Intro..mother of 47 yr old daughter with cc
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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! {{ }}
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.
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
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.
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
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
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
Betsy,
I am so sorry for your pain and your daughters pain. I will be praying for your family.
Hugs
LisaDear 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.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.
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.
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