Help me to help my wife....
Comments
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Hi all,
I am using my wifes' log in name, as I don't have one for myself.
This is our problem. She is 51 years old. My wife was dx'd with her 2 neu, prog neg, estrogen neg in Jan 05. Had mastectomy... horrible side effects from drugs.... so many complications.... she was diagnosed with a reoccurence in Sept 07, rads, tykerb, xeloda, zometa..... she was able to return to work as a teacher. She had been vomiting alot and unable to get food down. We tried everthing. A blood test on monday showed kidney shut down. She was hospitalized for fluids, albumin and saline... they took her off all meds.
Today, Thursday, the oncologist who had brought in a neprhologist told me that the kidneys are not responding, the creatinine and BUN is rising quickly and they fear that the end is near. They tell me that doing dialysis will only prolong her suffering and if she makes it past the kidney problem which they feel is a product of her severe liver mets that she will still have to deal with the cancer and they even found a new metastatic site to her brain. They feel the cancer is terminal and the oncologist said that if we don't interfere with the dialysis that she will pass quickly and he assured me realtively painlessly within the week.
I am at a loss, I have four daughters aged 12 to 22. I am about to lose my best friend, my lover, my wife of 26 years. My reason for posting is to ask a few questions from those who have had loved ones in this position before.
1) Am I doing the right thing? Should I accept the fact that dialysis will prolong her suffering and lead to the same conclusion or should I persue it to allow her to be with us as long as we can. Is that fair?
2) Should I bring her home and let her die here? The onc told me I would not be able to care for her properly as she will deteriote quickly.
3) Should I bring in hospice? She is aware but extremely fatigued and while she knows what is going on she doesn't want to know all of the details. Would hospice help us?
I want to make the right decisions for her, I am terrified of the near future for all of us. Any suggestions will help me determine the best way to help her.
Thanks as always, this site has been a godsend for us and has given us many valuable answers to difficult questions.
Floyd Miller
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Floyd......I am so sorry you have to go through this. I can't offer much help or advice other than saying, what does she want? My friend had hospice care at home for her husband.....he passed away at home where he wanted to be so, care should be available at home if that's what you both want. God Bless you and your family in this difficult time.
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I am sorry. Floyd, you and Debbie sound like a great team.
Call hospice--they are supposed to help. It doesn't mean giving up, they should give you some support. Call for a second or third opinion. Talk with your wife and listen and make a plan, even if it is one day at a time. find a way to be together and be as comfortable as possible. I am thinking of you.
Take care,
--Hattie -
Floyd - YES, do call hospice. They care for the whole family, not just for the patient. Helping you with these decisions is part of their service also - do you bring her home, if so how to care for her there, dialysis or not, etc. This is a cruel and scary time to try and stagger through all on your own. Hospice is staffed by professionals who are trained in end-of-life issues. They are experienced in overcoming the hurdles that you are likely to face - freeing you to spend as much time as possible cherishing these last days and weeks with your wife.
My best to you and yours
Lisa
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I agree. Call hospice. You need this support.
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Yes, call hospice and don't drag out your poor wife's suffering by going through with the dialysis. I came to this board for support and advice with my MIL who has mets to liver and now brain and just started hospice. She is at home, but when her conditions gets progressively worse, they do offer inpatient hospice (when they feel she's near her last two weeks of life), so there are options if bring your wife home is not possible.
But my mother (who doesn't have cancer but congestive heart failure) has been on life support for almost a year now (ventilator and dialysis). She is not in a coma but aware and alert. She had a few close calls where she almost passed, but my father ALWAYS chooses to resucitate her and will approve any treatments for her no matter how much pain and suffering she is going through. She says she doesn't want to discontinue life support - she is scared to die - but at the very least my dad could tell the hospital to do not resucitate if her heart would stop on its own. It's heartbreaking to watch everything she is going through.
My heart goes out to you - tough decisions ahead and so difficult to watch our loved ones slip away but better that they not suffer because we don't want them to go.
My prayers are with you.
Linda - PA
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Floyd,
I don't have any further advice; calling Hospice should get you in touch with people who can help with both the practical and the emotional aspects of your experience.
I just wanted to say that I am so very sorry you all are going through this. You and your family will be in my prayers.
(((HUGS)))
Diane -
Floyd, my father -- who was a doctor -- was referred to hospice after about a year of congestive heart failure when he began to have secondary kidney failure and declined dialysis. Hospice was very good for him and us. It was very touching to hear him acknowledge learning, as a doctor, in his final days -- just how much hospice had to offer, how well-trained and caring the hospice people were.
So -- yes, please call hospice. You probably already have. My heart goes out to you with this difficult decision. I think the fact that your wife is saying she doesn't want to know details means she trusts in whatever you decide -- and hospice will help you with deciding.
Love to you, your wife and daughters,
Ann
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Floyd - My heart goes out to you, your wife, your family. Gosh...I am so sorry. Hospice will help you with your decision. They deal with this type of situation - daily. I am so very sorry.
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Floyd....call hospice first, then speak to your wife. Your answers will come. You have my thoughts....I am so sorry.
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Floyd, I'm so sorry. I'm praying for you and your wife. May our Lord help you make the right decisions, and may He comfort you both.
God bless.
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Floyd,
My heart goes out to you that you are in this predicament. It is not easy to make decisions regarding treatments, particularly those that may have irreversible consequences.
In my opinion:
Not doing dialysis leads to an irreversible result of patient's death (no matter how painless, peaceful etc.) according to your post, then as a person responsible for making a decision, I want to make following happen:
1. I want to give myself as much time as possible to make an educated decision so there are no doubts left.
2. If at all possible I want to make the patient reasonably well enough (even if temporarily) to participate in the process of making that decision.
If that means giving dialysis some time then that is what I would lean on as a caregiver/decision maker. It will allow me time to talk to the family doctor (who may have known your wife longer as the oncologist and kidney drs certainly don't seem to have based on your post), your adult children (who may have input), close family/friends, and organizations such as hospice, as necessary.
Given proper treatment (say dialysis) and care, your wife, a 51 year old that was working a few weeks ago may be brought to a state where she can think a bit better and participate in the decision making.
These are just my thoughts but I have to say that I am a stage iv cancer patient myself. You may want to post this question
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Sorry for some reason got posted twice and before I finished. So deleting one.
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Floyd,
My heart goes out to you that you are in this predicament. It is not easy to make decisions regarding treatments, particularly those that may have irreversible consequences.
In my opinion:
Not doing dialysis leads to an irreversible result of patient's death (no matter how painless, peaceful etc.) according to your post, then as a person responsible for making a decision, I want to make following happen:
1. I want to give myself as much time as possible to make an educated decision.
2. If at all possible I want to make the patient reasonably well enough (even if temporarily) to participate in the process of making that decision.
If that means giving dialysis some time then that is what I would lean on as a caregiver/decision maker. It will allow me time to talk to the family doctor (who may have known your wife longer as the oncologist and kidney drs certainly don't seem to have based on your post), your adult children (who may have input), close family/friends, and organizations such as hospice, as necessary.
Given proper treatment (say dialysis) and care, your wife, a 51 year old that was working a few weeks ago may be brought to a state where she can think a bit better and participate in the decision making.
These are just my thoughts (I am not a medical professinal or have not made any such decisions for any loved one) but I have to say/disclose that I am a stage iv cancer patient myself. So my perspective may be tainted by that.
You may want to post this question family and friends of cancer patients forum where you may get more responses and experiences (not much activity here). Also Recurrences and Metastatic cancer forum also has a lot more activity and get more responses.
My prayers are with you.
-luckywife
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Floyd,
My heart goes out to you that you are in this predicament. It is not easy to make decisions regarding treatments, particularly those that may have irreversible consequences.
In my opinion:
Not doing dialysis leads to an irreversible result of patient's death (no matter how painless, peaceful etc.) according to your post, then as a person responsible for making a decision, I want to make following happen:
1. I want to give myself as much time as possible to make an educated decision so there are no doubts left.
2. If at all possible I want to make the patient reasonably well enough (even if temporarily) to participate in the process of making that decision.
If that means giving dialysis some time then that is what I would lean on as a caregiver/decision maker. It will allow me time to talk to the family doctor (who may have known your wife longer as the oncologist and kidney drs certainly don't seem to have based on your post), your adult children (who may have input), close family/friends, and organizations such as hospice, as necessary.
Given proper treatment (say dialysis) and care, your wife, a 51 year old that was working a few weeks ago may be brought to a state where she can think a bit better and participate in the decision making.
These are just my thoughts but I have to say that I am a stage iv cancer patient myself. You may want to post this question family a
nd friends f -
Floyd,
My heart goes out to you that you are in this predicament. It is not easy to make decisions regarding treatments, particularly those that may have irreversible consequences.
In my opinion:
Not doing dialysis leads to an irreversible result of patient's death (no matter how painless, peaceful etc.) according to your post, then as a person responsible for making a decision, I want to make following happen:
1. I want to give myself as much time as possible to make an educated decision so there are no doubts left.
2. If at all possible I want to make the patient reasonably well enough (even if temporarily) to participate in the process of making that decision.
If that means giving dialysis some time then that is what I would lean on as a caregiver/decision maker. It will allow me time to talk to the family doctor (who may have known your wife longer as the oncologist and kidney drs certainly don't seem to have based on your post), your adult children (who may have input), close family/friends, and organizations such as hospice, as necessary.
Given proper treatment (say dialysis) and care, your wife, a 51 year old that was working a few weeks ago may be brought to a state where she can think a bit better and participate in the decision making.
These are just my thoughts but I have to say that I am a stage iv cancer patient myself. You may want to post this question family a
nd friends of -
Floyd,
First, my heart goes out to you and your family. I would certainly call in hospice, and they can come to the hospital to meet all of you. The
y will have resources for your daughters as well as yourself and your wife. My family used hospice for my mother in law and wished we would have called them sooner. It does not mean you are giving up to call them, it just makes it a much easier transition for everyone and they can take care of so many things for you to free up your time for family needs.
One thing to consider, is there a residence hospice home in your community? These are places where people may choose to go rather than passing at home or the hospital. With the ages of your kids, it is something to consider if it will give you comfort to bring your wife home or if it would be hard for the long run for your kids to live where their Mom passed away. These are such monumental decisions and you will need help. Please know we are all thinking of you all and sending strength and prayers to you.
I do not know what to tell you regarding the dialysis. Your heart will tell you and you will be at peace with your decision. I am sure your wife knows your deep love for her and that your decision will be based on that love. Bless you all.
Diane
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Hello and thank you all for your thoughts, prayers and advice.
Some things have changed.
1) for the first time, the creatinine numbers that predict kidney failure have slightly reversed. This means that the kidneys are slowly starting to work. There is no need at this moment for dialysis so that question is off the table for now. The nephrologist told us that we would know the extent of the return of function within the next three days. It seems nothing short of a miracle.
2) The oncologist is concerned mostly about the liver, it is extremely damaged. There is little hope according to him that there is a chanch at repairing or reversing the damage. The liver numbers continue to rise, but he thinks that when the kidneys start to work again there may be a slight reversal in the short term for the liver.
He is going to check the clotting factors and the bilirubin tommorow to see if there is something he can do the stall the decline.
3) I have an appointment and an evaluation for hospice for Monday. It was the first one they had. The Oncologist told me that they would give me their opinion on what they could do to help us.
Deb has been mostly lucid, but she does have some periods of time that are a bit frightening as she drifts from the conversation and talks about things that I cannot follow. We have been around her all day, she has some severe pain in her left arm, as there is a mass in her axilla and she has some lymphedema, an OT specialist gave her an nice massage today for about and hour. She also has some vertebra collapse from the bone cancer. She cannot talk to me about her wishes for her care. I think it is hard enough for her to think about it, much less say it out loud. Maybe the hospice people will approach it in a better manner and get the best responses.
I admit, I don't know what to do. I took the advice of most of you and I really appreciate the time you gave me and the responses. Thank you.
Lucywife, I understand and appreciate your concerns. I have spent over 3 hours today in consultation with the oncologist and nephrologist, her cardiologist and a cousin who is a medical doctor and on staff at the hospital and the director of nursing. We really don't have a family doctor as Deb was the picture of health before January 2005. We have seen many specialists for all of the many ancillary condtions she had (infectious disease, cardiologic surgeons, radiation doctors and plastic surgeons) but our oncologist remains to date, the one we rely on to help us make the decisions on care. I have also invited my wifes family to meet with the hospice people as well as my oldest daughters so that we can all have a hand in the decision process and decide what is best. You see, to me, this is the hardest thing I have ever had to go throught to see my best friend of almost 30 years go through this process. I have only the thought on what is reasonable, humane and dignified for her care. I have made no decision without consultation and research, a lot of it here on this site. Thank you for you input, the intention that you have is very dear to my heart. I wish you the best and appreciate what you had to say to me. I posted here because I have lurked and learned for a long time in reccurences and I am sensitive to the fact that asking questions in that forum about the end stages as I am asking here might affect some people who may have a similar outcome as Deb. I thought this forum was better because the people here have traveled where my family seems to be heading.
Thanks again for everyones postings. I will update this thread as to our progess. I am open for all suggestions, comments and prayers.
God bless you all,
Floyd
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Floyd, call hospice, take your wife home. Gather the family, bring her favorite music in, favorite flowers, open all the windows, and make her transition as beautiful as it can be. I did so for my mother, and my first wife who died at home from pancreatic cancer. Make it ok for her to go, ok for your daughters, and as ok for you as it can be. It will be the single hardest thing you have ever done in your life. But now is the time to find the heart and the strength to do the one thing we never want to do.
To let go.
My heart goes out to you, I know the path you are on.
Peace, wherever you can find it.
Erick Carpenter
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Floyd,
I am so glad you have been able to get an appointment with hospice and that Debbie's condition has stabilized somewhat. I understand why you posted under this part of the site, but I do want to let you know that as a Stage IV patient myself, I would be happy to welcome your questions and concerns over at the recurrence and metastatic disease section of the boards. It is very kind of you to consider the impact of your statements/questions on those of us with stage IV disease and I thank you for it.
You, Debbie, and your family will continue to be in my thoughts and prayers. I am so sorry this is happening!
((((HUGS)))
Diane -
Floyd,
Happy to know that Debbie's condition is becoming stable. Thanks for the update. Also glad that you are taking the time with family and doctors while giving her time to figure this out.
My prayers are with you.
-luckywife
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Floyd, I will continue to pray for Debbie. What a blessing that her kidneys are starting to work again. Prayers still move mountains, and God still works miracles. Never lose faith, Jesus saves, Jesus heals...
God bless you both,
Aurora
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My thoughts and prayers are with you, Deb and family during this really difficult decision making time. Hospice care was beyond helpful in helping us care for my mother. They were supportive to the whole family and very loving and gentle.
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Just an update to those of you so kind to reply and send your prayers and support.
Deb's kidneys have improved, however her liver, especially the hepatic - portal vein have a lot of pressure and her bilirubin is rising on the average of one point a day, it should be around one it is now 5. It was explained to me that by 9 or 10, she will slip into a coma.
I have hospice on board, they appoved her immediately on examination and review of the record.
Due to the liver disease, she has fluid in her abdomen, it is very distended. She is in increasing pain. I still have to tell my two youngest girls ages 17 and 12 that we are close to the end. I have so much on my mind and I feel that once I get a handle on things, they slide out of control.
I will let you all know how we do in a few days. Please, keep Deb in your prayers...we need them.
I welcome and suggestions and thought.
Bless you all
Floyd
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Floyd,
You, Deb and your girls are in my prayers.
If you're finding it hard to tell your daughters what you need or want to say, maybe write this on a list to mention to people at hospice? Even aside from anything the hospice people may offer you, maybe just describing to them the things you feel you need to say to your daughters will be a helpful preparation for you. I can't imagine anything more difficult -- I am hoping for the best for all of you.
Ann
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Floyd,
I am so sorry. I am glad that hospice is now on board. They should help to make sure that Debbie doesn't experience too much pain. You and your family are in my prayers, you can be sure of that.
((((HUGS))))
Diane -
Floyd,
You and your family are in my thoughts and prayers. You are doing everything you can but this cannot be easy. This is a difficult time for you Debbie, your children and extended family. May you get the strength you need now. I am glad that hospice is on board and providing additional support.
My prayers for Debbie, you and your family.
-luckywife
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This reminds me of that movie ..."Terms of Endearment" where Shirley MacLaine just screams for the nurses to give her daughter meds because she is in pain ........ You are in great pain and showing great love thru all of this.
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Floyd
I am praying for you all ...the hospice will help you ....please make sure you get enough rest xxx I am holding Debbie in my heart and hope she is more pain free today xxx
MUCH LOVE xxx
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Hi
I am so sorry that you, or anybody else for that matter has to endure , and experience this enormous tasks before you. I honor and respect those in our world that step up to the difficult challenges and though some have no other choice to deal with certain hardships, some (few) that have such a choice remain and stay the course. You sir are an example of what many would like to believe that they could do but fall way short of actually doing what really matters. I can not say I understand what you are going through but I would like to think that I would stay such a course had I been married or with a Significant other for so long and face such a hurtful experience. Remember to cry my man, we as men need to cry more, weep with others more, and let our souls be cleansed with a hard cry. We are not able to save the world, or protect those that we love from hardships or hurts, or able to right wrongs that have already happened. We are simply not able to fix the things that men often find threatening. We are often powerless and are not responsible for the wrongs that our loved ones experience. We simply need to be there and do what is within our means, its all we can do.
I will pray for you
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