In need of advice to help my mother

[babyruth13]

My mother was diagnosed with Hep C in the 80's after blood transfusion after removing a phaeochromocytoma. She also suffers from Ankylosing Spondilitis & has declined any further medical care & I am caring for her at home. She is refusing even doctors visits. But has allowed a nurse practitioner to take blood monthly. etc. She has jaundice & extreme liver pain. I am curious as to what signs I should be looking for to know her condition has worsened? Also is there anything that can help subside the extreme liver pain & make her more comfortable. I would appreciate any advice. Thanks very much

[ceanothus]

I agree completely with dontworry. Do you have hospice care arranged yet? They can provide counseling for you on what to expect and they can provide strong pain-killers to make your mother more comfortable near the end. My own mother was on hospice care at home for the last 5 months of her life, and the hospice workers were extremely kind and helpful to the entire family. It's not clear to me (and maybe not to anyone) which of her organ systems is going to go first, so any number of different scenarios could result. High ammonia levels can seriously hit the brain, causing confusion, delirium or a coma which can be fatal in itself. Liver failure often causes ascites which are large pools of fluid developing in the abdomen, which can often be drained but without drainage can become infected or can exert so much pressure on other organs as to impair their functioning and/or cause pain. It's possible that this is a factor in the liver pain your mother is experiencing. Both liver and kidney failure can cause severe itching that can lead patients to inflict serious wounds on themselves while trying to relieve the itch. There are a number of interventions to make a patient more comfortable in the end stages of these illnesses but almost all of them require a hospital setting; the only common at-home helps are special beds, comforting massages, clean linens, loving family and friends, and strong narcotics. Do try to take advantage of home hospice care. Their nurses will help her be more comfortable and they will educate and support you too, as you have a very tough road ahead of you. I wish you the best.

[dontworry_behappy1]

I'm so sorry for your pain.  Your mother doesn't want medical intervention and is end stage liver and kidney failure.   She wants to die in peace.  Hospice provides comfort in a time when people no longer want medical intervention.

It's very hard to let a parent go.  Even when it's their very wish.  Your asking for non medical advice at this very difficult time.  You have been caring for your mother for a very long time and you have done a very good job. She is going to become more and more none response and then she will be gone.
Take this time to sit down next to your mother and tell her how much you love her.  I sat with my mother and told her how much she had given me in life and would always be with me.  I know this is really hard for you and continue to search for anything and everything to make her more comfortable.  You are her daughter who wants only the best for your mother in this very difficult time.  Taking the time to spend quality time with your mother is very important for you both.  Even if you think she might not be hearing you.   I will always remember my mother's and my last conversation.  It lives in my heart forever.  I watched my mother die of cancer.  It's was very painful.  It sounds like your mother is ready for hospice care.  I don't know where you live in the world but hospice is available for your mother in the US.  This maybe a good time to give them a call so you can get the best assistance and support for your mother's last requests.  Don't try to figure this all out alone.  Nobody is ever prepared to deal with the loss of a mother.  I can tell you that there is much relief when you know they are no longer suffering.   I wrote it all down and then read it to my mother.  I didn't want to forget anything I wanted to say to her.  I felt I had been given this opportunity unlike many to say good bye to the single most important person in my life.  Take this time as a blessing.
I will never regret, even in this painful time.... my last conversations with my
mother.  Your mother loves you and wants you to be ok.  

[babyruth13]

I should add that I am in contact with doctors regularly as well by the nurse practitioner & home care, I also have taken my home care aide course. I am not looking for medical advice but was hoping to speak with someone who has  also been caring for a loved one & can possibly guide me as to what to expect, what to do to make it is comfortable as possible etc....thanks again for your reply.

[babyruth13]

I am asking what to look for as in signs of her health declining more & what to expect near the end. She has been seen by rheumatologists, there are not any where we live & its difficult for her to even leave the houe. She has seen many specialists for the Hep C since she was fist diagnosed. Unfortunately she has had her fill of doctors hospitals,etc... She has been on so many different treatments & medications over the past 20 yrs. Her kidneys & liver are both shutting down & her ammonia & pottasium levels are very high. She is very progressed in her both her hep C & her AS. her spine is totally fused. Her wish is to die at home & I am just looking for info as to what I should look for near the end. We do have a nurse practitioner coming in weekly, etc Thanks

[babyruth13]

thanks so much. Thats is the dilemma she is not wanting any more medical intervention & its very hard for her to get anywhere as she has lost feeling in her feet & lower legs. I do have an appt myself to speak with our dr. on friday.

[Idyllic]

I am not exactly certain what you are asking. Why is your mother declining medical care? I agree with what has been said. You seriously need more information - maybe even a medical intervention.

Do you happen to know what your mother's genotype is and what stage of fibrosis she is? These are two very important factors you both should be aware of especially when it comes to deciding future medical care.

How well managed is your mother's AS? Is she being followed by a qualified rheumatologist or what? I strongly encourage you to ask her doctor for a referral for a good hepatologist.

There have been some amazing advancements in the treatment for Hepatitis C. Your mother might have more treatment options than she realizes.

[dontworry_behappy1]

I'm so sorry for your pain. Being the child of a very sick parent is really heart reaching pain.  Your mother needs to see a doctor.  You might want to give her doctor a call and relay your concerns and what to look for as her condition worsens.  Again, I'm so sorry but people on this forum aren't doctors.  

My heart is with you