Info on cirrhosis... anyone???

dansbrother said...
My brother did the same thing at my mother's house, the crazy hours are part of the disease for some people. As for your mother's pain somtimes it most likely from the swelling in the stomach and the fluids pushing on body organs. With your mother's eating habits and not eating solids which is part of ESLD she will get weaker as the days go by and she will be bedridden. Sadly she will need hospice care in the very near future in my opinion with your mother no longer craving of food. Being a caregiver is a very hard job, I cared for my 44 year old brother in ESLD with a broken Leg at my house for 6 weeks and he wanted to drink beer and it was very hard for me. (P.S.) I did give him about three beers a day because one day he tried to call a taxi to take him back to his apartment and I knew that would depress my mother because I told her I would care for him BUT yes it was very hard on me. You need a calendar for "free time" away from the stress where you take turns with your husband watching your mother. I know nights can be hard with her being wide awake and you wanting silence. Your mother is going to get weaker and get sicker as time goes on and I'm talking days not months.

Hi dansbrother;

Yes; my mom was in the beginning saying "see I haven't even said anything about having a drink" until one day she asked me for a drink of vodka (her drink of choice) in which I obliged. I do not condemn people at all for giving it to them. After all they are at the end and I was told at this point it will make no real significant difference for her. However; she has not asked me for a drink since and she never even drank that one. So to my knowledge my mom hasn't had a drink since Dec 14, 2007. Before that date I dont know but I know for sure since then she hasn't.

I stay up half the night for my peace and silence it is just hard when she gets up to start her day while I am ready to head to bed for the night. I have to meet her schedule somehow but also enjoy the time to myself at night. I do after all also have children to contend with all day. I am so lucky that they are the worlds greatest children and are doing everything in their power to help out and not to mention that my oldest is old enough to care for my younger too as well.

Easter weekend so I really must attempt at catching some ZZzzz before the Easter bunny arrives.

Thanks again. Confussled.

Hi, I thought I would interject that it is common for people in end stages of various diseases to have hallucinations. In most cases they revert back to an earlier time in their lives and relive a memory or event. Thats why so many people in this situation either ask about someone who has already died or they actually have a conversation with someone who is not there. In this circumstance I would be reluctant to try to persuade them that what they are seeing or hearing is not real. That is of course provided that they are not harming themselves or threatening harm to anyone else. Personally I think that these events occur in the end stages of life as a way of coping with their impending death. I could be wrong but that's what I think happens as the confusion increases so do the hallucinations and delusions. For me it's OK to let them be this way. If they indeed are reliving prior events that were nonthreatening to them or that they took pleasure in I don't see the harm. I for one would like to know that they are at least having moments of peace.

dansbrother said...
Hang in there because Monday is almost here and take her to Emergency Room if your dear mother's brain fog gets worse, You need a Hospice Nurse and a Hospice Nurse Emergency Contact. Blessed are the caregivers and their families, this disease drags your soul and heart and spirit through the thorns before it gives you one second of rest ans calm.

Her wishes are that she cannot go to any hospital for any reason so I have to fulfill those wishes.
Unfortunately doctors offices are not open until Tuesday so I have to wait until then to phone let alone when we can get her in. I am hoping they will see my anticipation and get her in same day.

JohnCT said...
Hi Confussled,
I'm sorry to hear about your mother. You are in a difficult situation and I wish you well in dealing with it. Have faith and know that you are not alone. I am a new member and have read a great many posts, leading me to understand the love and support that we can provide one another when we try.
Thank you, members, for giving so freely of yourselves. The good you do is obvious.
I just wanted to suggest that you do not minimize the abdominal fluid retention, Ascites. In my case I waited too long and the fluids became infected, causing Sepsis, a very serious internal infection. The other aspect of Ascites that hit me was the pressure buildup, making it difficult to breathe and placing stress on the other internal organs. I now have it under control and it's one less thing to worry about.
Your mother is lucky to have you watching over her -- bless you both.
It's Easter Sunday, expect a miracle.

Warmest hopes for you and your mother.

JohnCT

I know when my mom was initially hospitalized (when she received her diagnosis) she has an infection too. However; they did nothing about the fluid. They have her on water pills (two different kinds) and still the fluid keeps building.. They haven't been able to get it to go down. It is quite a nuisance because it minimizes her movements; prevents her from wearing socks and shoes and even her clothes are an issue. I have debated on getting her maternity clothing; giving the stomach room to grow!

Hello Confussled, I am so sorry that you are going through this. With
your mom not going to the bathroom in over 16 hours, is really not a good sign. Her organs maybe shutting down. I commend you for following your mom's orders. I know it is not easy. In fact it is probably the hardest thing that you have done for her. What you are doing for her is the ultimate sacrifice....against your better judgement ....following her wishes.
Keep telling her how much you love her. Because somewhere in her confused state she knows just how much you do. Spend as much time with her as you can.

My thoughts and prayers will be with you and her.............

I stand firm on not sending her to the hospital. I promised her, while in sound mind that I would never make her return to the hospital unless she was in unbearable pain that she needed medication and wanted it. We discussed; her, the doctor, my husband, my kids, and myself, that she would remain at home where she would hopefully slip into a coma and die peacefully at home. I do understand your feelings dansbrother but this has been preplanned to go as it is and I will abide by the wishes. It was fullly understood even for the kids to not call an ambulance etc under any circumstance. She is terminal and why drag it on with medical intervention when a person does not want it. Thank you all for your kind words. I'll keep checking in. I am so thankful right now that I joined this forum; I look forward to reading each post as they arrive. thank you. I'll keep you informed; today was have an imaginary baby... nosebleeds...finally a bathroom break at about 17 hrs ... Thank you again. Confussled.

Hello All, Everyone has to handle their situation the way that they see fit. There's no right way or wrong way. It's just trying to get through a very stressfull situation with your loved one's best interest at heart.
What I did with my husband's dying may not be what someone else would do. But for me it was right. And what ...say "B" did with their wife is not I would do, but for "B" that was the right thing to do.
Death is a very emotional time for any family members. You just get through it the best you can. And when all is said and done you will know that you did the best that you could do, given the circumstances.

Thoughts and prayers for all who are or have been dealing with this awful disease..............

dansbrother said...
I'll respect your mother's wishes, I'm sometimes hard-headed and even tried to send my own brother in the nursing home back to the hospital for more units of blood and the doctor and the hospital told me they would not accept him because he was terminal and that was the coldest day of life.

It is one's own selfishness that does that. I have once not obeyed her wishes and rehospitalized her only to find that when she go to the hospital...they sent her home. She does not want to be here and she does not want help was all they had to say to me. After that I decided it was in all our interests to obey her wishes. It is the hardest thing I have to do because obviously I want to be selfish; i want to keep her here with us...

Well we made it to see a doctor today, not our regular doctor but a doctor. He increased her water pills to help with some of the ascites. He is doing blood work before anyone can make any decisions as her last blood work actually turned out quite nice looking so he said he is unable to follow those. WE have a home lab coming to do weekly blood work and they will then consider putting her on lactulose. They have been avoiding that because of 'other' problems and the possibility that it could do more harm than good. Anyway there is not much one could say without blood work being done but they are testing her ammonia levels and kidney function and she has been given some diet changes. No protein and no salt.. well minimal of both which we already do. I and my son have kidney disease so I can't imagine having any less salt than our family already does! So now we wait...

Confussled, I'm sorry to hear that your mom is deteriorating. It is so hard on you and your family. I think by your brief descript ion of events that she may not "rally" like she did after the hospital. You never know for sure though as everyone is different. Like you, I would be reluctant to get too hopeful. Has Hospice gotten involved yet? It may be a good time to get them involved in her care as it will take some of the burden off of you. Keep us posted OK? My thoughts and prayers are with you and your mom.

Caregiverx3<1 said...
Dear Confussled,
You don't know me, but I see you haven't posted today. I can read that you are going through a hard time right now. My father did the same thing that your mother is doing now, hallucinations or the truth. I don't know what to call it either. I don't care to put a name to it.
Dad saw his Mom & Dad and he also saw a young girl and a lot of 'doll' clothes. When I asked my Mom about the doll clothes and young girl, she told me that his Mom had a baby girl, but she passed on after just a few months. I supported Dad during his seeing these people. He kept saying, "Don't you see them?" My Dad was 77 years old. He said they were getting ready to take him home. I'm not lying to you. This is what happened. Although the whole experience was new to me, I accepted it and let it give me peace.
If this is your first experience of going through this, please post soon, if you can. You don't have to go through this alone. There are so many people here that can talk to you. Even if it is just the littlest thing that you are concerned about, type it out. We all wish we could be with you, to help you. Be strong Confussled.

Carol

Hi Carol; yes the hallucinations are of a baby being in the house; my neigbhour that she only knows by name but not to see has been on the front pages of the newspaper and our papers headlines the other day read "power line through park?" and she read it as "plumber falls from plane" So there is plenty of confusion happening.
I am finding time wise; i have less and less of it each and every day. Because of her weakened state we forced her to get up more than usual and get some "exercise". She did not babble to me at all today but... I cannot speak for my husband. We are feeding her foods to help get the potassium levels back up as we await the doctors phone call but for now I can say that she has definitely been a little stronger and a little more alert today.
My mom does call everyone by the wrong names and often calls my husband by my dad's name. (who has also passed on)
So this about sums up my day today. I have just been having some deep thinking time and also got out for some 'me' time today. =)
Thank you for writing and caring.
Confussled

Confussled, I am so sorry that things are so tough right now. My father in law who died of liver cancer 20 years ago did the same thing that Carol was talking about a few days before he passed. He would talk to his mother and father and other family members that had already passed on. I am glad that you have been able to grab some "me" time.

You are still in my thoughts and prayers.

dansbrother said...
This is good news, your mother seen a doctor, I was worried about your mother and you. My brother use to really complain about the lactose medicine when he stayed at my mother's house, he hated the taste and she mixed it with soda pop to "try" and mask the taste. He had to take it three times a day. He use to tell my mother in his grouchy mood, "Why don't you just strap me to the toilet" and she would reply "Don't put any ideas in my (her) head"

I dont know why but the doctors are reluctant to start her on lactulose. I, at this point have no clue as to why, they just don't seem to want to. I intend on asking our family physician the next time she goes in to see her actual doctor as this time we only got to see someone filling in for him.