ask dr. giles

Geret N. Giles, Ph.D.

Geret GilesDr. Geret Giles is a licensed psychologist with a private practice in Orem, UT.  He received a Masters Degree in Marriage and Family Therapy from Brigham Young University and a Ph.D. in Counseling Psychology from the Pennsylvania State University.  Dr. Giles works with individuals, adolescents, children, and couples suffering from a wide range of issues including depression, anxiety, and relationship difficulties.  He is often asked to address psychological issues for large groups in the community.  He has the reputation as a knowledgeable and engaging speaker.  In January of 2007, he lost his best friend to cholangiocarcinoma.

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Every decision is mine alone, it's frightening.

How do I tell my children?

Am I just existing? Will it ever get better?

How do I address cholangiocarcinoma and death with grandchildren?

How do I balance life, work, family, extended family, stress?

How do I help him cope with the depression as he comes to terms with the fact that he is dying?


Roberta writes:

I'm 77 YOF, diabetic, with liver CA due to islet cell pancreatic CA 5 yrs ago. I have CA pills to begin this week, am afraid, putting off taking them. I am alone, keep my home alone, 1 son who is out of town a lot, and without emotional support. Where can I turn, can't afford to hire people to visit me, etc. Every decision is mine alone, it's frightening.

 

Dear Roberta,

Feeling alone in the face of a significant challenge can undermine our confidence and sap our motivation. My heart goes out to you and to all those who feel alone when facing such a difficult challenge like cancer.

I am so glad you found this website and have posted a question! The truth is, Roberta, the Cholangiocarcinoma Foundation was created for you. For you and for thousands of others like you who have felt alone in the battle against cancer. Those who formed this foundation also felt alone, but realized--after gathering information and trying to find answers--that they were not. In the process of trying to understand this dreaded disease, they found many others who felt the same way. They found patients, their families and friends, doctors, and researchers who were all making their own efforts, but there was no coordination and no mutual support. There was a great need for collaboration, understanding, research, and education.

Despite feeling alone, Roberta, you definitely are not. You have an entire community of people who visit this website who are instantly interested in your situation and can immediately relate to your feelings. They have experience in dealing with this disease and they are happy to share what they know. There are discussion boards, live chat, patient profiles, and many other things to help you find the information and support needed.

Besides the powerful resource of cholangiocarcinoma.com, there may be other local sources of support:

  • Your doctor/oncologist. He/she may be able to refer you to additional support available through your medical insurance or other government agencies (in the US: Medicare, Medicaid, and the Veterans Administration).
  • Your church or synagogue.
  • Programs and support groups offered by the clinic or hospital where you are receiving treatment.
  • The American Cancer Society (www.cancer.org)
  • Your local senior citizen center.

Please remember, Roberta, that there are many others who share your concerns and have experienced what you are now experiencing. We can and will help you. You are definitely not alone.

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Donata writes:

Dear Dr. Giles, First of all, I am sorry for the loss of your best friend to cc.My husband was dx. 9/07 & our life outlook has changed to say the least. I mean he has a wonderful attitude, positive ect. however I have a question regarding our 2 boys. Ages are 12 & 15, they know their Dad has cc, inoperable, being treated with chemotherapy weekly , however We have not yet told them the severity, nor do we know if we should. We we told 1-3yrs , however my husband does not want to have them worry, or have it effect their school life. I have mixed feelings about telling them & need advice. Family members have voiced concern that they might hear it outside the home as our community has a large benefit they are giving us & our sons are aware of & are to attend that night. Any advice from you would be so much appreciated.

Take Care.
Denise & John Creavin

I can see your dilemma. On one hand, your husband has three years or less to live and that feels like a significant reality to address. On the other hand, you don't want your 12 and 15 year-old sons to be constantly distressed about their father's condition.

This dilemma is based, in part, on the assumption that understanding the full ramifications of their father's health circumstances will be a burden to your boys. I'm not sure that will be true. In fact, it is entirely possible that your boys sense they are not being told everything and that is proving to be a burden even now.

Your husband doesn't want your sons to worry. That is an understandable parental concern. Worry, however, is based on what is not known. The key, then, for decreasing the odds that your boys will worry is to make the unknown known. By talking about the various scenarios which may play out in your husband's remaining time, you will contribute to a sense of preparation rather than fear for your sons.

By talking openly, you are actively creating your own reality regarding your husband's death, rather than reacting to death as a thing to avoid considering at all costs. I have heard it said that it is better to be the hammer than the nail. In other words, we humans do better when we chose to act rather than to be acted upon.

I think your sons are old enough to be told what there is to know. They may take it hard at first. Their grades and mood may suffer, but that is normal. Their reaction is an indication of how significant their father is to them. Would you really want them to be emotionally unaffected by the news that their father didn't have long to live?

Finally, maintain a position of emotional availability to your sons. Give them ample opportunity to talk about what they think and feel about their father's failing health. They will probably rarely take advantage of the opportunity, but every once in a while they may surprise you and you must be ready (hint: adolescents seem to be most ready to talk openly when it is an hour or two past the parents' bedtime).

The time you and your sons have left with your husband should be spent loving and laughing and learning from each other. That is best done in an atmosphere of openness, devoid of fear.

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Betty writes:

Am I just existing? Will it ever get better?

On April 10th, it will be 1 yr. and 8 months since losing Sam. I feel like I am doing everything possible but recently two of my closest friends suggested that I get some professional help. The reason that this got my attention is that one of them lost a daughter and a spouse so she has been there and does understand. Will seeking professional help at this time do any good? I feel like I am doing all the right things that are not signs of depression but every moment that I am not asleep, Sam is constantly on my mind. I'm working every day, I go to social events, I shop, I play the piano for Sunday School, I study my Bible, I have probably read 50 books on grief, I paint, I do all of my yard work, I'm planning an addition (art room) to my house, I entertain some, still redecorate my house which I use to really enjoy and help others with their decorating. I use to be so full of life and now I really don't enjoy anything anymore; the sadness and loneliness are just absolutely overwhelming. I can cry at the drop of a hat and like Marianne said - been in some pity parties a bunch of times. Going home to an empty house everyday and waking up to an empty house every morning is just not working. By the way, I have a cat. Sam and I worked together for probably 40 years, were married for 34 years and did everything together. He was absolutely the love of my life.

Any advice? He certainly would not approve of my grieving; he was such a strong individual. I thought I was too; I think while he was here I drew my strength from him and now that he has gone, I don't have it anymore.

I admire your ability to keep moving despite your significant loss. You describe a life which appears to be full but not fulfilling. It seems like you are doing many good things, but those things are devoid of feeling. This is very common in the wake of loss and is part of the grieving process--even when it has been over a year. Apparently, some of your close friends have seen the emptiness you feel and have been concerned enough about it to address it with you. You have caring friends!

What you are experiencing is a manifestation of what a colleague of mine calls "The Law of the Universe." Would you like to know "The Law of the Universe," Betty? Are you ready for the "Law of the Universe?" OK. Here it is: "The Law of the Universe" states that if people don't get a chance to talk things out, they'll act them out. In other words, if we don't get a chance to talk about our emotions, they will come out in our behavior.

In your case, it seems like you are keeping your grief to yourself and what's coming out in your behavior is a kind of an emotionally muffled (depressed?) existence. You mentioned staying busy, reading an impressive number of grief books, and consorting with your cat. You did not mention much in the way of talking with others about your emotions and what it is like to be you at this time of your life.

Sometimes people confuse grieving with complaining. To me, they are very different. Complaining is a passive behavior where we assign responsibility for our circumstances to anything but ourselves. Complaining keeps us stuck where we are. Grieving, on the other hand, is a process of coming to terms with our loss and its impact on our life so we can move forward. I tell my clients that we don't decide when we're done with grieving, grieving decides when it's done with us. It takes as long as it takes--with no regard to the calendar or our convenience.

The task of grieving includes "talking it out" ala "The Law of the Universe." It sounds as if your friends have recognized that this process of "talking it out" is missing in your life.

There are many arrangements which would offer us the opportunity to "talk it out:" conversations with family, friends, church leaders, or professional counselors. Many people will choose to address their grief with a professional counselor because it is private, the counselor is educated and experienced, and there's no worry about overburdening the counselor--they are trained professionals!

Hospitals and medical centers often maintain a list of grief counselors to give to those who have recently lost a loved one. Another way to find a good grief counselor is by word of mouth. Perhaps your friend who lost her daughter and a spouse may know of someone?

Not everyone who loses a loved one will go to therapy for it, but I believe all would benefit from it if they did. You may want to consider visiting a grief counselor. You may find that "talking it out" is the missing element to moving forward in your life.

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Michele writes:

My husband is just coming to terms with the fact that he will not go on much longer. Maybe days/weeks. He is obviously very depressed ( this was a shock as he really expected to go through many years of treatments like Jeff G.) Am having problems trying to help him feel steady, as he hates getting "weepy eyed" and feels it is a loss of time and energy and makes everyone terribly sad. I have tried to encourage him to let it go..he has reason to feel sad. He has also upped the antidepressants, but it is weird, they seem to have little or no effect now. He is totally against talking to a therapist or someone else as it is excrucitating for him to speak of all this and more importantly talk about himself. He is a private and shy person, and the emotion of it all is very painful for him. Any suggestions appreciated.

My heart goes out to you and your husband. Contemplating the end of one's life is a sobering experience that can have a transforming effect on self and on our relationships with those around us. I've witnessed several people face the inevitability of their own death and, combined with others' writings on the subject, have come to a few conclusions:

  1. Knowing that death is coming gives us the advantage of getting things in order (funeral services, last-minute business, how/where to spend the last days/weeks, etc.).
     
  2. Knowing that death is coming gives us time to take inventory of the life we have lead and celebrate what it has been.
     
  3. Knowing that death is coming allows us to discuss how and for what we want to be remembered.
     
  4. Knowing that death is coming provides us with the opportunity to make absolutely sure those closest to us know how we feel about them.

Having said all this, however, it is also important to recognize that each person has the right to face death in his or her own way. Given the short amount of time he has left, I doubt your husband is going to drastically change his approach. My advice is to respect the approach he has chosen and support him in his choice. It may or may not be the approach you choose for yourself. You certainly would not want to make him feel like he did not measure up to your expectations in the way he dealt with his own death. If you choose to be more open with your emotions, you will want to find at least one trusted friend (and a therapist!) who can hear you out and help you sort through your experience. You did not mention whether you had children, but if you do have children, I would suggest you help them address their emotions, too. See my earlier response to Jeff G about talking with children.

This difficult time will be sweetest if we remain flexible enough to allow all involved to grieve as they see fit.

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Cindy writes:

I am a mental health counselor in SC. My mother-in-law has cholangiocarcinoma, inoperable. She is 76. My husband is an only child and is trying to balance work and caring for his mother 3 1/2 hours away. His father is partially blind and deaf, diabetic and very difficult as he seems to be getting dementia. I am self-employed and have to keep up my income right now. I am having trouble emotionally supporting my husband and two daughters, being attentive to my in-laws and parents and being an effective therapist to my clients. (My mother cares for my stroke disabled father in their home 4 1/2 hours away). I constantly daydream about finding some other line of work to ease off the stress, but wonder if this would be too impulsive given my state of mind. I have an ethical responsibility to keep it together don't I ? I don't know how to balance it all. Any suggestions?

First, Cindy, let me say that I very much respect all that you are trying to do. It's all very important, right? And you want to do your part, right?

You are approaching your ability to help and support a little like my family approaches my wife's amazing strawberry jam. When we open a jar, we are very generous with our helpings (it's delicious on toast and fresh-baked rolls!). All too soon, however, we're at the bottom of the jar. We reach and scrape with the butterknife to try to get more of that fabulous goodness out of the jar. I feel regret and guilt when I finally put the jar in the sink and fill it up with water to soak: there's probably still another half-spoonful of jam in there if I would just scrape a little longer! It's like I'm in denial that there's a finite amount of jam to go around. I wish there was an unending supply. But there is not. Do you see where I'm going with this?

In a related way, you might be in denial that there's a finite amount of you to go around. You might wish there was an unending supply. But there is not. Your wistful imagining of another line of work is evidence that you are burning out. We can't have that. You are too valuable. Without some emergency intervention, you are likely to become less and less effective. Please do the following three things immediately:

  1. Resist the urge to make a major life change right now. Don't change jobs, relocate, or get a tattoo just yet. Let's first take stock of your current situation and then decide what must go.

  2. Second, ask yourself this question, "What, on the list of things I do, are the things that only I can do?" Two possible things on that list might be 1) be my husband's wife, and 2) be my daughters' mother.

  3. Keep doing the things that only you can do, and divest yourself of all others. Let others do them. There is not enough of your fabulous goodness to go around, Cindy. Imagine you are in a hot air balloon plummeting to the ground. You must jettison everything you can to stop its dangerous descent: fuel tanks, ropes, even pocket change. Everything that can go, must go if you are to avoid disaster. And, Cindy, make no mistake about it, you are heading for disaster. You must carry these three things out immediately so you don't come crashing to the ground.

In addition to these three things, let me emphasize the importance of rest and fuel. Please take steps to insure that you are getting adequate rest and you are eating right. Rest and fuel are basic building blocks to good mental health. After you have done the three things I have suggested, keep an eye on your emotional descent. If it has slowed or stopped, congratulations! You have successfully made progress in your own self-care. If not, write back and we will talk more.

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Jeff G writes:

What is the best way to explain to my grandchildren age 6 and 4 about my disease of CC and that PaPa will be leaving them. I guess timing/when and how. What would be less traumatic? Is simply saying I'm sick and going to heaven to be one of god's angels? My Daughter happened to mentioned to me the other day she said she had to figure out away to explain this to the kids. Due to a divorce, my daughter and grandchildren are living with us, so the bond of love is pretty strong. Any insight/advice would be greatly appreciated. I worry so much about my family and how things will work out once I leave this world. It actually frightens me more than death. I think?

Thank You,
Jeff G.

P.S. I don't plan on leaving for many months to come, but CC has a mind of it's on. It has mets pretty much throughout my body now.

Talking to children about death and dying is a delicate balancing act. On one hand, we want to acknowledge their feelings, and our own, about separation and loss. On the other hand, we want to reassure and help the children maintain some semblance of order and security in their ongoing lives so they feel confident about their own futures.

When talking about something "new" to children (whether it's drugs, sex, divorce, death, etc.) it's often helpful to think about the conversations as taking place over time on multiple occasions, beginning generally and moving to more specific information. You would first start with conversations to gather information from them about what they know and how they feel about what they know. The sequence of information-gathering conversations could go something like the following. Remember, there could be multiple conversations over time on each topic.

1. Conversations about death.

  • What do they already know about death?
  • How do they know it?
  • How do they feel about what they know?

2. Conversations about your illness.

  • What do they know about your illness?
  • How do they know it?
  • How do they feel about what they know?

3. Conversations about your illness as it relates to death.

  • What do they know about your illness as it relates to death?
  • How do they know it?
  • How do they feel about what they know?

After gathering information about what they already know, then you must decide what you want them to know from you about your illness and how it relates to death. Here are some questions to consider:

  1. How do I feel about my illness?
  2. How do I feel about death?
  3. How do I feel about the prospect of dying from this illness?
  4. What do I want these children to remember about my attitude towards dying from this illness?
  5. What do I hope they learn from me about this time of my life?

After you have spent some time answering these questions, you are ready to talk with them. You'll notice that I haven't told you what you should say. That's because I don't think there is one thing that you absolutely must say--besides communicating to them that death is a normal part of our life experience. It is more important that you are clear and genuine in what you say rather than saying the "right" thing. Also, please remember that the conversations will most naturally take place over time on multiple occasions. Don't worry about saying the "right thing" at the "right time." You'll likely have more than one chance to tell them what you want to say, and the more you talk about it the more likely it will be that they will understand what you are trying to convey to them.

In summary, be sure to spend time assessing what they already know and how they feel about what they know. Next, decide what you want to convey to them. Finally, make time to convey those things. Please remember that there will likely be multiple conversations about this over time, so let go of the expectation that you have to say the "right thing" at the "right time."

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