How do I do it? How do I take care of a brother that doesn't want to be taken care of.

My brother is sick.   He is/was the type to never see a doctor.  The personality of a lovable puppy with a loud bark, loves to laugh, enjoys company, loves his family.  Six feet tall, burly with black wavy hair and a dimple on his chin that none of his siblings have.  My mom's nickname for him is Charles Ingalls.  He was recently hospitalized and came out with several indicators of cirrhosis but did not care to elaborate.  Lactulose, bp meds, SOB, off balance, coughing up sputum tinged with blood,  slow to react, eats one meal a day states gets too full.  Mild Jaundice noted. Ammonia levels 75 ish.  What can I say, we love him.   He will let us love him, but not care for him.  I don't think he realizes that he is very sick.  I want him to have a better quality of life from here on.  He is the single parent of two children.  Lost his wife when they were young.  Never been the same since.  We cannot direct him, suggest to him, or tell him anything.  He is so stubborn.  I on the other hand, am the one in the family that everyone calls if they have problems, or need answers, or advice.  Even my mom relies on me for input.  My mom is making it known that when he is too sick to care for himself that he will not be surrounded by or taken care of strangers.  That we as a family will guide him.   I don't know if I am strong enough, I am going to try for him, for her and me.  I guess my statement is:  I have several siblings.  I want to make this as smooth and least traumatic for everyone.  I know I can't be everything.  What can I be doing right now?  How do I get through to him?  I want him to take better care of himself.     p.s. he is a heavy drinker.

I was surprised to see a response this morning.  I'm glad to get any kind of input.    Thank you.  I will let the family know in just those words.  When he is ready he will let us know.  Keep the doors of communication open.  It's someplace to start.

Helper, I just want to welcome you to the forum.  Pink Grandma has pretty much said it all for me.  This includes his drinking, which is a BIG P.S., by the way.  He won't stop until he really wants to or becomes too ill to drink.

I think your screen name is very telling.  But you cannot help all mankind, and it may be that you cannot even help your brother.  One thing is sure, you cannot do it all yourself.  Let your siblings know that when the time comes, you expect them to ALL step up and participate in your brother's care...whatever that entails, even if it's just cooking some meals or doing laundry for him...or giving you a breather.

Look in our resource folder for the educational threads and learn everything you can.  Knowledge is power.

Helper, do you know what kinds of meds he is taking and/or for what?  The SOB could be from ascites (fluid in the belly that pushes up against the lungs.)  They can also get fluid in the sac surrounding the lungs.

If he has lost his job and has been taking any common Pfizer drugs, there was a piece in the paper today saying they are giving meds FREE to patients who have proof that they've lost their jobs since Jan., lost their insurance, and have been on Pfizer drugs for at least 3 mos.

You have no control over his drinking, I can tell you that (as a sober alcoholic for over 22 yrs.)  However, you're going to need all that energy down the road so don't waste it on things that will do no good.

Hi HoM

It's really hard watching someone you love do harmful things to themselves. I have a twin brother, we both just had our birthday Wednesday. He lives in another state, but I think of him all the time. Not always fondly, but always with love. Your brother has a lot of things going wrong for him right now, but from your posts I know he has one thing going right: your love. Hang in there, help him when the time comes.

Joan

Hospitalization times two since last post. First, was overall not feeling well, went in stated Glucose was high and B/P. That's all he would tell us. Currently in the hospital, elevated B/P that they are trying to bring down. Hyperglycemia, and I am guessing Ascites. A nosebleed that won't stop. He will be seen by specialists tomorrow. I can't get a solid answer as to how he feels. He is jaundice and SOB at times. He continues to drink. His perkiness and quick to move is gone. He recently was married. It's sad to me, but he either doesn't realize he is very sick or he doesn't care. I am trying to prepare myself. But, when I think about it my heart flutters and I feel like my world will fall apart when he has that final realization. I need to know how to put pity aside, or can it be considered pity? the way I feel. I don't know. Tomorrow is a new day. Today is gone.

I know in my mind Hep93, (Connie) that there is progression. I am having a hard time seeing and hearing his voice like it is. I am grieving for the man he once was. He was/is? a very kind and caring person. He often found himself speachless when confronted with awkward situations in which hardship was associated. I am an LVN, I have always worked in Geriatrics. However, even the elderly die of cirrhosis and hepatitis, as you are aware of. My brother is not aware of the many hurts to follow. I feel that in his mind there is only one thing that makes him happy and it is being under the influence.

His new wife is a Social Worker on an Indian Reservation. I have not met her yet, as I am on the East Coast. They on the West Coast. Two or three days ago, she talked him into going to the ER after 3 days of nosebleeds. The following day he signed himself out to work, for fear of losing his job. After the work was done he was reluctant to go back and with some convincing he did go back.

I spoke with his wife over the phone to ask if there was anything I could do for her to make her more comforable. She is camping out on a cot next to him. She was very informative. Stating his ammonia level was very high, Clotting was practically nil, High B/P that they were having difficulty bringing down. Hyperglycemia, Abdomen distended, and he is agitated, confused, delusional. This a.m. my mother was contacted by the Hospital, he had managed to leave. They called law enforcement to start a search. One hour later, he showed up, two well-doers dropped him off in the driveway. He wore hospital pajamas and sneakers. He said he didn't like it there because the Director of the YMCA was not too friendly and he spoke of a newborn sleeping in his bed.

After he was returned to the hospital by his wife who was home at the time showering. They called stating an I.V. needed to be started and he was being non-compliant. My mom was a distraction while it was done. My brother is 44. To the young that age is old, but to myself (43) that age is young. They have been sedating him with sleep aids during the night, ativan & haldol for the agitation, valium due to they thought he may be having withdrawals from the alcohol. The lactulose is being given in high doses and his wife said he is getting regulated.

I know I am babbling on, but i really need to say this to someone. I am glad his new wife is there. I being exposed to what goes on in such scenarios am aware that an advocate is very important in any clinical situation with this diagnosis. I spoke to him today and was horrified to hear his voice. He was heavily sedated to the point that he was breathing through his nose and mouth and his respirations sounded very low. He could not follow my questions or when I told him that i loved him. It was like he was having a conversation with another person on the phone. Out of the blue every other sentence, he would say I love you douz. Which is what he calls me........

I love him so much and I don't want him to waste away this way. He does have security posted outside his door, and his wife spoke of another level if the agitation continued, as told to her by the attending physician. I dared not ask, but I feel that they will induce a coma. Could this really happen? Please tell me how to cope? I am a wreck.

Hello helper,  my brother is now sick with cirrhosis and emphysema.   I am already grieving for him as I know that he's not going to survive this.....I feel helpless and extremely sad.   I wish that he didn't do what he has done to himself...... but he did and now we have to deal with it. 

I am trying my darnest to make what ever time on earth that he has left as pleasant as possible........I go see him everyday and make sure that he is getting good treatment and I take him a Pepsi and candy.......I know that it isn't good for him but it brings him joy.  His face lights up when I walk into his room.......that brings me joy.  He was my protector...........now I am his.........

Since your brother has been hospitalized a few time now...........Have you tried to initiate the conversation about his illness?   If you feel that he is not being straight with you maybe now you can tell him your suspicions.........back it up with what you have learned about liver disease.  Or talk with his wife.  

Good luck and do take care of yourself as Connie has said..........The constant worrying takes it toll.   

Thoughts and prayers..........

 

My brother will agree to everything that you preach and want him to hear. But when you walk away, or while you walk away he is on his way continuing down that road. His new wife stated that he conveyed to her his intention to get better and that it was going to be rough, prior to the wedding he told her this. He wanted her to know up front.

She went ahead with the ceremony and insists and reassures him that she is going nowhere. I am so greatful. When I first realized he was sick, I grieved for his chance to have intimacy at such a young age. He lost his first wife many years ago. I didn't think he'd ever have another wife. Someone's prayer was answered when he found her. I am forever greatful that he can have the security that comes with being with someone you love.

Dear Timeless, thank you for sharing your experience, thoughts and insight. I am very thankful.  Everything you have written are answers to the questions I have that float around in my head at night. It has been a tough 4 days with his latest hospitalization. You are the same age so I know that you are on his timeline in that sense. I do hope, that the realization you speak of comes after this bout.  But, in the back of my mind I feel it won't happen until he is no longer able to perform the activities of daily living, then there will be much sorrow for him. I am glad you are able to share your journey with someone you love. I can see my brother in a normal life, it is that vivid. Peace within I know comes in many forms. Your's is the ideal. My brothers ordeal right now is to leave alcohol alone. He at present is fighting withdrawals in the hospital as we speak. It's rough on him physically and us, his family emotionally.

My brother has two children. But, it has been proven that children with an alcoholic parent have been exposed to so much that they too struggle with daily life decisions. They become people pleasers and in no way able to approach problems, solve or deal with them accordingly. The constant turmoil that any child exposed to this causes despair and unhealthy thoughts with no where to turn. They are, unaware of the turmoil in his life right now.

You and I are in the same boat, we will watch our brothers, someone who is very sick continue on this vicious and cruel journey.

I see the boy who ate with his snowsuit on because he was afraid he wouldn't be ready when dad was reaching for the car keys. 

I look at him and see the pre-teen who carried a comb in his back pocket to make sure his hair was always neat.  

I see the man, who bought a suit for a wedding 20 years ago.  A wedding in which he would give his sister away....

I thank you again. (Helper of Mankind)

I am glad that your brother seems a little better.  Alcohol withdrawal could very well play into the hallucinations, etc.

If your children are old enough to understand, I would let them know that your brother is ill and that you are feeling sad about it.  If they ask if he is going to die, say you don't know but that you hope not.  That should be enough information for young children.  Otherwise, they may think they did something themselves that is making you sad.  Children are good at blaming themselves for things they don't understand (like divorce.)

Your brother has my prayers for continued improvement.

Hugs,

Connie

" I am wondering if this confusion is a reason for the attending physician to recommend 24 hr care in a supervised facility?"

My guess is YES.  If he's trying to "escape" and having delusions and hallucinations, he would need 24-hour care.  Also, if they are worried about his breathing at night, he would need someone through the night.  Is he elevating the head of his bed and/or using an extra pillow when he sleeps?  If not, suggest that.

Hugs,

Connie

Good Evening everyone! I have read other threads on this day all threads regarding encephalopathy. My sibling has Cirrhosis of the Liver. In the beginning when he received his diagnosis I began a journey to obtain all the information I could get on this diagnosis. I know the stages and most of the complications. This site has been very helpful and I love the internet and google. Although they are extremely helpful, I still feel that the quality information comes from all of those who are living this terrible nightmare.

My sibling has been under this cloud (diagnosis) for approximately 3 months. During this time he has been noncompliant, continuing to partake in alcohol. He has had three hospitalizations. This most recent being the worst. I have been enlightened by another post of a member who has a husband looking for info on the encephalopathy complication. During this past hospitalization my brother had: elevated ammonia, hyperglycemia, hypertension, epistaxis times three days, headache that wouldn't go away, poor gait, confusion and passing blood rectally. During his 2nd day of this hospitalization he went missing, local authorities were enlisted to locate his whereabouts. My mother was contacted and told about the elopement/AMA. After she hung up the phone, my brother got off a car at the end of the driveway in hospital pajamas, and was very confused. He thought he was at the YMCA and that they were putting babies in his bed.

He was returned to the hospital, guards were posted outside the door, sedatives, antipsych & antianxiety meds were administered for the next 24 hours. During the duration of his hospitalization I called nightly after midnight to check up on him. I found out that the nurses were giving him PRN sleep aids without him asking or his wife asking. She stayed with him the whole time. There were times where he was not confused and didn't ask for these meds. These meds ontop of the existing state of confusion we thought were causing the agitation, poor gait, SOB he was experiencing and the confusion. To get to the point. Not once did I think about encephalopathy. During the 3rd night it was observed that he was having episodes of apnea. They ordered a sleep lab. I inquired about O2 sats, and CO2 blood levels. Neither were being done. He also had a psych consult. Amid all of the going ons and the labs, nurses and doctor not once mentioned encephalopathy. All of the symptoms above fall into everything I have read of encephalopathy.

He is home now after one heck of a storm. He still gets agitated, moreso than ever. His doctor called today and has requested him to have an EMG, why we don't know. Possibly to confirm encephalopathy? At what point does/will the doctor say "done" cannot do anymore or "that hospice is resource that should be considered at this point" Since his diagnosis is so recent and he has had, it seems severe hospitalizations and we are where we are, how long before he is in real trouble? if not already. Does the encephalopathy diagnosis continue as in, progressive, no reversal? Is the encepalopathy an indicator or precursor to active liver failure?