has changed it forever. I'm a police officer ...in my job, I'm expected to solve the problem, and when this cancer came, there's nothing I can do about it. I can't change it. And it was very difficult for me to handle at first. When she was first diagnosed with this, I tried to do it by myself, but it was like everything kind of coming in on me as far as worrying about her... worrying about my work...just life's pressures building up, and your world has changed, and I got to the point where 'I cannot do this by myself.' I started going to a family group, where I was with other people that were going through this, that I'm not alone.
Probably the biggest...and I'm sure everybody else is having to go through this ...is the financial issue. My wife hasn't been able to work for over six months now. And so we're having to deal with one income, when we were a two-income family. I'm having to work extra jobs to keep up with her lost income... trying to stay above water...the biggest fear I have right now is...will this treatment work? And, if it doesn't, what? What's next? And it's probably that all I can do is hope and pray that it works. That's all I have...we're on borrowed time, I guess. Her clock has sped up, because of her diagnosis, and that's kind of difficult for me to deal with right now.
I took her to Alaska, before we came down here. I said...'I'm not going to worry about planning this two years down the road. We're just going to go ahead and do it. Lets' just go have some fun. Don't worry about what happens later on. We've got to do this now.' I just take it a day at a time. I just don't worry about what is going to happen tomorrow. Its just, 'what's going tohappen today,' and just deal with that. It's too much stress trying to worry about what's going to happen tomorrow.
Narrator: Cindy and Ralph Avery have been making the five-hour drive back and forth from their home in Louisiana to MD Anderson for 2 years. It was then that Ralph was diagnosed with recurrent melanoma, after having an original melanoma 14 years ago. He has now participated in three experimental treatments, the latest of which involved being in the hospital to receive biotherapy treatments for an extended amount of time.
Cindy: The biochemotherapy was really rough, and I don't know that anybody could have prepared us for what that was going to be like. Just kind of one of those things that you had to kind of learn on your own. I mostly stayed in the room, because he was pretty much 24 hours a day needing someone there. There were times that you feel by yourself ...lots of times it was just me and him and he was asleep, so it was just me.
One day during the time Ralph was having the dementia, and I couldn't get him to eat, and I couldn't get him to do this, and I was very frustrated with all of that. One of my nurses, who we had had pretty much on a regular basis...walked in and I said 'you'd better deal with him, because I can't right now' and she said 'you need to get out of the room. You need to leave. We'll take care of him. You leave.' One of the things I struggle with the most is there are just days that I can't get it all together. I can't seem to remember everything and have it all lined out like I need to and prioritize or really even focus and it may not even be a bad day. It may not be a day that Ralph's having a bad day or I'm having a bad day. It's just that I can't seem to get focused on things and so I have to learn to just kind of let that go and whatever I get done that day, is what I get done.
This summer Ralph lost 70 pounds and lost his hair, and he came back from this summer looking pretty rough, and some people had a hard time with that, and they would come up to me and say, 'how can you handle that?' And my answer is, 'what choice do I have?' I mean, that's my life and that what I do, and I can't fall apart. I do have my falling apart moments but I'm able to I think need to do that sometimes. As a caregiver, you need to kind of just do that...have a good cry or whatever but then it's like you just get up and do it again.
Narrator: Dan and Elisabeth Greathouse were married only two years before her diagnosis with a rare form of osteosarcoma. Elisabeth had surgery at MD Anderson Cancer Center and is now undergoing chemotherapy.
Dan: I can remember telling her 'if you're looking for the strong, silent, John-Wayne type, you've got to forget it...man, I can't do that for you. All I'm going to be good for is to be your chauffeur and your gofer, and so I've always taken her to every appointment, drive her right up to the door. Whatever we need to do...get her where she needs to be.
Narrator: To receive treatment for several months at MD Anderson, Elisabeth and Dan had to move to Houston...11 hours by car from their home in Portales, New Mexico. It meant a complete restructuring of their lives. Dan was only a few years from retirement.
Dan: ... when we were told we were going to be down here six months to a year, one of the things we did...we went, wow, what are we supposed to do?...am I supposed to get a job in Houston? Am I supposed to move? I can remember sitting at my desk saying I cannot do this job anymore and then I was in a Catch 22, because I could not quit my job, because I needed to keep the insurance for my wife.
Narrator: Dan, a recovering alcoholic, wanted to make sure that, in dealing with his wife's illness, he did not resort to an old reliance on alcohol.
Dan: ... for me to drink would literally destroy the whole situation. Elisabeth would have no support. There would be nothing. I'm a strong believer in support groups. I've seen it work time and time again. It's wonderful to have support and people that love you and care for you and are praying for you. Those are very, very important things... I think that sickness, disease, death...these things are going to happen to all of us. And so that's just part of the human condition. And this just happened at a time we wouldn't have planned, but then again I don't think it happens at a time that anybody would plan.
Narrator: Just a year ago, life seemed to be going well for Helen Dreyfus. She and her husband, Richard, an attorney in Houston, were busy raising their two sons, Daniel and Adam. And then suddenly, seven months ago, Richard was diagnosed with advanced colon cancer that had spread to his liver. Since that time, he has had surgery, including a colostomy, and is now undergoing chemotherapy. And life as the family knew it...has changed.
Helen: It really is the hardest thing I have ever done in my life. I'm sure I will not face anything harder unless it's the death of one of my family members. I remember looking out the window and saying, 'well I knew this life was too good to last'...feeling that my life with Richard was just too good and would be gone. And I kind of slapped myself and said, 'oh, come on,' and bucked myself up and went forward, but I think that's part of what a person might go through, and I think a person might go through some very appropriate selfish fears...'how will I go on? What will I do?' If your patient is your breadwinner, there are huge fears of...' financially what will happen to us,' and I think it's important to go through all that, and if you just go through it and be gentle with yourself, then it'll get over. And it'll pass.
Narrator: In order to control her emotions, Helen says she focuses on the facts about Richard's disease and treatment rather than second guessing, creating imaginary scenarios or jumping to conclusions.
Helen: I also started kicking into my mission for facts...that's also been my strategy. I wait for a fact. I do not allow my mind to go down the dark path of 'what if' or wondering...
Narrator: A special comfort to Helen has been writing in a journal, which no one else sees.
Helen: I feel very comfortable putting all my dark thoughts into the journal. Writing in a journal is a gift, because somehow that erases it here. I don't know how.
Narrator: Helen takes special care with her children...trying to create a normal family life and communicating with them about their father's illness.
Helen: Each person will have a different reaction to cancer. Each person will have a different timetable in dealing with cancer. One of your children may cling. Another child may withdraw. One child may want to talk. One child may ignore. I think it's critical to let people deal with it at their own pace. People faced with a life-threatening disease can make a choice. They can choose to die from the disease, or they can choose to live with it, and I think it's such a simple thought, but it's so paramount that one make that choice, and our family has chosen to live with this – to find the joy, to have fun, to thank God for the positives.
Narrator: Phyddy Tacchi (Tah' ki ) is a psychiatric advanced practice nurse, a licensed marriage and family therapist and a licensed professional counselor. At MD Anderson, she works with patients and caregivers to assist them with the emotional challenges of living with cancer. Her interest in caregivers arose from her own personal experience as a fulltime caregiver.
Phyddy Tacchi: It's almost impossible for a caregiver to know what lies ahead. What their life will become. I hear more often than not, cancer brought us closer together. We never thought that was going to happen. And over time our relationship has become so much better. Caregivers often talk about... 'I am so tired,' and that's for good reason. One day the patient feels well. Another day they don't feel so well. It becomes an emotional roller coaster. ...and it's just meeting that up and down feeling all the time of what's going to happen next, what's going to happen next, that sets up the scenario for emotional fatigue.
Narrator: It's important to learn new emotional skills which can assist the caregiver in managing physical and emotional fatigue.
Phyddy Tacchi: Oftentimes I hear caregivers say 'I'm so worried about what's going to happen tomorrow that I wasted today.' Learning to live one day at a time is probably the greatest stress reducer of all time. It's something that we humans do not naturally do. Most of us have to learn how to do that...how to focus our energy on what needs to be done right now, today, because today is all we have. Yesterday is gone, and tomorrow is unknown, so how can we build today to make this a satisfying day?
Helen: It takes a lot of emotional energy when you start wondering about the 'what-ifs...so one day at a time is a gift...It really helps you see the sunset, helps you get out and play with the kids, teaches you, 'gosh, Richard feels horrible today.' And that is today, and tomorrow will be a different day. Maybe he'll feel bad again. Maybe he won't.
Dan: There's a lot of fear that I try to mask with being jovial or whatnot, but it's hard. It's difficult. It has definitely changed the focus...say, like the future, what we're going to do in the future as to just the focus on today.
Narrator: While the caregiver may not be able to control a difficult circumstance itself, he or she can learn to control their emotional responses to it. This will conserve emotional energy to continue onward.
Phyddy Tacchi: The illusion of control is there for all of us, until cancer hits. Once cancer hits, it becomes an abrupt learning exercise to realize that we don't have control over very much at all. Ultimately, the only thing we have control over is controlling our mind, controlling our thoughts to focus on what needs to be done today and not let our fear spin out of control about what tomorrow may bring.
Dan: I finally just kind of sighed and let go. I said, well, 'it is all in Your hands, God. It is...none of this, not even my own life, is in my hands. It is...none of it. I think that was a big turning point.
Helen: People who know me know I like control and I like my calendar, and I like putting things on my calendar and everything now on my calendar is in pencil, because you often get thrown a curve ball. Don't sweat it. Give up what control you can. Spend the time on what gives to you, what gives to your children and what gives to your patient.
Phyddy Tacchi: Support groups I believe are critical to the caregiver's adjustment to this new role. Strength can be had from being with fellow comrades in this battle against cancer.
Rusty: Having other people there going through what I'm going through...it's a very comforting thing...it's my cocoon that I can feel safe in, and I can draw on other people that are going through what I am...support with them.
Phyddy Tacchi: The caregiver begins to feel quite guilty in taking care of themselves. How dare I take a break from this when the patient needs such monumental things to be done for them? How dare I drive away from this and go do an errand that's pleasurable for me? The caregiver by necessity has to learn to take care of their own needs in the midst of this often catastrophic crescendo of needs on the patient's part...something that takes you away from cancer, cancer, cancer. That keeps a toe hold in the so-called healthy normal world.
Helen: You need to have your support system. You need to take care of yourself first, which I do think there are male and female caregivers, but I tend to think that women are not as good at taking care of themselves.
Phyddy Tacchi: Care giving can become a spiritual dilemma. I see it over and over. It becomes a search for spiritual sustenance.
Helen: There is nothing in life that will throw spirituality at you like a life-threatening disease...I am in awe of it. I am moved by it. You know, sometimes I'm moved to screaming by it, but my belief is not that God planned for Richard to get cancer...I don't really even go there, because...that would use up some extra energy and I don't have extra energy.
Rusty: I'm not in control. It's been difficult for me to realize sometimes. I'm not in control of this. There's nothing I can do other than put my trust in Him.
Cindy: You ask the question of, 'why is this happening to him? It's not fair.' And I really went through a time, when I was questioning God about all of that, and I got angry at God about it, but that wasn't working for me...being angry all the time...and so I went back to a counselor, that I use at home, and we worked through that and I was able to get a peace that said ...I've heard our pastor sometimes preach on the why me and sometimes its kind of why not me? I walked away from that counseling session feeling like we were part of a bigger plan and if God wanted to use us however and that was ok. And it really was ok with me...
Phyddy Tacchi: Through the cancer experience it becomes necessary to examine issues that most of us in our daily life avoid or don't feel the necessity of looking at. All of a sudden it becomes important to look at one's life...why was one created, what is the meaning behind our life as they do some life review, and what is their own mortality looking like...how do they want to be remembered? Those are big questions and a care giver is faced with those same big questions about their own mortality.
Dan: I was extremely depressed not about her but about me and about everything I'd done in my life and it was really rags, it was nothing, it was not of value, it amounted to nothing and I kind of went off too much in that direction about beating myself up and saying you know...'should have done this. I should have been this way...I should have been a better Christian and a better person, better teacher, better brother, better son...those kinds of things...so I went into a real extreme self-examination mode.
Helen: ...it's almost like I do see a little bit more of God's plan. I still have no idea what it is, but there's something really big out there and it's nurturing me.
Phyddy Tacchi: When I became a caregiver, little did I realize that that time of heartbreak and hurt and sense of pending loss was ever going to carry a component of blessing. It became the most stressful thing I've ever done, but it also became the most honorable thing I ever did. And I hear other caregivers confirm that...that yes, it carries a huge element of sacrifice. Caregivers put their whole lives on whole in order to tend to this loved one, but the value system becomes completely rearranged where they begin to see that all that other stuff is not important...all the material acquisition, all the time we spend getting that stuff really doesn't matter. What matters is family and what matters are the people that you love, and it becomes an exercise of service to the person that they love.
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