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Decision to end treatment: Stage iv bowel cancer 
Créé par Charneypam
27 déc. 2011, 21 h 09

Hi - I am new to this forum.  I am feeling very overwhelmed since a close relative was diagnosed with bowel cancer that has spread to her lungs and liver.  She has chosen not have have treatment as she is in her 70s and wants to maintain a quality of life.  Up until lately she has been doing well but her pain is getting worse (although she won't take anything except T3s) and she is now experiencing nausea, tiredness and lack of appetite.  She doesn't want to know how long she may have.  She is becoming depressed and refuses to tell the doctors the extent of her symptoms as she doesn't want them to push more drugs on her (her words).  She is angry when people don't call, angry when they do and it's not convenient to her, angry when they don't visit, angry when they do and ask too many questions, etc.  I am very close to her and see her daily - I am feeling extremely helpless as I want her to be happy for what time she has left but nothing I do seems to help.  Has anyone else ever experienced a similar situation?  I have no experience with this type of cancer or what to expect - any suggestions or sharing would be appreciated.
 
28 déc. 2011, 17 h 28

Welcome Charneypam. I'm glad you found us.

While you are naturally feeling overwhelmed and helpless, I am confident you are doing many things that are helping your relative. Here is a brief article about What can be expected with colon cancer that has spread to the lungs and liver? 

 You may also want to share these 2 articles with people who wish to visit:

I look forward to reading what others have to share with you as well. What suggestions would you offer Charneypam?

 

Colleen
 
Réponse de Tian
28 déc. 2011, 18 h 17

Hi Charneypam.

I sympathize very much with your situation. It sounds like both you and your relative have a lot to process. It seems to me that she needs to realize that there is a difference between treatment to extend her life and treatment to ease her symptoms. It's impossible for her to have a good quality of life with the symptoms she is experiencing and doctors can address that without pushing anything on her. The doctors will honor her refusal to accept life-extending treatment and their overriding objective will be to keep her as comfortable as possible. Her anger is being compounded by her symptoms and there is no need to wait for them to become unbearable for them to be addressed.

Tian
 
Réponse de Charneypam
28 déc. 2011, 23 h 49

Thank you very much Colleen and Tian for your replies.  I will definitely check out the links/articles you suggested Colleen. 

Tian - you hit the nail on the head with many of your statements about my aunt's misconception about treatments - I think since she lives alone she is afraid to try anything new for fear of how she will react.  She is a very independent woman and has been on her own since the death of her husband about 15 years ago.  I think part of the reason she isn't telling the doctors how she is feeling is that she is afraid of what they may tell her.  I truly feel that her disease is progressing as her good days are now out-numbered by her bad days - she has not been out of the house in four days because she hasn't had the energy to go out as well as the fact that she is having more pain and nausea - her appetite has decreased and very few foods appeal to her - she told me today that she very rarely gets hungry.   She has a wonderful palliative care doctor however I wish she actually knew what was going on so she could help my aunt, but I am abiding by my aunt's wishes and not saying anything at the appointments.   Thank you so much for the replies any support and information is truly appreciated.

 
 
Réponse de Plum1
29 déc. 2011, 15 h 38

Dear Charneypam,

I too  feel very much your pain and sense of helplessness. It is so difficult to be present to the suffering of one you love. Your relative is suffering physically but also emotionally. You mention that she seems to be getting depressed, and I sense that that is the case. Her fears are stong and real. And she is very much missing her husband who was most likely also her best friend. In the midst of this emotion, it is difficult for her to make wise and healthy decisions for her well-being.

I am sure you are showing her much compassion and love. Just reflecting back to her the feelings she has may help her to speak a bit more about them. The fact that she expresses a desire to have quality of life might be something to talk more about with her. What does she imagine as good quality of life? And how can she imagine nurturing that?  I wonder what she would say if you asked her what her husband would want for her now? What her husband would be saying to her? Perhaps he would encourage her to talk more openly to her doctor who is there to help all she can.

I also wonder whether your relative would be open to talking to someone else living with the same cancer as herself. This might help her not to feel so alone. And she might be more open to hearing about possible treatment from such a person.

Just my thoughts at this point. How do they strike you? You are the one who is close to your relative, and know her well.  In the meantime, know that I am with you in spirit and care.

Plum1
 
Réponse de Charneypam
30 déc. 2011, 1 h 27

Thank you so much Plum1 for your reply and for your suggestions - you definitely have given me something to think about.  I am going to try and delve a little deeper into my aunt's feelings and reassure her that she is not alone.  I am trying not to take her moods personally but since I see her everyday it sometimes can be difficult.
 
Réponse de Tian
30 déc. 2011, 12 h 48

Dear Charneypam

To Plum's words of wisdom I would add that you should contact your Aunt's palliative care doctor in private. Your Aunt is fortunate to have her and you should take advantage of her knowledge and compassion.  I don't think you should feel guilty for contacting her  because with your Aunt's extreme physical and psychological stress she is not acting in her own best interest. The palliative care doctor is in the best position to know how your Aunt's prognosis will play out and how to keep her as comfortable as possible. Have the doctor provided with all the information and tell her that your Aunt is afraid of finding out about her situation so the doctor will act accordingly. And of course the doctor will do what is necessary so your Aunt won't be upset that you approached her. Are there other family members that you can discuss the situation with?

Tian
 
03 janv. 2012, 13 h 13

Hi,

Plum1 and Charneypam: It looks like both of you lost a post. If this is true, can you please let me know the details of the problem on the Feedback thread in the Moderator's corner. 

Also a new member Colleen61 has just started a new thread My dear brother. I know you'll make her feel welcome here.

Colleen
 
03 janv. 2012, 13 h 14

My apologies. The link functionality isn't working. I have reported the problem and we should have it fixed asap. Colleen

PS: The link issue has been fixed. Please let me know if you find any broken links. Thank you for your patience. Colleen
 
Réponse de Cath1
10 janv. 2012, 19 h 44

Hi Charneypam:

I read your post and I just want you to know that you are not alone! Many people are dealing with similar circumstances with a loved one and I hope you will take some time to reflect on your own needs, your own fears and frustrations, as you compassionately support your aunt in her situation.

It is important to forgive yourself for the things you cannot do for your aunt such as lift the burden of her disease and her prognosis from her, nor can you change how she is reacting to the devastating news. I'm sure you would if you could change the circumstances your aunt finds herself in, and I'm even more certain that underneath the dark moods your aunt is feeling and the dissatisfaction she is expressing, there is a very grateful woman who knows you are there for her, loving her, consoling her and helping her to come to terms with her illness and to face it with as much human kindness surrounding her as is possible. You are such an honourable and loving person!

I recall when my own mother was living there were many times I felt deeply hurt and took her words and moods and behaviours to heart. I struggled to remain emotionally detached at times, to look at her situation from a logical place, to not take her words and actions personally, but it was never easy nor was it in every situation possible. I remember feeling very unappreciated at times because I was there for my Mom in every moment to help ensure that her needs were fulfilled while I often overlooked my own. She often resented me for the same reason which simply amplified that her need for dependency upon me and others and this state was not natural for her, as like your aunt, she revelled in her independence. Conflicting needs are a fact in situations like you and your aunt's and my Mom's and mine and all involved are in a touchy emotional zone.

My children were wonderfully supportive of both my Mom and I, and when I felt the need for a safe place to feel understood they encouraged me to vent to them, as did close friends when I felt really overwhelmed. Looking back I wish we had each taken advantage of the support systems surrounding us a little more often. My Mom had only me to vent her feelings with, as she was private by nature, and with dementia confused. I think it must have been so hard for her to have all these new feelings to deal with, many of which were neither pretty nor comforting, and with so few opportunities and people with whom she could feel comfortable to unburden herself. It's important to work on maintaining perspective because the person suffering, needy and vulnerable, does not always realize how demanding they can be and we often indulge them at our own expense. It is human to feel sad and even angry at times with a person we cherish as they go through a difficult journey toward the end of life.

My mother had a mental illness all throughout my life and in her last few years she had developed dementia. Both conditions at times caused her to behave in a very self-centred manner and seemingly oblivious to the needs of others, especially those closest to her, which was at times for me a trial to bear. Still, I always knew the reason behind my Mom's challenging moods and attitudes and I imagine for her it was sheer hell not being able to communicate clearly as her life approached its finality. It was heartbreaking for me to witness and indeed experience with her, her own mourning for the many losses she was experiencing, the betrayal of her own mind, her fading independence and ability to express her deepest thoughts and emotions.

When a loved one is seriously ill, the caregiver(s) may feel they are going through it themselves and it is hard to maintain rational perspective in every moment when the situation is so volatile and emotionally charged for the person facing death and those who love them so much. The person's very life is at stake and we all react to such news in a highly personal way.

I hope you are finding great support here in the Virtual Hospice forum and I feel so glad that you possess the wisdom and insight to reach out to others. Not everyone can or will and that's unfortunate because as we seek help we find strength and then we pass it along to and through others.

I also think that your aunt has a right to decline or accept treatment, the nature and flow of the information about her illness, her medications and how little or how much information she wants to know and how she wants to deal with it. I am certainly no expert on matters of death and dying, but reading your posts I get the impression that your aunt is in a stage of denial and perhaps she is experiencing an inner conflict with her own denial which produces feelings of anger. On the one hand she doesn't want to or is unable in the moment to accept her situation, yet her logical mind seems to be processing the information despite her denial and that may be causing her to feel angry. She may be feeling as if no one else really understands how shocking this news is to her, even though I'm sure you and others are sensitive to this fact. The truth is a hard pill to swallow and it is like a psychological terror to be aware that your days are numbered and there is not a thing you can do about it. I know I would not have an easy time adjusting to news of a terminal illness. If my instincts are correct, your aunt may stay in these difficult stages for a while until she is able to arrive at a place where she can accept her situation, in her own time. You may have to come to accept that she is not able to approach her situation as you would, and I know for me that is always hard because I am a natural at projecting!:)

Personally, I would not risk alienating your aunt by discussing her situation with her doctor without her permission if she is of sound mind because that I feel is her decision unless she is incapable of making decisions for herself. Sometimes it is the hardest thing to do to watch helplessly as loved ones make decisions that we disagree with, but they have the right to direct their own course despite our best intentions for them.

Psychologically, your aunt may simply be feeling too fragile and physically too exhausted to approach her doctor with her actual symptoms and fears because the anxiety may feel overwhelming. She may not even be at the point where she could say the words out loud as that would confirm for her that what is happening is a reality that she cannot avoid.

I would suggest that you risk being vulnerable with her, show her your true feelings, sensitively share with her your concerns for her and take this opportunity to reassure her that you have only her best interests at heart and that you have no intention of deserting her in her hour of need. Ask her how she would feel if the tables were turned and if you were reaching out to her in the same circumstance and ask her what she would do for you. Have intimate conversations with her and see if she will open up and allow herself to become a little less independent and trusting with you as you want to help increase her ability to cope.

Your story reminded me of a moment I had with my Mom before she went into a nursing home in mid 2010. It was a spring day and my Mom had been at the hospital for a number of weeks and every weekend I would bring her home to stay with me. I have a very tiny place and there is not much room to roam around. She was in a very dark mood and was demanding and ill-tempered and suddenly I began to sob and as I sobbed, I expressed many of my pent up feelings and surprisingly she responded appropriately and she too began to cry and apologize. When I saw my Mom in tears it pained me beyond words as my mother rarely cried. She had a lot of pride and did not often reveal her vulnerabilities even in my presence in that way. I felt immediately like a big jerk, because here I was all hale and healthy and there she was across from me on the couch, fragile, elderly and with dementia no less! My gut reaction was guilt which magically evaporated once we began to express to one another the honesty of our feelings and how important we were to the other and how deeply the other was loved. We held one another and ended up laughing and comforting each other and I always look back on that time as a very healing experience between mother and daughter.

There seems to be a tendency among some caregivers to behave as martyrs and that is something that has always put me off the description. Caring for someone you love truly is at times a thankless effort, a true challenge and it cannot be idealized. It is demanding work, although often a labour of love, it demands that both the person being cared for and about and the person doing the caring each be as self-accepting and resilient and hopeful and adaptable as possible in order to make the best of it. The biggest thing for me was realizing that there were times I did let my mother down and there were times I wish I could have been stronger for her sake, but overall, I am confident that I did well by my Mom, that I did my very best for her in each instance, and that truth though not perfect is and must be good enough. My Mom taught me well to love my imperfections and hers and now I cherish the imperfection within us all much more than anything ideal.

I hope that your aunt comes to accept her situation and your loving help. No matter how it all turns out in the end, it is the effort that you are making for her that speaks beautifully of the love you have in your heart for her and I just know you are making all the difference in the universe to her.

All the best to you both!:)


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