Topic: Intro..mother of 47 yr old daughter with cc

Third year on hospice. Spontaneous femur green stick fracture. I am immobilized with grief and fatigue...and bewildered at daughters constant irritation with me.

Re: Intro..mother of 47 yr old daughter with cc

Dear Betsy1 welcome to our remarkable family. I can see your frustration in just the few lines you wrote but did you mean your daughter has been in Hospice for 3 years? If so is she in a facility or home hospice? How long has she had CC and what is being done for her. I really can't say anymore with out knowing a little more. BUT with that said my daughter is 51 and we are extremely close but I know she gets irritated with me at times. I think we kind of do a role reversal where we become the kids and they are the Moms. I really would like to know more so that I can answer you more intelligently. I just want you to know your post is now being seen but we really don't know anything to answer to. Looking forward to hearing more from you.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Intro..mother of 47 yr old daughter with cc

I just spent an hour on a long hunt and peck answer, but it seems to have disappeared before I completed it...so I will just say she was diagnosed with stage 4 intrahepatic cc.  Probably 4 yrs ago
About 3 years ago she went home from the hospital to home care hospice with the professional guess of a life expectancy of 6 to 9 months. No treatments. Just palliative care. Until her femurs spontaneously broke at the site of bone lesions we didn't know she had. Hospice noted the leg pain and treated it for pain but not for finding reasons for this new pain. This was about a month ago, and she had titanium rods put in both femurs and radiation at the break sites. She is back home, catheterized, bedridden and miserable. Her belly is quite swollen, and she is being treated primarily with pain killers and Ativan.

There are pages and pages of pain and difficulties I have not addressed here.

Like you, Lainey, this daughter and I have been very close..and of course we have weathered anger, upsets, etc. But this behavior is different. It appears to be purposely painful, and has been aimed primarily at me and her husband. And now her own daughter.

Re: Intro..mother of 47 yr old daughter with cc

Dear Betsey1, first I wish to say if I was your daughter I would be mad at the world too. Who other than her family can she take this anger out on? No one.
No one can imagine the pain she has been in and I have some questions so that maybe I can help you. Ativan can change one's personality as can some pain Meds. My heart is breaking for her as I am feeling she has not been getting proper treatment. Have you ever got a 2nd opinion?
What are they giving her for pain?
I believe it is a miracle she has survived for 4 years as it sounds like she has had no treatment. May I ask where she is being treated?
Have you had problems with her treatment as a patient with her ONC and her Hospice? I am sorry, I know you are very upset and I am upset for you but something just does not sound right to me and I would like to do my best to help you. My gut is just not saying this is right. When she gets angry or agitated don't argue with her, maybe just lightly touch her arm and show her you care that way. She will not have you to argue with then. Or say I love you and I know you love me. Please tell me more if you can. I am not an expert but I would like to try and help. I think if you could tell us a little more you will also get more members answering you. Honestly they may not know what to say as in 8 years this is a first of this kind. I am here for you, you are not alone, just need to really understand what has and has not been done for her. I pray I am wrong.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Intro..mother of 47 yr old daughter with cc

Betsy,
I am so sorry for your pain and your daughters pain. I will be praying for your family.
Hugs
Lisa

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: Intro..mother of 47 yr old daughter with cc

Betsy,

I am so sorry for what you are going through with your daughter.  It sounds like she has been through so much the last four years.  I am a little over two years with my diagnosis, and although I am doing well in some respects, I get so angry sometimes that I just shutdown emotionally.  When hit with a disease like this it's hard to stay positive all the time.  And with what your daughter has been through, the difficulty for her is immense.

That being said, as a caregiver, you have to take care of yourself.  I'm sure, as a caregiver, have your own set of issues with anger and sadness for seeing your daughter go through this - and for four years - I can't even begin to imagine dealing with all those issues she has had.  My heart breaks for all of you.  I hope some of the caregivers on this website will respond to your post and let you know how they deal with the ups and downs of their feelings while they care for a loved one with this horrible disease.

My heart goes out to you and I wish you peace and love in your family.

Mary

Re: Intro..mother of 47 yr old daughter with cc

I'm very sorry to hear of your daughter's condition. It sounds like your family has been through so much.
I also have CC and live in Hillsboro, OR.  Where is she being treated at?

Take care,

Susie

Re: Intro..mother of 47 yr old daughter with cc

Betsy1 -
So sorry that things seem to be going the way they are. Three years on hospice is remarkable itself. It might be time to start asking questions of Hospice about medications because as Lainy said pain medications and Ativan can change personalities greatly. Of course it may just be anger at the world and has been said you are available. I know when my husband is feeling bad he lashed out at me and out daughter - the only ones around. But that being said there are physical things that may cause problems too. If her liver is not working well then her ammonia level may be climbing....something like Lactulose may bring it down or there are meds like Haldol or Seroquel that can help (they are pretty strong anti-psychotics) but our hospice team uses them regularly in situations of agitation. Just throwing some suggestions out but definitely keep asking, the sqeaky wheel gets greased.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Intro..mother of 47 yr old daughter with cc

Thank you all for your kind concern. Paula was diagnosed, had surgery, chemo and radiation at OHSU. Her hospice was Odyssey until they were bought out by Gentiva out of Texas. I think Paula went on board with them while they were making the transition. The hospice people who work with Paula hands-on, are good people. The gentiva administration...not so much.

Once she went on hospice, all treatments stopped. It has all been symptom -driven pain and anxiety relief. Her only doctor is the hospice doctor. She had never met him until August of this year when her left femur broke. He came to visit her at St Vincent Providence the morning she was released to go back home and back on Gentiva home hospice.

Until the fracture, hospice had her on fentynal patches, dilaudid and lorazepam.
While in the hospital for the bone repair, she was changed to OxyContin 120 mg am and OxyContin 120 mg pm. She has as prn sublingual oxycodone, oxycodone 5 mg tablets and sublingual lorazepam. She was recently put on lactulose for constipation and to help clear her confusion in case she had a buildup of ammonia. Her confusion is worse and nausea and vomiting have started about the same time she started lactulose. She is allergic to morphine. Fairly early in hospice they tried methadone for pain relief but she had a severe reaction to it.
She is also on a creme delivered topically for nausea. They have mentioned haldol, but she is not on it.
I was surprised that her OxyContin dose remained so high after her surgical pain eased somewhat.

I never argue with her nor correct her behavior when she lashes out. I understand it could be caused by many things and I never would want our last words to each other to be harsh.

She is married, but her husband is paraplegic and he is physically limited in his ability to care for her.

Susie, I see we live in the same town. What doctors do you see? Are you currently in a treatment program? Is your cc intra or extra hepatic?

My daughter has declined dramatically since the fracture. She is very thin and very weak. I don't see how she can live much longer in such misery...and I am brimful of anger and despair that this is so hard and nothing seems to help.

Re: Intro..mother of 47 yr old daughter with cc

Betsy -
I am so sorry that you have had to go through all this. You are in the toughest  position ever as a parent and a caregiver. I would suggest that you doubly make sure that you take care of yourself too. If you do not have help then talk to the Hospice Social Worked to see if there is some respite care available for you and for your son-in-law.
And as I said before just keep telling your concerns to your hospice nurses. They are there for you and to help deal with all those symptoms including the Nausea and vomiting. I know sometimes the lactulose can do that since it so thick and sweet. It will still work if you put it in something else like some juice or something like that and it might help better. Or just make sure she even has a few crackers in her stomach before taking it.

Hang in there and keep us posted.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Intro..mother of 47 yr old daughter with cc

Hi betsy I am truly sorry for all the pain all of you have had to suffer.  Welcome to this forum it has been such a blessing to find peace here. I wanted to reach out ad say hello. I am 34 and was diagnosed in july with icc. I live in corvallis but get all my treatments and onc is at ohsu.

Hope, love, strength...2013 and for the years to come, Porter.

Re: Intro..mother of 47 yr old daughter with cc

Betsy, Betsy, I am at a loss for words. You must be a very strong woman even though you don't think so right now and I am not so sure I could hold up under the same conditions. How I wish I could say, "Come with me we are going away for a relaxing weekend". I am sure you would love a break but I am also sure you don't want to be away from Paula for a minute. I thought of a small thing but am wondering if the Nurses would know if you could get help like Meals on Wheels, just a thought.  Do you have family where you are that can help even a little? I just remembered that Teddy was on mega doses of Morphine and they caused hallucinations so he was put on Haldol and it worked for him quite well. No more questions from me, you have enough to deal with but please always know we are here to help you through this any way we can! Sending you the biggest cyber hug ever!  {{      }}

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Intro..mother of 47 yr old daughter with cc

Betsy,

I had intra hepatic cc and had a resection 2 1/2 years ago.  I got my resection at UPMC followed by chemo and radiation at OHSU.
I met Paula before.  We sat next to each other about 2 years ago in the infusion room.  She was getting radiation and was at the infusion room for fluids.  She is a nice lady and I'm so sorry to hear she is having such a difficult time.  She posted on this site a few times.  I knew she was stage IV and getting palliative treatment at the time I met her.  I kind of assumed she had passed by now.  I'm so sorry to hear about her current condition. 

Take care,

Susie

14 (edited by marions Fri, 11 Oct 2013 00:04:37)

Re: Intro..mother of 47 yr old daughter with cc

Betsy.....my heart goes out to you and your daughter.  I am glad that you came to this site for support and for sharing your thoughts. 
Heidi, one of our two volunteer nurses, specializes in palliative care issues.  At present she is attending a conference at MD Anderson on behalf of the Cholangiocarcinoma Foundation however; I will e-mail to her your postings.  Heidi may have some additional information to share with you.
In the meantime please know that we are here for you and that love is heading your way.
Hugs,
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: Intro..mother of 47 yr old daughter with cc

Dearest Betsy,
I was so sorry to hear about the suffering your family has been going through. There has already been some very good suggestions and support given here and hopefully some of that advice has helped you.
I wonder what diagnostics were used to diagnose your daughter with ICC, did she ever have an actual biopsy done? To survive for three years with no treatment is remarkable, as someone else mentioned.  That being said, there could be multiple reasons for your daughter's anger and agitation, as also has been stated here.
Psychologically, she must be suffering greatly. She may feel depressed and hopeless, this often manifests in the lashing out at loved ones you describe. Although it is difficult to have endless patience, if she will allow you to give her physical affection, that is sometimes an extraordinary healer of the soul. Climb into her bed with her and hold hands while watching TV or listening to her favorite music....lay with your head on her pillow and talk about fun memories from when she was healthy (her daughter can do this too!)...if she enjoys massage, rub her hands or feet with lightly scented lotion. Sometimes when someone is dying they are so afraid and angry, people tend to shy away from them, but that only makes them feel more isolated, which exacerbates the bad feelings.
She may want to talk about what's happening , or she may not, but the only way to know this is to ask her. You might start by saying, "Honey, you seem upset, and I can only imagine how you're feeling...do you want to talk with me about what you're thinking about?"
Physically, there could be many reasons why her personality has changed and she has become angry. As mentioned before, medications can often change personalities, patients can develop delirium (which may be intermittent or constant) which can make them confused or anxious, pain can cause lashing out and intolerance of others, poor liver function can cause lethargy and confusion, and lastly, although it's rare for cholangiocarcinoma to metastasize to the brain, it is possible, and this could also cause changes.
If your daughter has been on the same regime of pain medications for a while, the latest studies show that something called 'opioid rotation' can be very effective. You can ask your palliative care (hospice) doctor about that, and if he is not aware of it, perhaps you can recontact your oncologist. Being on Hospice care should certainly not mean that you have NO options. Palliative care reaches far beyond just pain medication.
If your daughter is agitated and not like herself, she could be experiencing delirium, Haldol is a wonderful drug for this type of difficulty. If her belly is swollen and painful, perhaps they could tap it to remove some fluid, or put a drain in to keep the fluid to a minimum so she is comfortable and her breathing is relieved.
If she would agree, maybe someone spiritual, either through your church or through Hospice if you don't have your own, could come to visit and talk with her. Many people are very fearful and have great despair at the end of life, they gain great comfort from having their sins forgiven, even symbolically, and talking to someone about faith and afterlife. She may need to talk about things that are uncomfortable to talk to her own family about.
Lastly, I would reiterate my advice about being especially careful to not shy away from her even though her words and actions may be rough for you to deal with. Do what you can to be physically present and loving, don't forget to touch her and hold her hand, run a cool hand over her forehead or brush her hair for her.
I hope that this helps in some small way...my heart hurts for you all. God bless you. Heidi

Re: Intro..mother of 47 yr old daughter with cc

On Monday, October 14, at 6:25, Paula breathed her last breath. She had spent a very rough weekend, with pain and agitation. She had a blockage high in her digestive tract. Whether stool or cancer, I don't know. On Sunday for the first time in a while she vomited. Meds for nausea, pain, and anxiety were administered with apparent minimal relief. Night on-call hospice came two or three times. On very early Monday she began vomiting copious amounts of brown fluid. I believe it was liquid feces that could not exit her body in the normal way. Her meds were adjusted. She stopped talking. She was too weak to hold the sippy cup that we used for her water. Her mouth dropped open, her eyes were half closed and a bit rolled up. She did not respond to anything. I constantly had my hands on her, telling her she was beautiful, perfect in every way and that she was safe and would be fine. I thanked her for all the years of caring she gave other people and for teaching us to take care of one another and ourselves and assured her we would be fine. She moaned constantly, sometimes saying 'mom'. The only time we heard other than moans was when she made a quip in response to something someone said. She experienced severe abdominal cramps and appeared to be comforted and worked with me when we did deep breathing together. The nurse suggested I call the family. When her daughters got there, the moaning stopped, but not her disappearance. This continued for several hours and I feared she would breathe raggedly and be in pain for days. I was out of the room for a few minutes and felt the need to go back. When I walked in the nurses had raised her bed and were telling her I was not gone I was right there. I ran to her side, followed closely by her brother. I took her face in my hands and told her I was there and would not leave her. I asked her if she could look at me. To my amazement, her whole face made a movement that was reminiscent of a camera adjusting itself. She looked straight into my eyes with clarity and intelligence and held my gaze for 5 to 10 seconds and left without a sound.

Re: Intro..mother of 47 yr old daughter with cc

Ah, Betsy I am so sorry that your daughter lost her battle with this awful disease. It was great that you were able to be there for her through all of these last three years and to be with her in the very end.
Take heart that she will always be with you in spirit and rely on those good memories through the years to get through these times.
You and your family are in my thoughts and prayers.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Intro..mother of 47 yr old daughter with cc

I am so sorry, dear Betsy.  Your presence gave her comfort and peace  My heart is with you and your family.
Hugs,
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: Intro..mother of 47 yr old daughter with cc

Dear Betsy,

You brave, remarkable woman. I am so sorry to that your daughter Paula has died - I can't begin to imagine how difficult this is for you.

X

Clare

In the stars now . . . .

Re: Intro..mother of 47 yr old daughter with cc

Oh Betsy,

I am so very sorry about your daughter.  I am sure you gave her the comfort at the end that only a mother can give.  I hope all of your wonderful the memories of your daughter fill your heart.  There are no words.

Hugs,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Intro..mother of 47 yr old daughter with cc

Dear Betsy, Please accept my sincere condolences on the loss of your daughter, Paula. Sincerely, Patricia

Re: Intro..mother of 47 yr old daughter with cc

Dear Betsy,

I am so sorry to hear that Paula died on Monday.  It must have been so difficult for you.  But I'm sure having you there with her until the end meant everything to Paula.  You are a strong woman.  I hope, in time, happier memories can fill your mind and bring you some peace.

Please know you are in my prayers.

Peace & Love,
Mary

Re: Intro..mother of 47 yr old daughter with cc

Dear Betsy,

I am so very very sorry to hear of the passing of your dear Paula, please accept my sincere condolences. I so wish that right now there was something that I could do to help ease the pain that you feel. Please know that my thoughts are with you and your family.

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: Intro..mother of 47 yr old daughter with cc

Dear Betsy, I am so sorry to read about Paula. She is now healed and at Peace. You were lucky to have each other through this terrible Journey. Please accept my heartfelt condolences.

Those we love must someday pass beyond our present sight…
They leave us and the world we know without their radiant light.
But we know that like a candle their lovely light will shine
To brighten up another place more perfect…more divine.
And in the realm of Heaven where they shine so warm and bright,
Our loved ones live forevermore in God’s eternal light.


Do not stand at my grave and weep;
I am not there. I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain.
I am the gentle autumn's rain,
When you awaken in the morning's hush,
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry;
I am not there. I did not die.                   By Mary Elizabeth Frye
For everything beautiful that you see
will bring a memory of me.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Intro..mother of 47 yr old daughter with cc

I'm so sorry to hear about Paula but thankful she is no longer suffering.  My prayers are with your family.

Take care,

Susie