The Changing Dynamic Between a Daughter and her Chronically Ill Father

Jennifer S. Riggleman
Problem Report submitted for
GES 625 Qualitative Research
at Marshall University
in partial fulfillment of the
requirements for the degree of
Doctor of Education
in
Educational Leadership
Nega Debela, Ph.D., Professor
Graduate School of Education and Professional Development
South Charleston, West Virginia 2012
Keywords: Illness, Family Dynamic, Caregiver
Copyright 2012 by Jennifer Riggleman
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Abstract
The Changing Dynamic Between a Daughter and her Chronically Ill Father
Jennifer S. Riggleman
This paper examines the change in dynamic between a daughter and her father
following his diagnosis of a potentially terminal illness. When a parent is diagnosed with
an illness, the relationship between parents and children often shifts from the parent
taking care of the child, to the reverse happening, when the child has to take over caring
for the parent. There is tremendous stress involved in this shift. I observed this
relationship up close, and was able to interview the parent and the child in this situation
and found that not everything about this change is negative. I did non-participant
observation twice with the two of them and then conducted interviews with each. In spite
of the difficulties that presented themselves as part of the illness itself, both of them saw
positive aspects in their lives and their relationship as a result of the diagnosis and even
some depth to the relationship that had not been there prior to the father getting ill. No
one ever wants to hear bad news from their doctor, and this physical battle continues on
for the father in this study, but there is hope and compassion in the midst of it, which was
seen in the dynamic with his daughter.


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Table of Contents

Abstract ............................................................................................................................... ii
Table of Contents ............................................................................................................... iii
Introduction ......................................................................................................................... 1
Literature Review................................................................................................................ 2
Description of Subjects ....................................................................................................... 9
Process .............................................................................................................................. 10
Interviews ...................................................................................................................... 11
Interview Questions: ................................................................................................. 11
Setting ....................................................................................................................... 11
Results ............................................................................................................................... 12
Interview Answers ........................................................................................................ 12
Themes .............................................................................................................................. 15
Role Reversal ................................................................................................................ 15
Depth ............................................................................................................................. 15
Gratefulness .................................................................................................................. 16
Conclusion ........................................................................................................................ 16
References ......................................................................................................................... 18




1

The Changing Dynamic Between a Daughter and her Chronically Ill Father
Introduction
The way that people interact with each other is often very interesting. Just how
interesting this interaction is, often reflects the personality of those involved. When this
interaction is between family members, there is sometimes tenseness to the situation due
to a multitude of things including differences of opinion, differences in life situation, or
even just plain jealousy. Often, adult children do not want to be given advice by parents
or told how they should do things. This could include parenting advice for the
grandchildren, how to cook the turkey, or even how to clean the house.
Everything in life is subject to change without notice. When someone finds out
that they are ill, and particularly when the illness is chronic and possibly even terminal,
those family relationships take on a different look and feel. All parties may tend to be a
little more patient and accepting of the others, and have more understanding. The
opposite may also be true particularly if family members find themselves in a caregiver
role. They may feel that they are being taken advantage of, may have feelings of
selfishness like, “I shouldn’t have to do this,” or “I have to sacrifice too many things.”
This situation may also prompt animosity among family members. Thoughts like,
“He/She should be doing more so I don’t have to do it all,” or “He/She thinks he knows
everything and isn’t taking my suggestions into account.” The ill family member may
feel very guilty that their illness has caused all of these problems not just for themselves,
but for family members at home.
This is the situation that emerged in a local family, and I have had the privilege of
being able to be a witness to the change in dynamic between a father and daughter. The
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father began feeling bad about a year ago following a root canal. After multiple visits to
the dentist who had done the procedure as well as to other dentists and oral surgeons, the
fact that whatever was going on with him was something besides a messed up root canal
began to emerge. Many procedures, biopsies, doctors, and hospital visits later, there is
still no diagnosis, but treatment has begun. This has been frustrating to the father and
daughter both because they are still not completely certain what they are dealing with.
This is discouraging since tissues for biopsies were taken from multiple sites and sent to
at least 4 different labs at John Hopkins medical center, which still gave uncertain results.
In spite of this, the team of doctors planning his care came up with a treatment plan to
attempt to stop the disease process and admitted that this was a “best guess” as to what
that treatment should be. This treatment was started about 4 months ago and has been
successful at relieving symptoms and appears to have halted the disease process. There
are many hurdles ahead from the damage done while that process was active, but things
are at least positive for now.
Literature Review
Sveilich (2007) states that the difficulty in relationships during a chronic illness
often comes from the fact that the person suffering with the disease is unable to continue
to be active or socially involved like they once were. This creates a feeling of isolation
for them because they are unable to keep up with others because of the illness. They may
feel that other people don’t understand their illness or what they deal with on a day-to-
day basis. She also suggests that people with any kind of a disease or disorder should not
allow that process to define who they are as a person. Developing that mindset is
important to do so that the patient comes to the point of realization that they may have the
3

disease, but the disease does not have them. Patients with chronic illnesses need to seek
out a support system to help overcome the isolation that so often comes with the illness
(Sveilich, 2007).
Schrovevers, Krajj, and Garnefski (2010) state that multiple facets of life
determine positive and negative perceptions during a chronic illness. The one
determining factor for these changes is the patient’s coping mechanism and how they
adapt to their surroundings, and to change in general. The cognitive and behavioral
coping strategies exist in each person and come to light more in those crisis time-periods
in our lives. These are critically important in the life of a patient suffering from a chronic
disease. They defined a positive affect as : “The extent to which a person feels
enthusiastic, active and alert”, and negative affect as “Negative mood states, including
anger, sadness, guilt and more.” They found that cancer patients perceived their change
in circumstances more positively if they had a positive affect, and perceived their change
in circumstances negatively if they had a negative affect. A patient’s ability to cope and
their perception of their circumstances can affect how they deal with the illness.
(Schroevers, Kraaij, & Garnedski, 2010)
Abraham and Stein (2012) performed a survey study to look at parent-child
relationships and the difference mental health problems in the parent can make when
associated with the caregiver. These adult child caregivers found that they had less
affection from their mothers, gave more to the relationship than their mothers, and
experienced more role reversal. They also felt obligated in this relationship, and feel they
will potentially have the challenge of providing for siblings because of the mother’s
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mental illness. This is a tremendous amount of pressure to place on adult children
(Abraham & Stein, 2010).
To avoid some of the potential dysfunction, family psychoeducation may be
recommended. These are designed to support families, particularly those that have a
family member suffering from a severe mental illness, according to Murray-Swank,
Glynn, Cohen, Sherman, Medoff, Fang, Drapalski, and Dixon, (2007). The stress chronic
illnesses place on families is tremendous. Psychotherapy for families seems to have the
best outcomes when it covers a 9 month time span. Patients with severe mental illnesses
have a strong desire to have their families participate in their treatment. The patients
were concerned with burdening family members, had privacy concerns, and expressed
skepticism about their family’s involvement in the therapy sessions. They still, overall
desire for their family members to be involved in spite of the patient concerns (Murray-
Swank, et al., 2007).
When patients with a chronic illness are first diagnosed, there is often a dramatic
change in their quality of life and change in lifestyle. Philip, Lindner, and Lederman
(2009) looked at the level of depression in those chronically ill with Lupus. They found
that a high percentage of those studied suffered from a high level of depressive
symptoms. These significant levels of depression can impact the patient in their social,
professional, and interpersonal area of their lives. These levels of depression seemed to
rise when the level of uncertainty associated with their disease process rose. When the
patient had a good understanding and grasp of their disease there was less depression
noted. This finding is in line with other previous research done showing similar results
with other types of chronic illnesses according to the authors. This higher level of
5

depression can affect many things in the patient’s life, which can then potentially lead to
the lower level of quality of life that they perceive (Philip, Lindner, & Lederman, 2009).
When caregivers have to deal with illness and potential depression among other
things with the family member they are caring for, the stress they face can come from
multiple outlets. Adding to the stress may be family resources, social support, and
coping resources as was already mentioned. Those caregivers that have more income
tend to tap into more resources for support and education than their lower income
counterparts. The two most common strategies for coping are normalization and
attribution of meaning according to Net Industries (2012). Normalization would include
doing those things that the patient would consider “normal” in their lives. Attending
events, working, controlling information that goes out to other people. Attribution of
meaning means defining the illness in a positive manner. By using this coping skill,
family members tend to see the illness as increasing cohesion within the family,
increasing their faith in God and improving their patience. (Chronic Illness - Stress,
Social Support, and Coping., 2012)
An interest study done by Pereira and Bothello (2011) describes emerging themes
they found in research conducted on sudden informal caregivers, or those who end up in a
caregiver role unexpectedly following an unexpected event of a family member. The
themes that they saw emerge were, losing control over time, feeling alone, failing
expectations, and taking care of someone else’s life. Caregivers saw a loss of their own
time. Not getting to do what they wanted to do when they wanted to do it. Their time
became controlled by appointments, or even medicine required by the family member
they were taking care of. Feeling alone emerged as an issue for caregivers because the
6

world they were used to living in such as getting together with friends, etc. completely
changes. The family member they are taking care of was often part of their life prior to
the illness but in a substantially different way which also contributes to the feelings of
loneliness. The third theme that emerged in caregivers was failing expectations. This
takes on various forms, but is essentially the disparity that exists between what the
caregiver needs and what is being offered to them. They may feel differently about the
assessment of the ill family member than healthcare workers, or may not feel that they
themselves are taking adequate care of the patient. Caregivers also were found to
struggle with taking care of someone else’s life. It’s not just taking care of them as far as
the physical illness is concerned but also having to take over other parts of the family
member’s life such as their finances, taking care of homes, or making all decisions
(Pereira & Botelho, 2011).
Rowe (2011) states that oftentimes caregivers feel isolated and feel that healthcare
professionals don’t listen to them or take them seriously. They also feel like they are just
left to cope with the situation and not provided with many resources to help the family
member or themselves. Caregivers need the assistance of professionals for help with the
ill family member as well as for emotional adjustment for the steep learning curve
involved with caring for someone. (Rowe, 2011)
This lack of caregiver support was further mentioned by Greene, Aranda, Tieman,
Fazekas, and Currow (2011). Communities expect that family members, significant
others, or neighbors will take care of a person when they become ill, particularly when
they become terminally ill. This presents many challenges not only for the one fighting
the disease, but also for the caregiver. These caregivers are unpaid, and have high
7

expectations that come from healthcare professionals. Some caregivers look at this as an
opportunity for growth, but others resent it or struggle with the tasks associated with it.
This study suggested and piloted a community network facilitator to assist caregivers
with these tasks and direct them to available sources of support. This facilitator would
also assess the needs of the caregiver. They found this to be very helpful for the
caregiver. (Greene, Tieman, & Currow, 2011)
In a study looking at burnout among caregivers of cancer and multiple sclerosis
patients, Ybema, Kuijer, Hagedoorn, and Buunk (2002) this study was done of intimate
partners of patients with those two disorders. Satisfaction was listed at a lower level
when there was underinvestment or underbenefit perceived by the caregiver, but this was
not the case with most of the participants. Caregivers experienced emotional exhaustion
and depersonalization of their ill partner sometimes, but overall were satisfied in their
relationship. Caregivers felt able to care properly for their ill partner when they were
satisfied with their relationship. This then led to a lower feeling of burnout. (Ybema,
Kuijer, Hagedoorn, & & Buunk, 2002)
Another study looked at caregiver burnout and was done by Del-Pino-Casada,
Palomino-Moral and Pandorbo-Hidalgo (2011). They found that many caregivers exhibit
avoidance coping behaviors which were shown to be ineffective. Similar to previously
mentioned studies, this one found that caregiver coping strategies should be assessed in a
systematic way and if avoidance coping strategies are identified because they are
associated with negative emotional effects on the part of the caregiver. If these strategies
can be identified early, then the negative emotional trauma can hopefully be avoided.
8

The identification piece they are suggesting be done by nursing staff. (del-Pino-Casado,
Frias-Asuna, Palomino-Moral, & Pancorbo-Hidalgo, 2011)
White, Jones, Toth, Charnizon, Grabarek, and Larkins (2002) reviewed coping
strategies of those who were taking care of ill family members and noted strategies that
were effective. Some of these effective strategies spending time together, sharing
feelings, expressing love, having open and honest discussions, including those that talk
about death and final arrangements, as difficult as those may be. These are healthy ways
to cope with the family member’s illness particularly for adolescent children (White,
Toth, Charnizon, Graberek, & Larkins, 2002)
34 million Americans serve as unpaid caregivers for other adults, usually family
members according to Fetterman (2008). According to Fetterman, AARP estimates that
these caregivers contribute $2400 out of their own money to help in their family
member’s care each year. Caregivers can suffer financially as well as emotionally. It can
also unlock a family’s hidden dysfunctions. The average caregiver in America is a 46
year old female. The most difficult part is the role reversal that happens when the adult
child must begin to parent their parents. (Fetterman, 2008)
Aging Concepts (2012) states that being a caregiver for a parent is one of the
hardest things you will ever do. It is time-consuming, thankless, and often exhausting. It
can also be rewarding, but the caregiver not only has to take care of the family member
who is ill, but themselves as well. They have a few suggestions as to how to make this a
more positive situation. The first is to be open and honest about what is happening with
the illness, and to maintain a sense of humor. Another suggestion is to be as prepared for
the future as possible. Talk to the ill family member about Advanced Directives and
9

other paperwork that perhaps needs taken care of. Remember that this caregiving may be
the last act of service to the ill family member. That may help the caregiver keep things
in perspective on the tough days. (Senior Caregiving, 2012)
A study done by AARP’s Public Policy Institute looked at what states are doing to
help with some of these problems mentioned above. They found that some states are
making good progress in access to resources and assistance for ill family members and
for their caregivers, while some states have a long way to go. Those states that are doing
well have achieved 3 primary goals that have made them more successful than other
states and at least on the right track to assist caregivers and their families. These three
goals include:
1. Improve access to services and choices in their delivers by directing state
Medicaid programs to serve more people in need and provide alternatives to
nursing home care.
2. Establish single points of entry into the system for easy access to resources.
3. Improve support to the families, and particularly to caregivers.
(Reinhard, Kassner, Houser, & & Mollica, 2011).


Description of Subjects
This study observed the interaction of a daughter with her father with her in a
caregiving capacity. The father is in his early seventies, kind, gentle, soft-spoken, and
still very active. He was working full-time at his business in town that he has operated
for close to 40 years. Physically he is very thin, and his clothes hang on him. He has a
10

noticeable large wound under his left eye, with that eye drooping and his face drawn to
that side. He also had a wound on the right side of his face on his lower jaw bone that he
kept covered as well. The daughter is in her mid 40’s with a husband, 3 children and a
full-time job that requires a tremendous amount of travel. She is also kind and
compassionate, but does not particularly enjoy the role of being a healthcare provider.
(O.C. Both of these subjects were extremely kind not only to me but to each other as
well. The daughter said, “I am no nurse, and this is really tough on me. I just have to
disassociate myself when I do this,” when she was changing dressings and packing one
of the wounds.)

Process
I spoke with the daughter after doing an observation with the two of them earlier
in the semester to see if I could do my research on them. She said that would be fine, so I
proceeded with obtaining IRB approval. Official submission of the project to IRB
happened on November 7, 2012 and final approval was granted on November 26, 2012.
Following that approval, the subjects were interviewed separately. They signed informed
consent documentation, had no questions regarding the process, and understood that this
was voluntary and they were free to stop the process at any point.
11



Interviews
I nterview Questions:
1. How would you describe your relationship with your father/daughter prior to the
illness?
2. On a scale of 1-10 how would you rate your relationship prior to the illness?
3. How have you seen that relationship change in the months since the diagnosis?
4. On a scale of 1-10 how would you rate your relationship since the diagnosis?
5. What have been the challenging aspects of this change?
6. What have been the positive aspects of this change?
7. What advice would you give others who find themselves in a similar situation?
8. If you could say three things to your father/daughter, what would they be?
Setting
The interview setting for the interview with the daughter was at her home in her
home office. She was scheduling appointments on the phone when I first arrived. No
one else from her family was present during the interview except her dog. She answered
questions candidly and thoughtfully and we talked for about 30 minutes.
The interview with the father happened 3 days later at his home. He was very
welcoming and we talked while we sat in the living room. He lives in a very comfortable
but not large home and everything was very tidy. The interview took approximately 45
minutes.
12

(O.C. The daughter was very comfortable talking about her experiences. The father
seemed more nervous when I got there, but much better after we just chatted for a little
while before getting to the interview questions.)
Results
Interview Answers
The first interview question of evaluating their relationship prior to when the
father became ill, both answered similarly. They both said that they had a close
relationship before his illness with very few problems. The daughter usually initiated the
conversations, looked to the father for advice, and he usually took care of things she
needed. She ranked the relationship prior to his illness as an 8/10 and he rated it a 9/10
for question 2. Both felt that it has always been strong.
Question 3 asked them to think of the changes they have seen in their relationship
since his illness became apparent. The daughter states that they have spent a lot more
time together out of necessity. There has been a role shift from him taking care of her
and giving advice, to her doing that for him. The daughter now has a new perspective
that her dad will not be here forever, which was really not part of her thinking previously.
She said she feels like her Superman has met his Kryptonite. She states they are also
more intentional in their conversations than they had previously been. The changes the
father noticed were spending more time together, a deeper relationship, and her having to
take care of him. He said he didn’t know what he would have done if she had not been
there for him.
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Question 4 asked them to evaluate their relationship on a scale of 1-10 since his
illness started. Both said the relationship has gotten better in spite of things and both
rated it a 10/10 now. (O.C. In the middle of all of the uncertainty and being required to
spend much time together, both of them felt that their relationship had improved in its
quality after his illness began) Question 5 asked about challenges that the illness has
brought to the relationship. The father could not think of any challenges and just said
that he feels bad that she has to do all of this to take care of him. The daughter stated that
it has changed her lifestyle and she has had to make many sacrifices to become the
caregiver. She also said a big challenge for her was that her dad was always the person
that she went to when things were stressful and now he was the one who was causing the
stress. The role reversal has been a challenge as well she states. There has been a lack of
understanding on the father’s part about the illness and the challenge continues with him
not listening to instructions. One example she gave was that he was on steroids and
chemotherapy pills so his immune system is compromised, and he has been told not to go
where there are crowds. When the daughter reminds him of this, he doesn’t seem to
understand why, and continues to go to the grocery store and other places where there are
a lot of people. (O.C. I asked to father a couple different ways about perceived
challenges in the relationship after his diagnosis, but each time he said there really
hadn’t been any.)
Question 6 asked about the positive aspects the illness has brought to their
relationship. The father stated that the daughter has been a huge help and really took care
of everything, so he didn’t have to worry about it. The daughter said it has forced her to
spend time with him, and they have both opened up and shared things that they would
14

have kept to themselves if they weren’t in this situation. This has also brought new depth
to the relationship. She stated that they used to just talk about things in the present. One
of the kids had a game tonight, or just information about what they were each doing.
Now there is more talk about the past and the future, not just small talk about today.
Question 7 asked what they would tell other people in the same situation. The
father stated that he would tell them that family comes first. Everything else can wait and
is not as important. Keep your focus where it needs to be which is on the people you are
closest to. The daughter said the biggest thing she would tell someone is to let other
people help you, but that has been very difficult for her. She said her dad gets
comfortable with the way she handles him and his care and she feels badly having
someone else do it even when they are more than willing and capable.
Question 8 asked them what they would say to the other person. The first thing
the father said was, “Thank God she’s my daughter.” He also said he would tell her that
he is really proud of her education and all she has achieved through that. The daughter
said she would tell him that she appreciates all he has done for her and for her family.
She appreciates the man he is and what he stands for. She also said, with a laugh, that
she would tell him to listen and follow instructions.
(O.C. These interviews were eye-opening and sad at the same time. Watching the
emotions on the faces of both of them broke my heart. They both spoke so highly of the
other one, and even in the midst of this physical battle he is in, there is such a visibly
strong connection between the two of them.)
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Themes
The interviews performed with these two subjects were not long in length, but
gave a great deal of information about how the dynamic in their relationship has changed
since the father became ill. A few themes began to emerge out of the interviews.
Role Reversal
Both the father and the daughter stated that since his diagnosis, the previous roles
that had existed in the relationship were changing. The daughter had always looked to
her dad for advice and information and used him a lot as a sounding board for current
situations in her life. He gave her the advice she was seeking and helped her with her
children, and supported things she and her husband were doing. Now that has shifted and
the father has become extremely dependent on the daughter for daily living. She handles
everything from making doctor’s appointments to laying his medicine out. He asks for
her advice and looks to her to make decisions about his care. There is even the fact that
the father is not listening to what the daughter is telling him is best for him, just like a
child would do to a parent.
Depth
Both the father and daughter noted that there was a new depth to the relationship
that had not previously been there. Both noted that there has been a necessity to spend
more time together than they did before, and this has created times to talk in depth. They
stated they have discussed family issues that go back many years that they had not talked
about prior to being in this situation. The daughter stated she still doesn’t think those
conversations would have happened had it not been for his illness. They both perceived
this change to be a positive one.
16

Gratefulness
The other emerging theme that came from the interviews was a thankfulness and
gratefulness on the part of both of them. The daughter was so grateful for all the father
had done for her in her life and the father was extremely grateful for what the daughter
was doing for him now. They both understood the sacrifices the other one had made for
them at different times in their lives and had a new appreciation for that since their
perspective had changed. There was some guilt at this point in their lives on the part of
the father since he felt bad that the daughter had to make so many sacrifices in order to
take care of him the way he needed taken care of. The daughter had a new understanding
for what the father had given to her and their relationship when she was a child and an
adult.
Conclusion
Interviewing these two subjects and getting to see the relational dynamic between
them has not only given them a new perspective, but me as well. I listened to both of
them talk about the challenges and positive aspects of what his illness has caused in both
of their lives. Nothing that they have been through has been within their control and they
are taking on the challenge the best way they know how, which is with the help of the
other one. In spite of the challenges, both the father and the daughter have been able to
see that proverbial “silver lining” in the situation. They both believe their relationship
has gone to a deeper level than it would have if this had not happened, and they view
each other with a new level of respect.
No one ever wants to hear that they are facing an unknown physical challenge that
will negatively impact their health and could potentially end their life. This father and
17

daughter have had to face just that. Because of his illness, they have been forced into a
new lifestyle that neither would have chosen, but they are seeing the goodness that has
the potential to shine through in the darkest hour.
(O.C. I was somewhat surprised at their responses. I know it has been a difficult time
for both of them and had expected that there would be more negative aspects to their
relationship than what I found during the interviews. They were both very candid and
open and did not give me any indication that they were holding any feelings back. As I
listened to their individual answers, the themes really did emerge. They were answering
similarly, and the change in their relationship seems to have taken the same turns for
them both. This was a tough assignment emotionally, but I actually really enjoyed it and
have learned a great deal.)

18

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