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Husband is dying 
Started by Caron
31 Mar 2012, 3:57 PM

So glad to have finally found a place were I can express some of the issues that I am dealing with, and there will be people who understand.  I am the one and only caregiver for my husband who has extensive small cell lung cancer.  We have been told that he will not be here in six months, so I am trying to make his life as good as possible in that time.  However, there are increasing demands coming from family ( adult children ) that I somehow rescue him from this terrible cancer and make him well.  Traditional cancer treatments have been stopped by his doctors because chemo was not working - so now my son wants him on Vitamin C treatments and a cancer diet ( very strict diet ).  I am trying my best, but the strain of it all gets to me sometimes- with the travel to and from treatments.  And I have been told to be positive and not cry or be sad ... so I put on a front as best I can.  I know that my son want the best for his dad and is trying to help, but I think that he has forgotten that his mother is suffering as well, from watching her husband die a little each day.   


Any suggestions on how to handle all of this would be appreciated
   
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Reply by Cath1
31 Mar 2012, 4:45 PM

Dear Caron:

Your heartbreak is palpable! Welcome to Virtual Hospice and I am glad you trust that we will understand your feelings and that you are doing the right thing by seeking a safe and supportive place to express your real feelings. You will not be judged here.

I have adult children too and I know from experience when emotion and worry come into play within families - especially in times of crisis - how they each and all have an opinion. Some of my children are laid back and accepting by nature, but others are more intense as am I and in need of feeling some control. Those who feel threatened when circumstances present them with little to no control almost instinctively try to overcompensate to create it.

You are so wise as your son's mother to understand your son's motivations, but I feel for you as your needs are being inadvertently overlooked by way of his reaction and suggestions. Please don't feel that you should follow anyone else's advice and direction to appease their fears. You are amazing in your ability to accept your husband's illness and all that it means.

Please write more and I know others with more direct experience with situations such as yours will respond to you as well. Cry if you feel the need. It is not your responsibility to shield others from your painful emotions nor can you possibly do anything to change your husband's health or prevent those you love, your kids, from having to accept that the future may not be as long as they wish it could be with their Dad.

I agree that your husband's life now should be all about comfort - his comfort - and yours as you tend to his daily needs. It is heartbreaking for you to see your kids panicky about the prospect of losing their much loved Dad, but they are adults and you must expect and allow them to find their own ways to cope with anticipatory grief you are all experiencing. Please if you can, speak to them and ask them to support you in the way you need as you are so well supporting your husband and their Dad.

You Caron, and your husband and all your family will remain in my prayers and my heart. Hang in there with us as we are here for you!:)

Cath1

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Reply by Tian
02 Apr 2012, 5:15 AM

Dear Caron



I agree with Cath1 and think you are absolutely correct in trying to make your husband's life as good as possible in the time he has left. Unfortunately the desires of your son and other family members, though very understandable, are only adding stress to a situation already overflowing with stress. It's natural that everyone wants your husband to pull through but the cold hard reality is that the best intentions and most positive attitude can't overcome all odds. They need to accept, as the medical professionals have who have cared for your husband, that putting your husband through further treatment, especially those lacking any established credibility is detrimental to all concerned. As Cath1 writes they are desperate to feel some control. That is not accomplished by being in denial but it is within the means of each of you to actively support your husband and each other. Now is the time to make sure that there are no later regrets for words left unspoken and I'm sure there are words that have been spoken before that could well bear repeating even if your husband will be incapable of speaking. Even in this time of great travail transcendent moments may occur which can rank among the greatest memories of your life. And as your great loss approaches you have every right to bawl your eyes out. I suspect that your son and other family members will come around to your way of thinking perhaps after further discussion with your husband's doctors. I hope that happens before your husband (or you) deteriorate much farther. Please keep us informed how things develop.



Tian
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Reply by Carriek
06 Apr 2012, 2:48 AM

Hello Caron,

This is my very first time on the website, so I truly hope to discuss and share with you my similar story. I am so sorry that you and your husband are experiencing such sadness. I can truly relate, as
My husband (46 years old) also has Extensive stage small cell lung cancer. He was diagnosed 5 months ago.  We have 13 yr old twin Daughters, plus 3 older sons that do not live at home - our lives have been so exceptionally rewarding and happy until we heard those words.
He has undergone chemo and radiation, and neither have worked. It is agressively growing. It is in his lungs, lymph nodes, liver, spine, shoulder blades, neck, thigh, hip and brain.
My husband does not want to be told a "time", so I have such an overwhelming fear of how much time he has....
It is breaking my heart,  the last scan has shown rapid growth in the past month... Im so afraid.
Caron- I'm here for you & hope that you and I can share some strength. This will be the first conversation with someone that is experiencing what I/we are going through...
Sadness has taken over our lives-- and have found that most people that have not experienced this incredible sadness just cannot relate.
carrieK   
  

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Reply by Cath1
06 Apr 2012, 3:12 AM

Hi CarrieK:

I know you intend your message for Caron and I'm sure she will respond the next time she visits to our forum, but it is late on the eve of the Easter long weekend, and I just want to ensure you that someone is listening to you pour out your heart and caring about your feelings.

I am so sorry that your husband was struck with such a serious and life limiting illness in his prime. You are completely right, unless someone has suffered the same thing you and he are both going through they cannot know fully the extent of how frightened you both feel.

I know I want to understand, and I do empathize with you, but I will never tell you I know exactly how you feel because I have never had to face such heartbreak, but the kind of heartbreaks I have experienced have been made more bearable simply because of the care and kindness of others. It made a difference to me in my situations, and I hope that knowing others do care about the pain and terror you are suffering will give you some comfort.

I want to help and assure you that you and Caron are not alone and while your heart is broken and your life is filled with anxiety about what to expect, I hope that by reaching out and writing to us here it will help in some small way. I know it's not enough to make a huge difference all at once, but perhaps the more you reach out and unburden yourself from the weight of everything you carrying alone, while caring for and about your husband, and worrying about your kids, that little by little, day by day, we will add to your emotional strength through support and conversation. I know you need to help you cope because we all do. We are human and life's circumstances sure put our humanity to the test as you know better than I. I hope you will find the kind of help that you'll be able to relate to here in the Virtual Hospice community.

If you want to talk tonight, I'll be listening. If you prefer to wait for Caron or others to respond that's ok too and I will understand. You are one of us now. We are with you. Hugs from me to you! xo

Cath1


  

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Reply by Tian
06 Apr 2012, 1:52 PM

Dear CarrieK

What can I say? All too soon the love of your life will pass away and your children will be fatherless. No, I cannot relate and fathom the fear you are facing. Caron and others face a crisis similar to yours and you can support each other through the bond you share like no one else can. Yet there may still be times when you will think no one understands.  No one knows what you have shared with your husband but you. But as Cath1 so compassionately related you are not alone, we want to try to understand and I hope you will find some comfort here. You are in a place with open arms and open ears.

Tian

 
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Reply by Cath1
06 Apr 2012, 2:29 PM

Dear Tian:

You have a beautfiully gentle and welcoming way with us all. Thank you. 

Thinking of Carrie and Caron this morning, and everyone here in our circle of hope, as always.  

Cath1
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Reply by Carriek
06 Apr 2012, 5:26 PM

Thanks so much for replying, I could not figure out how to start my own discussion (my first time on here) I was drawn to Caron's post, as her husband has extensive stage small cell--same as mine.
I do feel so alone...Im sad, afraid all of the emotions that Im sure you are all familiar with, until 5 months ago I did not know or understand this pain.
 Caron I have questions for you, so I really hope you do reply (I have not been able to find anyone else that is dealing with the same diagnosis) I thought maybe since we were experiencing the same.. we could lean on each other.

Cath1 & Tian, thank you so much for your support.... I so appreciate your hugs and care cause I really need it...I have never felt so helpless in my life.... please keep talking with me....XO        

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Reply by Cath1
06 Apr 2012, 5:27 PM

Hi Carriek:

I see you tried to post. I hope the forum is not having tecnhical issues again! Please try to repost and be assured if you are having any issues, Colleen will help you.

I always copy my post before pressing submit, because if the system times out and it doesn't post properly the post will be lost. I often paste it into another program like MS Word or a draft email and then I can just copy and paste it here when I'm ready.    

If you've been timed out, once you sign in again and post a copied or new version of your post you should not have any issues if you post it quickly. I know how much energy it requires to compose your thoughts, especially when feeling emotional, and it's hard to remember what you've written. I hope you will try posting again and that it was just a little hiccup you encountered.

Cath1
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Reply by Cath1
06 Apr 2012, 5:36 PM

Hi Carrie - Whew! I'm so glad you were able to post.

I am happy to continue to talk with you and to listen to whatever it is you want to and feel comfortable to share. As Tian reminded me in another post, we are all in this together.

Heartache and fear and sadness are universal feelings, although sometimes we feel that our particular situation is unlike anyone else's and therefore it's hard to find the specific kind of comfort we seek if the other person is not going through the same thing. I understand. I am hoping that Caron will choose to rejoin this conversation because I sense that what you both need is the assurance that another person feels what you are feeling.

I see you have questions for Caron and she likely has some for you. Please know that if it is not Caron in this moment, and if I or others cannot answer your questions, someone will show up here who will be able to give you the help you need. In the meantime, I am here and I have the time to listen to you if you want to connect again.

Hugs xo

Cath1
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