Topic: Hi!

I'm writing as a wife turned caregiver to my husband who was officially  diagnosed with metastatic choloangiocarcinoma following nearly 4 months of testing. After being referred a top rated university cancer center on the west and the opinions of a review board, liver specialist, a liver oncology surgeon and multiple other oncology specialists it was determined to be inoperable/treatable due to the aggressive spread to his lungs, lymph nodes and the tumor consumes over 80% of his liver. I have read so many positive, heartwarming stories posted by caregivers here, but my story is not one of those (I wish it were). After hearing his prognosis (2-3 months) my husband withdrew from everyone and everything he loved. He stopped responding or interacting in conversations, refused to talk about his feelings and even went so far as to tell the rest of us to not cry around him. I can't tell you how devastating this has impacted our family. I try my best to be patient and understanding but it is a constant challenge. Since the Hospice nurses have come to visit my  stress has reduced some, but I still feel like an emotional prisoner. We had originally told Hospice that we wanted him to stay in the home until the end, but truthfully I don't know if I can handle it. Wondering if anyone else out there is experiencing something similar.

Re: Hi!

Dear Silentk,

I am so very sorry to read this; my heart breaks for you and your family.  My father died in Feb from lung cancer, and at the very end, my mother physically was not able to care for him so we did put him in a nearby hospice house.  Very different situations, but the one take away was that it allowed her at the very end to focus on being his wife rather than his caregiver.

And, I'm not sure if he would be open to it, but hospice also did offer emotional/spiritual counseling for the patient and the family.  Would he talk to someone outside of the family?

Take care of yourself,

Catherine

Not a medical Professional-  just someone who got caught up in this lousy disease.

Re: Hi!

Thank you, Catherine. He has refused all outside counseling, spiritual guidance and even support groups. He makes me feel so guilty the few times that I have left him to run errands that I do not get away from the situation either. My interpretation of the situation is that he is overwhelmed with the prognosis and he is resentful that at some point we are able to move on with our lives and he doesn't have that option. It is an impossible situation to be in. I will be discussing moving him to the Hospice care center with our kids, then with the Hospice social worker when I feel I have hit the wall with providing his care.  Hoping for a change of attitude-soon.

Re: Hi!

Silentk.....I feel fo you. Do you have a support system?  Have you spoken with a psycholoist?  You are and your husband are suffering in your own way and both of you need some help.

Hospice should have picked up on this.  It's obvious your husband is suffering from depression and who knows what else.  Put pressure on the treating nurse so that your husband as well as you are evaluated for the use of an antidepressant,

Hugs and good luck,

Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hi!

Dear Silentk,

I am so sorry that you and your husband (and family) are dealing with this, and I agree with the advice given by Catherine and Marion.  I also agree that you are in an impossible situation.  This diagnosis/prognosis is a massive blow to all of you.  I'm so sorry that your husband isn't able to cope and has shut down.  Accepting your comfort would likely ease his pain and fear somewhat, but at least for now he won't allow that.  Perhaps he will be more open to love and support in the near future.  For now, I would just be there for him but expect nothing from him.  Unfortunately, this is his diagnosis and he gets to choose how he handles it.  Try to keep in mind that these are extraordinary times and this is not the husband/father you/your family know and love.  I would just be there for him (taking some sanity breaks) and know that soon you will have time to grieve and then start healing.

I hope this advise doesn't come across as harsh.  I know this is probably tearing you apart, and you and your husband should be able to comfort each other at this time.  Please lean on us on this board, or vent to us, or whatever you need to do to get through this.  We care and are there for you.  Your family will  be in my thoughts!

Debbie

Re: Hi!

Thank you all for your encouragement. I am reaching out to our social worker who is amazing, if nothing else to vent to her about my frustration with how he has chosen to spend his final few months of life. I am devoted to give him the best life, love and support he will accept and grieve for what could have been when I no longer have to deal with the negativity. My dr is very supportive and has given me Lorazepam to help with the anxiety. I have learned to use that, along with just walking away and taking a few minutes to myself if I get too frustrated.  He has admitted to his depression but absolutely refuses to take anything for it. So for now, I will remain hopeful that he will come out of this negative space so our family can experience happier times with him.

Re: Hi!

Silentk.....already you are doing anything possible to help ease the situation.  Caregiving is a tough and often times not recognized for it's complexity.  You dealing with a situation no one is prepared for.  Glad you found us.  We can relate to what you are dealing with.
From your husband's perspective:  He has lost control over his body and now he exerts his control in other ways.  That may very well be the reason for his denying any type of intervention regarding his mental health.  Perhaps the physician can achieve some results?

Thinking of you and sending tons of hugs your way

Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hi!

Dear Silentk,
I am so sorry that you and your family are going through this.  I was once in a position where someone I cared deeply for refused counseling and I found tremendous relief attending counseling myself.  The counselor suggested I tell my loved one that I was having trouble processing/handling the situation, and it would help me if they attended a session with me.  That was successful and led to private sessions for my loved one.  Even if my loved one refused counseling, I benefited from attending by myself.

I am so glad that it sounds like you have an amazing social worker.  Please continue to reach out to her, and your children, and be honest with what your needs are.  It sounds like a great idea to walk away when you need sanity breaks.  This sounds like such a scary time for all of you and I am glad you have discovered this board.

Best Wishes,
Victoria
PS - I hope you have been spared the horrible air quality that we have experienced here in Spokane

Re: Hi!

Thank you all for the support. It has been several weeks since my initial post and I have been super busy. My husband's family has taken turns flying here from IN and it has been a bit overwhelming. The good news is that it has helped my husband's attitude somewhat. He is still  somewhat distant, but at least at times he communicates. His disease has made him sleep the majority of the time and his feet and abdomen are swollen, despite the nurse draining his abdomen twice a week.  I have spoken with her about my fear of not being able to handle having him pass at home and she has said we will move him to the center when he gets to a point I feel I can no longer provide care for him.  The nurse really never gives any indication that she is concerned he is getting close to the end and his vital signs seem to be fairly normal but he has gotten so weak that he now requires a walker to get around the house. I pray she doesn't leave me in a situation I am not comfortable with, although we all accept that possibility when we agree to home care. Victoria, we have had minimal smoke in our area (30 miles north of Portland) but my oldest son and his family live in Bend and have suffered with very poor air quality due to the fires for over 3 weeks. Hope all is well with you all and thank you again for the encouragement,

Re: Hi!

Hi Silentk,

Welcome to the site and my apologies for not replying to you up until now. Sorry to hear of your husbands diagnosis and also what you are going through also with everything. Having been my dads carer when he went through this and also having been my mums carer for 11 years now I can relate so much to what you are going through right now.

My dad experienced much of what your husband is going through right now and he also withdrew a lot from everyone for much of the time after his diganosis. This I would argue is quite common. Part of his treatment was in hospital in which he had to spend around a month or so in a room on his own and his doctor put him on Prozac during that time. He had light sensitivity due to the PDT so had to stay in the room for a month and no wonder the docs wanted to put him on Prozac. Is there anyone that could speak with your husband on a man to man basis I guess to try and get him to talk a bit about things and what this is doing to you?

Your social worker sounds like they are on the ball here so maybe they could do this? An AD for yourself also sounds right as you have a ton of stuff now to deal with. Please do not ever beat yourself up about what you are doing as you are doing everything that you can to help right now. No one has wrote a book about the right or proper way to do all of this and there is no manual as it were. You are doing great so do not waste energy worrying about that if you were.

As to future care. If you feel that you have reached or reach the point where you do not feel capable anymore of providing the care that your husband needs and deserves then please please get on the phone to the social worker or the hospice team and tell them immediately. Do NOT feel ashamed or bad about doing that as that is their job and what they are there to do. They are the professionals and we are not. We do our best and what we can but sometimes we need the help of the pro's. No shame what so ever in that.

As to the ascites and the draining. The draining of the fluid from the abdomen will help your husband feel better once it has been drained but it will keep on coming back hence it will continue to need to be drained. But hopefully when it is drained he will feel a bit better after it. And the tiredness and wanting to sleep is also common and my dad went through that as well.

It does sound from what you say that you have a good team around you but remember not to be afraid to ask them for more help if need be. You should not go through this alone and fi it gets to the stage of in hospice care then they will be there to keep your husband as comfortable as possible. My dad went into hospice care and they took very very good care of him.

Now that you have joined us here you are definitely not alone in this, we are all here for you so please keep on coming back and we will help in what ever way we can. We don't have all the answers but many of us have been or are going through what you are. And if you want to vent, shout or scream then feel free to do so as that often helps! Please keep us updated on everything.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Hi!

Hi SilentK,

Just joined the discussion group today and happened upon your postings as the first I read.I am so sorry to hear about your husband's metastatic cholangiocarcinoma.My wife contracted this form of bile duct cancer in early June of this year,it had spread too far at the time she was diagnosed, and she passed away near the end of July.The feelings you are experiencing are like nothing else you have ever felt,it is both overwhelming and unimaginable at times..I know for myself it was like I was in a dream and almost was wanting to pinch myself to get myself to awaken.I'm not going to get into the medical aspect of the whole ordeal, I'm sure you have heard enough medical jargon to last you a lifetime,even though i know quite a bit in that area,I think it is more important to dwell on the real issue...the human cost and suffering,not only of the patient,but also of the caregiver and their families.
    The role of caregiver is not something we look to do,or even know how to carry out,it is thrust upon us with brutal reality...some of us are not prepared for this role..while for others it  is a must...you may be the only other person  close enough to the patient to attempt to carry it to fruition.You seem to be doing your best ,you have family , and friends to lean on, and  a professional team that is doing their best.One thing I can tell you...don't be too hard on yourself,take time for yourself,lean on other people if need be.The one attribute I found  out about myself at the beginning,during the process,and at the end...was how strong I was...this really tests you.
SilentK... you are going thru it,you logically and honestly know what the end result will be...and being his wife and love of his life,and life partner you would not want to be anywhere else except where you are by his side,SilentK,from reading your posts...your instinct and courage is second to none..you should be proud of  the way you have conducted yourself.After my wife passed away I had very littlke regret as to what I had done as her caregiver..I did the best I could under the circumstances...that is what you are doing...one day in the future you will look back on this and wonder how you ever got thru it...but you will...you are already doing it.Take care and I hope for all the best for you and your husband and your family.

Re: Hi!

Oh my! Ditto to all of the above.  After experiencing this surprise it has been a learning experience every step of the way, difficult decisions, and know what to accept and not from the medical community.  This is definitely no easy task, but when you care for a family member you do everything that is possible, but be realistic at the same time.  Yes, give the necessary breaks you need or this will overwhelm and stress you.  It's easy to get overinvolved and discouraged so you need to bounce back.  I have dealt with situations I never thought possible I can face, but have been present all the time.  That to me is the most important.  As I continue with the challenges, I have to maintain my life as well. 
Amazing job to everyone and joining for support.

Re: Hi!

Dear Rod (Diezeldoo),

I am so very sorry to hear that you lost your wife so quickly to this lousy disease.  For my mother, we were fortunate that routing bloodwork showed some elevated liver numbers and then a great GP decided to investigate further.

I'm not sure how much you have read, but this board-  and the whole CC foundation-  was started by people like yourself who lost a loved one to CC.

You are amazing to already be thinking of others and be willing to share-  but also take time to grieve and take care of yourself.

My heartfelt condolences and thanks are with you-

Catherine

Not a medical Professional-  just someone who got caught up in this lousy disease.

Re: Hi!

Dear Catherine(middlesister1)

Thank you so much for the sincere condolences on your part, it is appreciated.Yes...it is a lousy disease, it snuck up on us in the most insidious manner possible...silently, most of the time Cholangiocarcinoma does not present overt symptoms.Usually manifests itself initially with jaundice, as it did with my wife..she was a nurse for 40 years..she knew everything that was going to take place in the hospital and the medical procedures before and during this Hellish life experience.I have read quite a bit about CF, and have registered to volunteer my time and experience to those that need a helping hand and a shoulder to lean on.I am coping the best I can, under the circumstances, however helping others in the same situation I was in from June onward till today is probably one of the best therapies I know of to help alleviate the grief.Thanks for your caring post, Catherine.
Rod

Re: Hi!

Dear SilentK...Life has thrown you a tough pitch, and your dear husband is really hit hard, I am sorry all of you are having to deal with this difficult emotionally overwhelming situation. You are strong and as Gavin said ask for help when you need it, even if it is from god. Your strength is helping him, even when he shuts down he needs you more than ever. Please take care of yourself as well as him, you are his blessing. My thoughts and prayers are with you both....And for Diezeldoo (Rod) Welcome to our board, You have a wonderful way of assembling your thoughts and writing, and a great supportive tone that is fantastic, I hope you stay around for a while as we all seem to get back more than we give here. Your wife's story is tragic and cc struck you both, and it saddens me every time I read such a story for both her and for you and all who knew her. Your being here makes a big positive difference and once again welcome and I am looking forward to reading more of your posts, thank you, Pat

Senescence is a beautiful thing....

Re: Hi!

I am writing first to thank everyone for their kind words and support and to also update you on how things have changed. As my husband has come to accept that it is not I who keeps him from doing all of the things that he could accomplish even  just 3 months prior,  his demeanor has softened.  It has taken understanding from both sides, I must admit. Things that I allowed  bother me in the past I now understand are a direct result of the direct carnage this hateful disease brings.  Sure he lashed out, but I realize now he had to come to terms with so many changes in such a short period of time, none that he could control. I am grateful that his anger and resentment subsided before he leaves this world. It takes a lot of patience and understanding to deal with it but once you understand that the disease takes so much more from a person than can be imagined, unless you see it firsthand. My husband just 3 months ago was working a full time job and a year ago was 100 pounds heavier. Among other things this was striped from him. He now can't focus on a conversation, can't go into a grocery store because he is so weak and sleeps 3/4 of his day.  In addition to his physical symptoms, he has become fixated on fidgeting with things-dumping out items and carefully replacing them; counting and re-counting items. I fear that his end may be near and will be talking to his nurse about these changes. Curious if anyone experienced this with their loved one.

Re: Hi!

I am glad to hear that your husbands attitude has improved, especially towards you.  Although I know that my husband had many of those same feelings, he never took it out on me and for that I am grateful.  My husband did experience much of what you described.  He also lost a lot of weigh very quickly and became weak and tired and although he pretty much couldn't do much he also couldn't sleep.  I'm sure some of that was from all the anxiety of what he was going through and also the pain and other physical symptoms.  He did seem fidgety, but I think that was due to discomfort.  He also couldn't focus or hold a conversation the last few weeks.  Like your husband, he could no longer spend even a short time in a grocery store and would just go out and sit in the car and wait there for me.  The only thing I do not recall him doing is what you explained about dumping and replacing things and counting and recounting things.   He seemed more concerned about me than himself even tho' I tried to reassure him that I would be OK. 

Definitely talk all of this over with his nurse.  Hospice may have some suggestions for you.   Try to make the best of the time you still have.  None of this is easy, but you can do this.   Believe me, you are stronger than you know and will get through this.  I did and so can you. 

Take care and let us know how things are going when you can.  Thinking of you.

Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Hi!

Dear Pat (hercules) Thank you for the welcoming message you sent pertaining to my joining this astoundingly helpful discussion group.Also, gratitude for your feelings of empathy towards myself and my late wife. the last few months have been challenging and probably the most severe test of my character and spirit  I have ever experienced in my life, and at 63 years old I have seen much and experienced a variety of emotions both depressing and joyful.

Silent....While my wife's cancer odyssey took a different track than your husbands,( She got sick in early June, and passed away July 26, 2017), she did display some of the same behaviours...she would stay in bed all day..only arising to use the washroom...or go out and smoke.23  hours a day spent lying down, addicted to watching YouTube.The months leading up to the presentation of the jaundiced condition..her temper with me was short, and unpredictable.it was akin to lighting the fuse on a bomb and watching and waiting for it to explode ,and when the predicted explosion didn't go off..you felt safe to approach,only to be dealt a verbal assault  of anger,blame ,and irrational statements.As caregivers we are at a major disadvantage in a very important area...we are not them, we do not reside in their skin, and try as one does..it is impossible for us to feel their fears and pain, their possible regrets and loneliness.I myself was fortunate in that I am a fairly patient person, however, as the main caregiver you can only do so much and go so far in this journey with your loved one.As human beings..we are all singularly different from one another.My wife displayed certain tendencies, as your husband is displaying different ones.I can remember as recently as early June...she had bought me 2 new shirts in a store we visit frequently...I was in that store just the other day, looking at exactly the spot she stood when she had shown them to me, it seemed like it had taken place in another life.You remember your husband in a happier time before this disease manifested itself, and wonder..what happened here????Your journey is unique..and incredibly confusing, and hopefully may never happen again in your life..but you are handling it as well as I did, and you will learn as you go.You are very strong and care for your husband...that comes thru in your postings..he is very fortunate to have a lifemate such as yourself.I wish your husband well, and I wish you well also...we are like soldiers in a battle....we joined this war not knowing what the outcome would be, but we are brave enough to march right thru to the end with our wounds bleeding and uniforms torn and dirty...but we will make it...because we are surviviors!Take care of yourself.

Re: Hi!

Silentk,


I am so very sorry for what you are going through. And Rod, my heartfelt condolences to you.

I learned the hard way that hospital chaplains are excellent resources when dealing with family issues involving serious illness (and death). they are experts in family dynamics, and are very good listeners.

You don't have to be a patient to talk to them.
they were able to give me a whole different perspective, as well as good advise on how to handle a bad situation, and were a great help in dealing with my  parent's  final illnesses.

Thinking of you, and wishing you peace.

Re: Hi!

Dear Silentk,
Thank you for sharing your experiences with us here  I am glad to hear that your husband's anger has soften some, although this is still such an unbearable situation.  I am thankful you have a good hospice nurse you feel comfortable talking with and I hope she can provide answers.  Don't forget to take care of yourself and cut yourself a lot of slack.
Best Wishes,
Victoria