ask dr. giles
Geret N. Giles, Ph.D.
Dr. Geret Giles is a licensed psychologist with a private practice in Pleasant Grove, Utah. 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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*Dr. Giles is a licensed psychologist, he cannot and will not offer any medical or treatment advice relating to cholangiocarcinoma.
How can I get my mom to back off? She is driving me nuts!
What can I do to ease my pain and devastation?
I'm overwhelmed. Any advice for a caregiver?
I want the best for my sister's kids, but I feel that she's made a mistake in choosing my brother. Any ideas?
Is there a guide that lists some steps I need to take for my family?
My husband goes everywhere with me and I'm worried about his reaction/feelings when I get answers from my doctor.
How do we begin to get a grip?
How can I help her, help me, and make the very most out of this chance to be with her, just her and i for what is going to be the last time?
I am filled with depression, anxiety and feel distraught every minute.
How do we manage caring for our Mom?
Family issues have surfaced causing stress in an already stressful time. I don't know where to go.
I thought I was in the clear, but they noticed a small dot on the liver. I'm on pins and needles.
We're so angry, my mom is my best friend.
Do you think it would be appropriate for me to do a motivational audio or video?
I'm feeling guilty about retiring early due to health reasons.
Do you have any tips or suggestions as to how I can recover?
What roll should I take with my husband's adult children?
Please help me stop hurting.
Is counseling the right way to go for my 17 year-old son?
How do I start to deal with all of this and will it ever get any better?
We are thrilled that I have been doing so well, but the longer I'm healthy the more terrified I get.
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?
I have cancer and my mother is caring for me. Actually, I hate to sound ungrateful, but she is smothering me. She is not allowing me to breathe. I am a more introverted person and need time alone to marshall my resources against this cancer and she is always tap, tap, tapping at my psychological door. I feel bad complaining, especially since so many have lost parents and would do anything to get them back.
My mom calls me every day at least once, and comes over at least every other day. She comes to my appointments. She stays with me during chemo. I feel guilty for complaining, but I can't help but feel overwhelmed by her. HELP!
How can I lovingly but firmly ask her to back off? She is driving me nuts!
How fortunate you are to have such a determined mother! Unfortunately, it appears her energies are misplaced and are creating a problem for you. It is likely that your mother is feeling helpless against this disease and is trying to lend her energies to your fight in any way she can.
Rather than telling her what you don't want her to do, talk to her about the efforts she makes which do help. Explain why those things help you. Also explain how necessary your solitude is to you and how helpful it is to you when she lets you have it. In the words of Lee Canter, the classroom management expert, "Catch her doing good," and tell her about it.
She will be grateful for the guidance you provide.
I lost my husband two days ago, he was my absolute everything, we just recently moved to casper and I have no support. I do not think that I can cope with his passing he was my best friend, my lover, and my husband, he was the love of my life and I don't want to do this without him! What can I do to ease my pain and devastation?
My heart goes out to you, Rochelle. You have lost so much in one stroke. Pain and devastation do seem to be the best words to characterize such an experience. I'm deeply saddened by your loss.
It is very likely that the world looks very bleak to you at the moment. Many who experience what you are experiencing now report a total departure of joy from their life. Everything seems dull and bland--even their sense of taste and smell seem blunted. The future looks dismal, laughter and mirth seem offensive, and even the sweetness of little children has little or no effect on their numbed soul. Is there anything more devastating than the loss of one's best friend, lover, and spouse?
I would gently suggest to you, Rochelle, that the depth of your feelings are a testament to the significance of the place your husband has in your life. The magnitude of your pain and devastation signifies how precious he was to you--and that's a good thing. Please do not hurry through this extremely tender time. Your sorrow is a result of the loss of a good man.
Honor your feelings as a result of a worthwhile and important relationship. You say you have no support where you live, but if you have friends or family who live farther away, please seek them out--even if it means looking up cherished friends with whom you have not spoken in a while. Also, consider getting involved with counseling or a grief group. Your doctor should be able to point you in the direction of support of that kind.
Finally, please know that you have support here at cholangioncarcinoma.org. Many here have some understanding of what it can be like to lose a beloved spouse. Talk with them as well.
Hey Doc, I'm the caregiver, and he's so sick..so miserable. Nobody really seems to know anything about this disease. As the care giver?S.O., I'm overwhelmed.
I think I'm starting to have panic attacks myself. I've been taking some homeopathic stuff for a week or so, seems to help a little, sometimes.
I pretty much have chemo brain myself with trying to maintain my life, and sustain his.
Any advice for a caregiver?
I applaud your tireless efforts to care for your loved one. He is fortunate to have someone so dedicated to him.
When I think about caregivers, I am often reminded of the safety instructions given on commercial airlines. There's a part where instructions are given about what to do if the oxygen masks for passengers are released. The instruction is that parents of small children should put on their own oxygen masks first, and then attend to their child. Care for the caregiver is essential in this instance. Without her own oxygen, the parent can't see to the need for oxygen of her child.
In a related way, it is important that you not neglect your own care while caring for your loved one. As you know, overlooking your own care makes you feel burned out and renders you less effective in your efforts.
Please take some time, regularly, to see to your own welfare and well being. Make sure you are getting adequate rest and proper fuel. It is important to have regular times to step away from his care. It may be that you will need to enlist others in the care of your loved one. Perhaps there are others in your and/or his circle of family members, friends, neighbors, church members, etc. who could help you. Please don't be shy in asking others for help. It's good for them! Being able to contribute to the care of another is good for their humanity.
As you take care of yourself, you will be more effective in taking care of your loved one. By doing so, you will be less likely to feel burned out or resentful and more likely to see your service as an opportunity for which you are grateful.
a Concerned Sister writes:
I would welcome any advice on this situation. My sister is due for the big surgery very soon, she was told the longest she will last with everything going well would be 5 years max. Her tumor has spread from the ducts to a good portion of her liver. She is hospitalized now for nourishment to gain strength for the surgery. She has a 8 and 11 year old. She has made her top choice of our brother to take the children. No one understands her choosing him. He is a great dad for the most part but is a heavy drinking, swearing truck driver (gone a lot) who is on his 3rd marriage. I am so hurt by her decision. That sounds so horrible. But I have been married to the same man for 14 years, have 2 children and a very much more stable life. Also I am both of her children’s godmother. I want to say something to her but am not sure how. I feel torn and selfish feeling like this at this time. But I love those kids, I want the best life for them possible. Any ideas?
It sounds like you are surprised by your sister's choice. Choosing a guardian for our children in our absence is a serious decision and I am confident that your sister did not make her choice without considerable thought.
What is not clear, however, is what were those thoughts I would suggest that you arrange a quiet and private time to inquire of your sister how she came to her decision. If you approach this conversation with an open mind and a sincere desire to understand her thinking, I think you will come away with a deeper love for your sister and a closer bond to her and her children.
Can you recommend a book that will guide me through preparing to succomb to cancer, one that will list some steps I need to do for my family. For example I'm getting around to finally doing a will etc. Thanks
My friend Marion shared this link to a resource of the National Cancer Institute.
I think it might be just what you are looking for. My thoughts and prayers are with you.
I have been dx w/cholangiocarcenoma. I'm 66 and about 3 wk. I have always been healthy and began loosing a lot of weight. Went to my Dr, had tests, finally biospy and dx. At first it was believed they could resection but now find it can't be done. My husband and I have been married 47 1/2 yr and have two sons. We've raised our granddaughter who is bipolar among other things and she can't live alone. Now the problem, my husband is very fragile right now. He's trying to be brave and almost hovers a lot of the time but he's scared to death. I'm feeling fine other than tired, am on infusion chemo as well as oral. My question, finally, is how do I help my husband through this? I did believe that I'd be fine in the end and this is just another journey to take but now I'm guessing, although have not been told outright, that I will die from this disease and fairly soon. My Dr, when I asked for a prognosis, said while looking at his lap, usually 6-10 months although at that time it seemed it hadn't spread. I chose not to deal w/it then as my husband was right there. He is still right there and goes everywhere with me. I don't want to shut him out but feel it would be so much easier to get answers if I didn't have to worry about his reactions/feelings when getting answers. I think this is my biggest problem right now. What do I do?
It is clear that your sweet husband loves you very much. It also seems that he is feeling fearful and powerless regarding the outcomes of this battle with cancer. Generally speaking, men are socialized to have the expectation that they are supposed to fix things. They feel good about themselves when they can fix things, and they feel like a failure when they can't. As a species overall, humans don't like to feel powerless, but men seem to be especially uncomfortable is situations where they don't know what to do to "fix it."
I suspect that your husband "hovers" because he doesn't know what else to do, but feels he must do something. What a loyal companion! It may be time to talk with him about what you actually need from him--including some time to yourself. I believe if he knew that giving you that time would be something that was helpful to you, he would be glad to do it--and could do so without feeling guilty for "abandoning" you.
There is also the issue of him being "scared to death," as you say. It may also be true that he is "scared of death," specifically your death. The uncertainty of death is ominous to us all, but I think talking about it and facing it will decrease the intimidation factor. There is no need to put on a brave face, but your husband may think there is. If he can see from your example that it is OK to talk about death--as well as life--then he may be able to do the same. Talking about life and death may bring up a host of emotions, but there is nothing wrong with that. It is my belief that all sorts of emotions have an appropriate place in the consideration of the powerful and sacred human experience of life and death.
My father was diagnosed 3 weeks ago with cholangiocarcinoma, we did not know the extent of the cancer and surgery was what was recommended. They removed gall bladder, 60% of liver and reconnected the intestine to liver. Now he has major complications, a leak somewhere and he is very weak. I am having a difficult time coming to terms with this as I was diagnosed with Breast Cancer myself this past March. I had my mastecomy in late April. We are 3 daughters and we are either fighting or crying, my mom is still in shock. Any suggestions on how to begin to get a grip? how do we come to terms that we thought it would me be fighting for my life and instead it is my father.
How difficult it must be to be preparing for one fight and then to have another serious fight added to it! Many times we are tempted to ask "why me?" when faced with such difficulty. We seek answers which will help us make sense of such challenges, but those answers are usually hard to come by.
While each member of your family is trying to make sense of what is happening, it is important to focus on pulling together instead of pulling away. For varying reasons, you, your parents, and both of your sisters are all in need of love and compassion from each other during this very challenging time. Providing that love and compassion for each other will require focusing on what it must be like for each member:
- What must it be like to have a daughter and a husband who are very sick with cancer? Do the requirements of caring for those loved ones feel overwhelming and impossible to meet? Is she afraid of being alone? What does a mother in shock need from her family to feel understood and cared for?
- What must it be like to be healthy, but to have a sister and father who are not? Is there guilt? Is there fear of being the next one to be sick? What does a healthy sister need from her family to feel understood and cared for? Is it even OK for a healthy sister to need anything from her family?
- What must it be like to be a father who is sick--sicker than his daughter who was originally the "one who was sick?" Is there a feeling of failure to be strong and confident? Is there concern about leaving his wife and daughters behind through death? What does a father who is sick from cancer need from his family to feel understood and cared for?
- What must it be like for the daughter who is also sick? Does she feel helpless to do more because of her own health issues? Does she feel alone in her fight because the focus is on her father? What does the daughter who is also sick need from her family to feel understood and cared for?
Claudia, your demonstrations of compassion and love will provide a much-needed balm to the members of your family and may be a catalyst for the others to follow suit. At such times as these, families can find comfort from each other if they will pull together rather than pull away.
Vicki Osborne writes:
My 89 yr old grandmother has been dianosed w/ this. I am going to Ohio (I live in NE) to spend 2 weeks with her, knowing it will probally be my last time. How do i handle this? I do not want to spend the whole time freaking out because she is dying, but yet, I want to squeeze everything I can into these two weeks. I do not want to upset her, but obviously at some point we will talk about it. I am also worried about what to expect from her from a medical stand point. Will she be in pain? How can I help her, help me, and make the very most out of this chance to be with her, just her and i for what is going to be the last time?
I think it is great that you are taking the time to travel and visit your dying grandmother. In advance of your trip, I suggest you take some time to determine the purpose of visiting her. Besides the reasons you may choose, I would suggest you go to visit your grandmother to celebrate your relationship with her.
Prepare beforehand to tell her--in specific ways, with specific examples--what your relationship with her has meant to you. Go through photos and other memorabilia in advance of your visit and choose some to take with you to share with her. Don't be afraid of the tears which may fall during this process. Before you go, write a thoughtful letter to her to give to her during your visit. A written message is good for people with health problems because the message lingers after the messenger is gone. People who are suffering physically usually have more quiet time than they would like, and reading a written message can provide real comfort because it brings the author back into the room. Your grandmother can read your letter as many times as she wants and feel your presence repeatedly.
This is a "wrapping up" time in your grandmother's life. She is likely reflecting on her life and how she feels about the choices she made and the experiences she had. To have her loving granddaughter tell her how much she has meant in her life would be a sweet experience indeed. Focus on the relationship and focus on your love and respect for her. That will mean that sometimes you will share your thoughts, sometimes you will listen to her thoughts, and sometimes you will just sit in serene silence together. The fact that you are taking the time to be there is what's most important. What actually happens during your visit is secondary, but if you will concentrate on your connection with your grandmother, your nurturing kindness during your visit will make for satisfying memories for both of you.
Sandy (Sophie) May writes:
Dear Dr. Giles, I am a 62 year old woman with cc and 75% of my liver metastisized. I have had to be so strong all my life and thought I was, but now I don't believe I am. I live by myself, and my mind is so dark all the time. I am filled with depression, anxiety and feel distraught every minute. Lately I have been logging onto the cholangio site more, but the number of old friends I have read about for the past year are being called home. I try to express my condolences, but I don't know what to say to anyone. I read the other posts, and they are so supportive and encouraging and offer such sympathy and generosity of heart, and I just don't know what to say. I am sobbing every time I'm on this site. I want to give others the same support that they have given me, and I feel just numb. I do have a minister who comes over a couple of times a week, and my nieces have been incredible, but they live far away. Family members have called me every day since my diagnosis about 14 months ago, but I can't seem to find any peace nor the ability to enjoy my time with family members.
My heart goes out to you during this difficult time. Please remember that being challenged doesn't make us weak--being challenged is what has made us strong. This cancer may represent your most significant challenge, yet, and therefore offers the most significant opportunity for strength.
You mentioned anxiety. Let's talk a minute about anxiety and how to deal with that. Anxiety is all about the unknown. Anxiety tries to get us to dwell on what is not known at the expense of what is. As a result, we cease to live in the moment and, instead, we exist in an in-between state--between what is and what might be. In your case, Sophie, it appears that your diagnosis has created a shift from what your life has been for 60 years to a life where cholangiocarcinoma casts a long shadow over everything.
May I suggest a response to this condition? Rebellion. I propose that you rebel against this oppressive regime called Anxiety. To rebel, you must reject anxiety's insistence that you remain preoccupied with the unknown. Anxiety wants you to dwell on questions such as "how long will I live?" or "why is this happening to me?" This leads to having a brain that is bogged down with unanswerable questions, which leads to a kind of emotional stupor and even depression. Instead, I would have you attend to the "here and now." Focus on today--on right now. Focus on the sensory information available to you. What do you hear? What do you smell? In the process of re-orienting yourself to the "here and now," I would have you pick out things which are right: the song of the bird outside your window, the smoothness of the countertop in your kitchen, the sight of your minister's caring face. Stick with the known rather than the unknown and you may find that the darkness that you mentioned will diminish and be replaced with clarity. That clarity will improve your day-to-day experience.
Our 87 year old mother was diagnosed with advanced CC in early March. The specialist told us that she had 2-4 weeks to live. With this prognosis, my three sisters and I decided that we would take turns caring for Mom at her home where she lives with my father. There was also the option for Mom to go into a long-term care facility, but we didn't see the point if she only had a few weeks. She lost her position on the waiting list when we declined. This is now the 11th week of caring for our mother and although we are glad that Mom is still with us and not in any pain, the strain is starting to get to us, especially for my sisters who are still working. We all have other family commitments, including my son's wedding in early July. I'm worried that the stress of caring for our mother is causing resentment towards our mother and toward our brothers and their wives who are not as involved for some family members. How can we better cope with this difficult situation ?
I think it is wonderful that you took it upon yourself to care for your mother in her remaining days. Your decision to care for her at her home made sense given the short amount of time she had left. She has lived longer than anticipated which, on one hand gives you more time with her, but on the other hand increases the duration of the significant commitment to care for her personally. Do you think you would have made the same decision if you had been told that your mother was going to live 11 weeks or more?
Given the fact that your mother has surpassed the doctors' expectations, it would be a good idea to re-evaluate your role--and the roles of your other family members--in her care. I think you are wise to be alert to the potential for exhaustion and resentment which can arise from the requirements of extended care. The following are suggestions of things you may want to consider:
- Hold a family council--with as many family members as possible, even if it has to be done by conference call--to re-evaluate what can and should be done for your mother by her family. The fact that she has lived longer than expected provides a nice opportunity for everyone in the family to reconsider what they can do at this point--regardless what they may or may not have been able to do up to now. Be prepared to discuss the types of care and support needed. Generally speaking there are two kinds of support: direct and indirect.
- Direct care includes the following:
- caring for your mother's ongoing physical welfare
- maintaining her surroundings (laundry, vacuuming, etc.)
- Indirect care includes the following:
- financial support (making sure bills are paid, etc.)
- addressing paperwork/legal issues (insurance/medicare, details regarding her estate, etc.)
- interacting and coordinating with her medical team
- providing support and care for the family members providing direct care (taking their kids to piano lessons, bringing in a meal, babysitting, etc.)
- Re-consider getting back on the list for a spot in a long-term care facility.
- Create a system of ongoing communication in the family (this is another example of indirect care which could be administered by a family member living far away) to provide updates on your mother's condition as well as upcoming needs. Social media such as a blog, Facebook, or Twitter might be useful to you. If electronic media won't work, consider a brief letter that is copied and sent weekly to each family.
The keys to dealing with this difficult situation are coordination and communication. The original plan for you and your family was based on your mother living 2-4 weeks. Now that she has surpassed that expectation, you must make a new plan which includes a re-evaluation of the commitments made by everyone in the family and gives each family member an opportunity to adjust their level of involvement according to their circumstances.
Tonia Klemetson writes:
In short my Grandmother was diagnosed with bile duct Cancer "officially" on the 13th. We had a strong suspicion on the 3rd when her coloring turned yellow but hung onto hope that maybe it wasn't. She had the bypass surgery on the 13th and the Cancer was found in her lymph nodes and at the head of the pancreas.
My grandmother and I are very close. I'm very lucky to have the relationship I do with her. I always knew that in time she wouldn't be there but for some reason I was still shocked when I was told.
I've been around to help with a lot of things since we found out. For various reasons my aunts and uncles have not. My Mother lives a ways away and can't be here all the time. Because of this I've been around for the meetings with the doctors and getting the paperwork figured out and seeing what she needs. I really do consider this an honor.
However, since the 13th family issues have surfaced that are causing stress in an already stressful time. My Grandmother has opted not to seek treatment for a variety of health reasons. One of her children is begging her too and is trying to get me to do the same. The numbers for her situation are amazingly low for success on any level. She's told me again and again she's ready to go. I can't push her on this. I feel its her choice.
I feel guilty because of my frustrations with the situation. I love my family but this is not the time to be figuring out who was "loved more" or who always felt they were the "black sheep" and who got the better christmas gifts. I could be wrong, maybe it is....
I just want them to be kind to her. She's tired and scared. I want them to be kind to each other too. She held us together and we're going to have to start doing that on our own soon.
I feel bad writing this but I don't know where to go. One moment I'm "ok" and the nest I'm an emotional mess that's angry and scared. I'm 28 and married ( no kids yet) and feel bad for my poor husband and my mood swings.
Is ANY of this normal?
Thanks for reading the looooong post.
Your "mood swings" are absolutely normal. Relative to the rest of your family, you are in a unique position. You have a "ringside" seat to your grandmother's current life and circumstances. You know how she is doing and how she feels about her situation. Given your responsibilities, you have, to your credit, remained focused on your grandmother's thoughts and feelings rather than on your own. I'm guessing that the mood swings come from the shift, back and forth, which occurs when you finally have time to contemplate your own feelings. Your grandmother is fortunate to have such a mature and conscientious person as a buffer to the rest of the family. I hope you can continue with this role for as long as you are needed.
At the same time, however, it is important to spend some time on your own feelings. You have grieving and mourning to do which is a good and necessary part of saying goodbye to your grandmother. Write down your thoughts, talk about them with your husband and/or a few close friends. Talk with a therapist. Consider sharing them with your grandmother. She may be in a unique position to help you back.
Jean Stenerson writes:
I am a healthy 44 year old female with two great sons ages 13 and 22. I had liver resection surgery with Dr Stuart Knechtle at UW Madison, WI in April 2008 due to a large tumor on my liver. Path reports stated it was contained to the liver, no lymph node involvement, no vascular invasion and the doc said he "got it all" with a 1 cm border...which I am told is very large and harldy heard of. I am in the process of going for me 3 month check ups. I went to my second one (6 month) yesterday and am now scared to death. My bloodwork and liver function tests were normal but they noticed a very small dot on the remaining part of my liver. The dot is the size of a BB and too small to biopsy so they suggest I come back in 5 weeks for a repeat CT to see if it has grown, etc. I feel great, not tired, not losing weight, no pain. I thought that this was behind me and I had the rest of my life to live healthy. Looking forward to seeing my children grow up and becoming a grandmother some day. Today I am so down I can hardly function. I am at work right now by the way. The doctor says it could be a glitch on the CT, a benign cyst or something or the dreaded C word. I am trying to be positive but am having trouble in doing so. Many people tell me that a positive attitude is what beats this thing. My realistic side is interferring. Any words of advice would be great. Dr Knechtle has since left UW Madison and is at Emory in Georgia. What do you think the chances are that this is "nothing" to worry about? Also, if it is back, what are my options and do they just prolong life or is there a reasonable chance that I could actually ever be CURED of this? I am told doctors could "zap" the spot if indeed it is cancer. I would appreciate a response today as I sit here on pins and needles.
You are experiencing what most cancer patients go through at one point or another: the idea that, when it comes to cancer, there is no finish line. We are never completely free to consider life without the threat of the cancer returning. This can, at first glance, be a very depressing idea. We may ask ourselves (and others) questions such as these:
We're never going to be free from the threat of the cancer returning?! Then why should we even go though all this treatment and diet and worry and drama? What's the point? Where's the cure?
As humans, we don't do very well with the unknown. We like guarantees and formulas and maps. We build technology which allows us to peer into own bodies to observe its functioning or to see our world--and even our own rooftop--from space. We explore the unknown until it isn't unknown anymore. It's just our nature. So, not knowing what's going to happen with this cursed cancer can be frightening and/or emotionally draining--if we allow it to be.
The key to preventing our lives from being overwhelmed by the unknown is to focus on what we do know. You have two great sons. Your relationship with them, what you say to them, how you treat them, is completely within your control. There is little unknown about how you feel about them. I would suggest you focus on that. Concentrate your energies and attention on this and the other things over which you have the most influence, and spend very little time on those questions which cannot be answered. Do what you can to make the unknown known, but be careful about getting lost in the unanswerable questions. It's a difficult thing to do because we don't like the unknown so we tend to ruminate about it.
But I promise you that if you will turn your attention to that which is clearly known to you and about which you can do something about, you will have less time to worry about the things you can't control; and you will have more fulfillment and experience more peace--even in uncertain times. I'm reminded of part of the Serenity Prayer from Alcoholics Anonymous:
God grant me the serenity
To accept the things I cannot change;
Courage to change the things I can;
And wisdom to know the difference
May you have serenity, courage, and wisdom as you face these uncertain times.
Belinda Rankin writes:
My mother was going to her doctor for two years she was telling her how bad her stomache hurt, she lost 18lbs could hardly eat the pain was so bad, this christmas she blacked out and couldnt breath,at the hospital they found 15 tumors in her liver and told her she had cancer, maybe 2-8months to live I am so mad at her doctor for not doing anything for her sooner, how could you miss something as all those tumors you could feel them, my mom doctor for two years told her there was nothing there but gave her pain medince and sent her home. me and my brothers and sisters are so angry, she is my best friend
I'm so sorry to hear about your mother's illness. It is a shock to find out a loved one has a serious disease--and scary when that loved one is your best friend. It is normal to look for something--or someone--to blame. It's part of how we attempt to regain control of a situation that feels out of control: we look for reasons and answers. Be careful, however, about spending too much time on the anger toward the doctor. Some of your brothers and sisters may choose to dwell on the anger they feel, but I hope you do not. The anger will not help you feel better. Reaching out to your mother, caring for her, and making good memories together will be what helps you feel better. Your heart and mind will have more peace if you focus on what can be done now rather than on what should have been done in the past.
Please know that all of us here at the Cholangioncarcinoma Foundation will be pulling for you and your family.
Jeff Gerrish writes:
Do you think it would be appropriate for me to do like a motivational audio or video for my wife,that she could listen or watch after my demise. My thought is when she feels really down and out and needs reassurance and some motivation woud it be a good thing or would it be something that would prolong her grief. My duaghter is already putting toghter a memorial audio/slide show from my baby years until now. This separate recording between her and I , would it really be of any help or make things more emotional for her to get through the tuff times of grieving. The recording would be loving and up beat and motivational that she'll make the right decisions. I guess I want to still be here in some way giving her support and letting her know she isn't abondoned in some way. Thank You Very Much! If any other spouses are out there and read this feel free to pop in under general discussion of your thoughts. Thanks again!
I think your idea about a video is absolutely brilliant! Of course it will make your wife and family cry and miss you, but is that really a bad thing? I believe that's part of loving relationships: we sometimes long for those who are gone. But besides crying and missing you, they will also be comforted by your face and your voice. Often those left behind worry that they will forget their loved one--that they will forget what they looked like or how their voice sounded. With your video, they can remember. Plus, you can emphasize to them the things you want them most to remember about you and about their relationship with you and about your wishes for them for the future. I think that for your wife to see you laugh or smile or say an encouraging word directly to her after you're gone may be better than all the grief therapy in the world. I definitely think you should go forward with this project.
I'm feeling guilty about retiring early due to health reasons. I don't feel *that* bad, but I'm finding it difficult to keep juggling work, family and health issues. I'm only 46, a single parent, and still supporting my 3 kids. By cutting all my expenses to the bone, I think we can make it, but I feel lazy and guilty for wanting to stop working.
It's normal to worry about our choices when they seem to be different from those around us. We wonder if we're doing the right thing because nobody else is making the same choice. The truth is, however, it may be there are few people who are in a situation similar to yours: single parent of three children with health problems who has the choice to retire. I'm assuming you have some specific reasons for choosing to retire (I'm also assuming the decision has been made, right?). If it is true that you have already retired, then I would suggest looking forward rather than backward. Recall the reasons you chose to retire and follow through with them. Decide today to make your choice work out. That is, given that the choice has been made and your circumstances are set, do everything you can to give it the best chance to become the best decision you ever made. I'm excited for you. Robert Frost said, "Freedom lies in being bold." Don't be afraid to make a bold choice. It just may set you free.
Dear Dr. Giles, first of all, i am so sorry for the loss of your best friend. I am a 14years old boy and my mom passed away of cc. in July 08 at 40yrs old. everything was so sudden, 2 months before she was fine and active with just a little stomach pain, and who knows it turned out to be such a disease. the doctor said maybe half a year but she is gone after 1 and half months after barely any treatments done and sent to a hospice(i know that nothing else can be done but it is just so sad watching her dying everyday while feeling helpless and also cant stand the hospital's stupid policies that delays everything). now almost half a year later, even though some time has passed and i been to the school's counseling center for help, i still feels lonely, always sad and does horrible in high school since i cant focus in class lectures and always procrastinate on my homework. Do you have any tips or suggestions for someone like me to recover faster and can focus when doing things again?
Thank you for your kind words about my friend. It's been just a little over two years since he passed away. I still think about him often--especially when I see someone who looks like him or I do something we used to do together. I wonder what he would think of my life--especially since I'm doing, without him, some of the things we talked about doing together. I miss him, as I'm sure you miss your dear mother, and I imagine what he might say to me in certain situations. It helps me see things more clearly when I do that, and it motivates me sometimes.
Do you ever imagine what your mother might say to you about your life today? What would she want your priorities to be? What would she want you to become? It may be that you can use these questions to help you focus your attention and energy. Keep her in rememberance, Eric, and let her memory comfort you and guide you. I'm guessing she would want you to be happy and productive in your life. Make choices that will honor her and what she taught you. If you do this, I think your mother will not feel so far away.
Please write me again and tell me how things are going. I wish you much success.
My husband & I have been married 7 years and he has 5 grown kids (27-36 yrs old) from a previous marriage. Recently, after being diagnosed (8/07) with cholangiocarcinoma we retired & moved to from NJ where all his kids live to our "dream" island of Hilton Head, SC. My husband is now quite ill with the disease. His kids call him often to "chat" but do not take any interest or concern in his condition. They think meditation, positive thinking, accupuncture etc. will help him. And, most distressfully they have not come down to see him since we moved here 6/08. They all love him very much but are yuppies and very much into their own lives. I am so angry as I see what my husband is going through 24/7. My husband is not one to "have words" with his kids. I realize they either "don't get it" or don't care "to get it". When I mention to them, only occasionally through e-mail how poorly their Dad is doing, I get no response. What position/roll should I take with them? Thank you.
This is a common situation for people who are close to someone with cancer: they are keenly aware of the suffering of the loved one, but they are also keenly aware that others don't "get it." That is, others aren't recognizing, acknowledging, or responding to the reality of the struggle for the one who has cancer.
Sometimes others don't recognize, acknowledge, or respond because they feel powerless to help. They don't know how to cure cancer and don't have medical expertise so they feel there is nothing they can do to help. What they don't realize is that their simple acknowledgment and expression of concern is the most important thing they can do. People with cancer don't need more doctors, they need more friends!
Sometimes others don't recognize, acknowledge, or respond because they don't know how to deal with the uncertainty of the situation: is he going to get worse or better? Do we talk about the possibility that he might die, or do should we refuse to even consider that outcome? Do I treat him like he's dying or like he's going to live to be 100 years old?
Sometimes others don't recognize, acknowledge, or respond because they don't know how to deal with their own feelings of loss. As you know, it takes energy to deal with loss and they may be waiting for the "right time" to deal with their father's serious illness and the fact that he may die from it.
In any case, a good first step is to share your observations of the situation with your children--perhaps beginning with the child who you think will be most open to this kind of discussion. Share with him or her your observation that there appears to be little response from the children about their father's illness. Share your speculation--in the most understanding and diplomatic way--about why this may be so, and then ask for your child's thoughts. After your child has shared his or her thoughts, describe the emotional impact of your children's approach to their father's illness. Tell him or her how you and your husband are feeling as a result of how the children are handling their father's illness (e.g., overlooked, neglected, etc.). Ask your child what they think you should do next to make the rest of the family aware of the problem.
The most important thing to do is to begin engage your children in ongoing dialogue about the situation on two levels--the level of the specifics of their father's health, but also on the level of the dynamics of a family who is dealing with a potential loss. Asking questions which prompt discussion and spending most of the time listening will probably be the best approach for you to take.
My husband died 1 week and 1 day ago. We fought this cancer for 3 long years.
How do I go on? My soul is dead. All I feel is agony every waking moment. I don't know how to verbalize what is happening to me. My family just tells me to be strong, it takes time. My sister said you seem to be doing better today. I told her I was the same, just hiding it better. I've found out no one wants to hear that I want my husband back, that i'm lost and confused without him, that my heart is broken and that I wish I was dead so I will be with him again.
I know I have to live to be able to see him when my time does come but I'm hurting so much.
please help me stop hurting.
This must have been a terribly difficult time for you--particularly through the holidays! Grief is like a river of fire which burns as it flows. We sometimes feel as if we want to protect ourselves from the heat so we try to block the river. Sometimes we are OK with the heat but others can't bear to see us struggle, so they attempt to block the river for us. The truth is, it is important to allow that river to run its course. That is the only way to heal from the loss. We are meant to grieve the loss of those who were important to us--to celebrate our relationship with them and mourn the void which has been created by their passing.
We allow that river of fire to flow by talking about how we feel. Your feelings of agony, confusion, and heartbreak are normal and understandable. Sometimes we have close friends or family members who can sit with us as we process these significant feelings. Sometimes our grief is greater than the capacity of those around us to deal with it. Under these circumstances, a good alternative is to find a competent therapist who can help us through the grieving process.
A good place to start in your search for a therapist is to talk with those you know who have been to counseling. Ask them about their experience and whether they think their therapist might be a good match for you and your grief. If you have mental health coverage with your medical insurance, call your insurance company and ask how to access your mental health benefits. They may have a list of therapist from which you must choose--and there might be a preauthorization process before they will pay for your counseling. Most therapist are happy to speak briefly with potential clients over the phone to explain their services and answer questions so the potential client can decide how they want to proceed.
Please do not wait any longer to seek counseling. Grieving is difficult enough without having to do it all by yourself.
Our family is meeting with Hospice and trying to get things in order for Charlie as there are no more medical interventions to try. He is jaundiced, not eating and weak. My question is about our son Ben, age 17. He is having a great deal of trouble sleeping. Do you think asking Hospice about counseling for him is the right way to go? Ben said he thought he could do it so he's open to that. Our daughter Sarah, age 20 hasn't mentioned it. My heart just breaks for them. I lost my Mom when I was 17 and it is very hard. Even though they're not children, they don't really have all the skills of coping or working things out. Do you think Hospice is a good place to start? Thank you.
My heart goes out to your family. I think it is very good that you are keeping track of how your children are dealing with this emotional time. Seventeen year-old boys are not known for their emotional insight, so the fact that your son is open to counseling--and recognizes that there might be a need for that--is impressive and a testament to your good parenting. I would definitely ask hospice about counseling for Ben and I would also offer counseling to your daughter. If Sarah is ready for that, she will accept the invitation as Ben has. If she is not, then you can offer again later--but be prepared for the possibility that she might not be ready for a long time. As you may have already discovered, each child deals with loss differently. The challenge as a parent is to be aware and sensitive to those differences and be ready to help when they are ready to receive the help. The timeline for grieving is different for each of us and it's best if all can respect--and be patient--with those differences.
My husband passed away from Cholangiocarcinoma after only 7 short weeks. He was not even definitively diagnoised until 1 week before he died. At that time he was given 6 months without any treatment. A week later we were told he only had a short time left, possibly up to a month. He passed away the next morning 9/2/08 at 8:55AM at the age of 62. This all happened so quickly. Up until then he was healthy with just a few aches & pains. Needless to say I was totally in shock at first. I had been planning to take him home & into hospice care. It was a stress filled 2 months & then there was nothing. I am now feeling that I was robbed of so much. There was so much left unsaid & undone. I am tormented by this wondering what I could have or should have done differently I have so many regrets, even thought I know that I had no control over this & it is really no ones fault except this terrible disease. We have know each other since I was 15 & were married 41 years & together almost all of the time. Needless to say this has left a hugh void in my life. I just don't know how to deal with the what if's & that fact that I feel there was no real closure. We didn't even have a chance to say that last goodbye. How do I start to deal with all of this & will it ever get any better?
Darla, I am so sorry to hear of your husband's passing. By my math, it appears that two-thirds of your life was spent in association with him as your friend and husband. How wonderful!
The void created by his loss--whether sudden or predicted--must certainly be, as you say, huge. There is mixed opinion among my clients and other associates whether it is better to lose a loved one gradually or suddenly, and I am still undecided about it. What is clear to me, however, is that losing a loved one suddenly results in fairly consistent experiences for those left behind.
With sudden loss, those left behind experience a sense of lost control. The loss of the loved one occurred against their wishes and with little time to prepare. As a result, those left behind can conclude that they are very vulnerable in a treacherous world which is fraught with danger. To combat against those very uncomfortable feelings of not having much control over our circumstances, sometimes we spend time reflecting on what we (or others) could have done to create a different outcome. Your struggles, Darla, with the "what if's" are an example of this: "what if I would have insisted that he see a doctor sooner," or "what if we had gotten a second opinion," or "what if I would have stayed up longer with him the night before he died," etc. These thoughts are an attempt to regain a sense of control over heartbreaking circumstances, but ultimately it is not a very useful way to think.
The pain and ache of his loss is something you need not fear nor attempt to avoid. Those feelings are normal and a testament to how much he (and your relationship to him) meant to you. There is a sweetness in that sorrow which is good for us to experience. It can be cleansing to our heart and mind. He certainly will be dearly missed by you and others. While currently his absence dominates your thoughts and feelings, there will come a day in the near future when they will loom less large and, like the sun breaking through the clouds, the forty-plus years you spent with him will shine through with satisfying and comforting memories.
True closure will come as you rediscover the overall satisfaction you had in your life with your husband. It wasn't as long as you would have liked, but I expect you will eventually conclude that the quality, rather than the quantity, was what truly mattered. By your brief description of your relationship with him, I suspect he knew that you loved him. I also suspect he loved you a great deal, too.
Give yourself some time to grieve, Darla. Share your grieving experiences with those who can listen and be supportive--those who can handle that fact that it's going to take some time before you are 100% again. Go easy on yourself and be kind to yourself. If you can be patient with your grieving and honor the feelings you have, you may find grieving for your husband to be a healing and fulfilling experience.
I will be 3 yrs post radiation treatment in November. I was told that I had a 40% chance of living 5yrs. My husband and family are thrilled that I have been doing so well but the longer it is the more terrified I get. I feel like time is running out, I don't know why I feel this way but its getting to the point where I now dream about it and wake up scared to death in the am. My husband thinks I'm crazy why is this happening now?
I'm so happy that you are doing so well! It sounds as if the odds your doctor gave you at the end of your treatment regimen really made an impact on you. It would be interesting to ask your doctor now, nearly three years later, what are the odds of making it the full five years and beyond. I would guess they would be significantly increased from 40%.
Speaking of which, is it possible that the phrase "five years" has come to represent some sort of finish line for you? Perhaps that finish line, rather than a line painted across the road, feels more like a thick stone wall--a stone wall which you are rapidly approaching! I ask this because you mentioned feeling "like time is running out" and waking up "scared to death." It sounds like maybe your brain latched onto the idea of "five years" initially out of hope that you would live that long. Now, with the majority of that five years behind you, the time remaining of that initial five years doesn't seem very long. It may be time to let go of the "five years" approach to life. That's for prisoners on death row, not for healthy people like you. Here are a couple of tips to get back to thinking like a healthy person:
- Invest in your future. Plant a few saplings and plan to seem them become full-grown trees, go back to school, develop a talent, etc.
- Drop "if I'm still alive" from your thoughts and conversations. Any of us could die tomorrow--or live to be 100.
- Begin to make plans for 2011 and beyond.
- Encourage your loved ones to take these same steps.
You have had the rare privilege to know first-hand how tenuous life and health can be. It's time to go back to enjoying what you have. Oh, and pick up some new sunglasses. Your future looks bright to me!
It seems like you are struggling with a very common difficulty for those who are faced with life-threatening medical conditions. The medical community, in an effort to inform us and give us an accurate sense of what we're up against, has tried to characterize our chance for survival by using statistics--namely percentages. What the doctors don't tell us, however, is that those initial odds of survival improve the longer we live.
OK. Let's talk statistics for a moment. Apparently, your doctor quoted research that has found that out of any 100 patients with your condition completing radiation treatment, 40 will live five more years. The other 60 will not live that long. Therefore, your odds are 40 out of 100 (or 40%) that you will be one of those who lives five more years. These statistics give you less than a 50/50 chance of living five more years. Not great odds, right? But that's just the beginning.
The longer you live, the better your chances become of making five years and beyond! If we assume an even attrition of the 60% who won't live five years, then if you survive one year, your chances of surviving for the full five years or more go from 40 out of 100 to 40 out of 88, or 46%. For each year you survive, your odds go up. After three years, your odds of making it to five years have increased from 40% to 63%.
It sounds like what has happened is that you have wondered, from the beginning, to what group you belong. Are you in the 40% who lives 5 years or the 60% who don't? Now, 3-plus years later, you are still wondering, "Am I about to find out I'm in the 60% group? Have I been hoping for survival when I'm destined to discover that I was in the 60% group all along?"
The problem with the statistic that your doctor dropped on you after your radiation treatment is that it does not reflect that, statistically, your odds of survival improve for every day you live after radiation.
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.
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.
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.
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.
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.
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:
- 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.).
- Knowing that death is coming gives us time to take inventory of the life we have lead and celebrate what it has been.
- Knowing that death is coming allows us to discuss how and for what we want to be remembered.
- 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.
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:
- 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.
- 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.
- 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.
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?
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:
- How do I feel about my illness?
- How do I feel about death?
- How do I feel about the prospect of dying from this illness?
- What do I want these children to remember about my attitude towards dying from this illness?
- 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."