Forcing Palliative Care

Hi, this is my first post. My 52 year old brother is, I believe, in very end stage liver disease due to alcoholism. He lives with my 80 year old mother who is and will enable him out of love. He can barely walk. He does not eat much. He vomits blood. His eyes are yellow. His skin is gray. He belly, legs, and feet are swollen. He stays in bed at least 22 hours a day. He has the shakes. My mother has heart issues since breaking her hip last year, she has HBP, she is frail but her whole existence revolves around taking care of my brother. She buys his medication, pays for a car that neither of them can drive and lives in a house that I believe is not safe. She, even though she would deny it, would benefit from independent assisted living because she has become so isolated, depressed, and her mental state is declining. She refuses to consider selling her house because of my brother but I believe she would refuse anyway. I am at a total loss as to what to do. My brother says he is staying with my mother because he promised my dad he would take care of her but...she is taking care of him. He is not a bad person but he is desperately miserable. I think he stays home for my mother and mymother stays 'home" home for him. Does has anyone experienced this and does anyway have ANY helpful suggestions as to how to get my brother in a nursing home so my mother will consider moving?

Welcome to the hep forum. We are those with liver disease, and those who love them. My husband, themister, has cirrhosis and ESLD. He is on the transplant list for nearly 2 years now.

I am sorry to hear your brother is struggling with ESLD. I am not sure how much involvement you have with your Mom and brother.

Though your Mom is 80, there are many caregivers in her age group that show up to husbands and other family members. It is sure not an ideal situation. Nor easy. But it is common due to the costs for outside help.

It doesn't sound like your Mom or brother are interested in changing the living arrangements. If she is of sound mind and owns the home, this is a choice she is able to make.

Perhaps trying to find some way to help them age and continue on at home would be an option? If they can not afford help, can someone in the family step in a day or two per week to assist with shopping, driving, errands, cleaning and meals?

This is tough for everyone in your family. Again, welcome. Big Hugs

Welcome so helpless and Azaleigha...busy day for new folks on this liver forum.

I am a co-moderator. My partner has liver disease...suffered with Alcoholic Liver Disease, Hepatitis C, and Liver Cancer (Heptocellular Carcinoma). When he was very very bad, he decided NOT To die of End Stage Liver Disease, got sober, went to AA, got into a transplant program, and will be 4.5 years sober and post transplant on May 1st. He is 65....way older than your brother.

Though he is very ill, actually HE could choose to live.

If he does not, well that will be sad, for him and for your Mom.

I suspect there is not much you can DO about the situation at their home unless or until there is a medical crisis...which one first will be the key. When that happens, perhaps you and your siblings might be able to make some better plans.

This is a sad situation, but people are sometimes their worst enemies while they try to do their best.

Alcoholic Liver Disease is a killer!

Hugs,
Mama Lama

This is a sad situation for you. It looks like your problem is more with your brother's alcoholism, and the family dynamics between him and his/your Mother.

I have a couple of resources you can try. I hope they help you.

Alanon is an excellent program for families and friends of alcoholics. This is an online alanon program.

www.ola-is.org/


Also, I would like to suggest another online support group, sober recovery.

www.soberrecovery.com/forums/friends-family-alcoholics/

Big Hugs

Molly Girl, thank you. I feel as though you have been in my head, though you were more willing to step in and take care of you brother and mother I can or am able to. Two years ago my oldest son who had been diagnosed with Type 1 diabetes at the age of seven - now35- went into end stage kidney failure and went completely blind all within three months. He began dialysis and began the process of adjusting to his new life and together, he and I, jumped through the hoops necessary to get on qualified and on the Pancreas/Kidney transplant list. He was transplanted a little over a year later and his care has been quite intensive until the last few months. I tell you this because I am literally too emotionally and physically exhausted go to my moms home to provide care. I take my mom to her doctors apps, my son, and my health isn't so great either. I spoke with my counselor yesterday and he told me how my brother could get into a hospital detox program by just walking into the ER. I called my brother, who has the phone I bought my mother to keep with her in case she had an emergency or needed help, and told him I would drop everything and come and get him to take him to detox, they live about 30 minutes away, I told him he could even think on it for an hour or so and call me back. He did and he told me I was not the only person who wanted him to go and that he would go as soon as he got all the phone calls and paperwork done for his disability application (which I filled out online with him). So, I left it at when you are ready call me. I am interested , though it may be difficult to write about, how I will know when the end is eminent for my brother so I can try to make extra phone call or two to my mom to help her understand - I have t given up but as many people in the forum and life say- it is truly up to my brother unless there is a medical emergency - and you can bet your bottom dollar if there is one and he survives I will be one force to reckon with concerning putting him in detox and forcing, if necessary, rehab placement.

Question- I have read that the liver is really the only organ in a person body that can actually regenerate cells. Just how bad of a liver condition can a person even begin to heal from? How does a person who might be able to get a transplant ( after all the requirements are met of course) live without a functioning liver in the meantime?

Post Edited (So helpless) : 4/24/2015 9:12:00 AM (GMT-6)

So, my brother fell at home on Sunday and would not allow my Mother to tell any of us....until Thursday(today). During that time he laid in the floor on a pallet. When my brother finally told his friend and his friend told us ( brother and sisters) we got an ambulance to take him to the hospital. He is in ICU right now. He broke 4 ribs, 2 of them in two places, he has blood around one lung, brown urine, yellow skin, swollen everything, can't stand to go to restroom, a pic line in his neck with another to be inserted into his hand to monitor minute by minute blood pressure. He cannot have much in the way of pain mess because his blood pressure is so low....we were told that it is a miracle he is still alive. And now we wait.

it is time for Ziff's post....

this could become the miracle you were afraid to pray for....

Hugs...Mama Lama

So helpless welcome to the forum!!!

I am thank cup I found this forum. Last night my brother struggled with berating with only one lung, and his withdrawal began in earnest. He said he had decided to get better. My mom, brother, sister and I left his room about 3:30 am so he could possibly test better. The... His heart stopped, for was performed and he was defibrillated. His heart rate remained unstable then his kidneys shut down. By 5:30 am he was basically a vegetable on a ventilator. We followed his wishes and asked the doctor to provide comfort care, shortly thereafter we removed the ventilator. My brilliant brother is gone. No more pain or battles for him. Watching someone you love die from The SLD is probably one of the saddest things one can ever have to face in life.

SH...this is a sad post. my thughts are with you and your family at this sad time. MamaLama

My sympathies to you and the family. Rest assured you did all you could've.

Ziff

I am so sorry for your loss.

Schimbare