Hello Meesha and welcome to HealingWell. I am so sorry that you and your sisters are dealing with this.........Can your dad go to a Hospice House........We have one here in my city........where the patient goes to live and the family and hospice take care of them to the end. You may want to ask them about it.........My sister-in-law lived in one in the Seattle area, for a couple of months before she died. They were wonderfull. Either way Hospice is wonderful. Not only do they make the patient's end of life more comfortable they assist the family with their fears about the upcoming death and give them the support that they need to deal with it. Not only did my husband have nurses and doctors coming to our home, I had a social worker and a volenteer coming to assist me through it.
As for your stress.......you need to manage it the best way that is for you......for me I took little walks a number of times a day.....it was just around our property but it helped. You need to do things to take your mind of your fathers situation even if it's only for a few minutes....read a magazine, take a bubble bath......what ever relaxes you.........It's emparative to find a way to de-stress yourself occasionally.
Take care and come back.......this site is wonderful for patients and caregivers a like.......Thoughts and Prayers...........
Meesh, my heart really goes out to you and your sisters. I am glad you found us. Please do ask about a hospice house in or near your city. That might be the best solution, if there is one nearby. Otherwise, I know my friend's ex-g.f., who ultimately died of cancer, had hospice nurses who took 12-hour shifts at home, so someone was always with her. At that point, she was basically "out of it." A hospice nurse was there when she died at 2 AM. Hospice is really wonderful, not only for the patient, but also for the family.
Your feelings are quite normal, but I hope you can come to terms with your anger. Perhaps it will help to acknowledge on a deep level that alcoholism is as much a sickness as diabetes. Take comfort in the fact that your father finally quit, even though it was too late, and will be dying sober.
Please come back and post and let us know how you and your family are doing.
Hi, Pam! I recognized you from Chronic Pain. Thanks for your personal input. My mother was an alcoholic who drank heavily until she finally went into a NH. So I can empathize with you. However, I became an alcoholic, too, though I've now been sober for 22 1/2 years. There is help and hope for those who want it. My mother just never did, and many, many don't...which is hard for me to understand.
Hope your pain is manageable today. This cold weather is kicking my behind!
Post Edited (hep93) : 2/26/2009 9:18:53 PM (GMT-7)
Meesha, when my husband went on Hospice they immeadiately put him on liquid Ativan (sp?) and liquid Morphine. The Ativan helped to relax his body so that the morphine could work. If your father is not getting enough relief from the morphine, ask about the ativan. My heart goes out for you. I believe I cried more in the last year and half than I have in my life. But you know what it didn't hurt a thing, cry all you want, it's something a person needs to do. My prayers are with you and your family.
Helen, it's good to "see" you. How are you doing?
Connie, I making it. Doing half way decent, trying to get paperwork done and thinking about what in the world I'm going to do now. I'm 48 and I have start my life all over again and fortunately for me I have great kids and friends. A warning to caregivers, time is still passing in the world. I saw a lady at church and asked her how her new grandbaby was and she told me her 2 year old grandbaby was doing fine. I could not believe how much time had passed, it goes by and we don't even realize it, because we are living so much of time minute by minute.
Helen, that is so true. When we are involved in literal life or death struggles concerning our own health or that of loved ones, we tend to lose track of time in the "real world." I just realized the other day that my oldest granddaughter is turning 28 next week. Where did the time go?
You are fortunate to have friends and family to support you as you start on a new journey of your own. I cannot tell you how many times I have "started over" and didn't have that support...but each time I became stronger and went further. I think that strength helped me tremendously in my fight with liver cancer. Remember the old saying, "What doesn't kill you makes you stronger?" I'm here to tell you that it is true. But please allow yourself enough time to grieve. Don't feel like you have to do everything "right now." Take it slowly and lay a good foundation. You know you always have the support of your "family" here.
Thoughts and prayers.
I don't think I want to be any stronger. Its amazing how the illness becomes your life. I had actually forgot what normal life was like. Everythng we do eat etc. revolves around this illness. Fortunately my husband quit drinking the minute the word cirhossis was mentioned. Thank god. It has give us two years so far. My prayerss are with all the caregivers that are going through this nightmare.
JoAnn, I know there are times when we think we can't possibly handle anything more--and then something else happens and we do handle it. We have enormous stores of strength that we don't even know are there until we are forced to draw on them. I was thinking last night about my 7 major surgeries in 5 1/2 yrs. and am amazed that I got through them all--and with no real support. I am very grateful to be having a "break" right now. I guess my HP knew that I could not handle one more thing, so I've been able to relax some in the past 18 mos., although I am frequently being checked to make sure I don't have cancer of one kind or another and that my liver is holding up.
I am so lucky to be alive.
You are so right. I feel like such a baby when I complain. You have been through so much more. I guess I just needed a reality check. Thank You
JoAnn, we are all entitled to complain and vent occasionally. I guess what I was trying to say is that you are stronger than you know. I think it's more difficult being a caregiver than a patient, so pat yourself on the back, too.
Hi this is the first time I've posted anything, but I've been reading many of the posts for the past 2 months. My uncle who is 53 was diagnosed with End Stage Liver failure because he was an alcoholic. He has been homeless for over 6 years, by his choice of the alcohol. We received a call about 2 months ago that he was in the hospital and we were told his diagnosis. My family(most of us) have completely changed our lives to help him live out the rest of his life. Hospice has already started helping with most of his medicines and daily help, but his liver doctor (whose never seen my uncle) has discussed doing the TIPS procedure. Our family nor hospice can understand why they are wanting to do this, especially with the complications after the procedure with the ammonia levels and the more other things. The worse part is that he has shown us that he doesn't really care about his life. We have to treat him like he is a kid, recently my mom found a bottle of her perfume (a twist top) and a pair of her reading glasses hidden in his shoes. That same day they went to the DR's and he stole the alcohol swamps from the bathroom at the dr's office and tried to hid them from the Dr and my family. He has never really been right, but now it is worse because he's living at my mom's house. She can no longer work because he must be supervised at all times, because he can't be trusted. He has also changed his addiction from the alcohol to smoking. He smoke an entire pack of cigarettes in less 20 hours. He treats my mom like his servant and nothing is ever the way his wants it. At this point we are at our wits end. Maybe I just needed to vent, but I'm hoping that someone can help give answers to all of this. This is so hard on our entire family, we can no longer eat as a family or even hold a private conversation without him listening in. He has red splotches on his face and he's constantly picking and digging. I know that this is from the toxins in his body, but it is horrible to watch.
When anyone tries to talk to him about his health or anything serious he'll talk about fishing and things from when he was in his teens(probably the best years of his life). Hospice and asked about his 5 wishes and 1 is that he wants to go fishing and the other is the be berried. His health is so bad that fishing is not possible and we can not afford to bury him. He has never been in the military, nor held a job where he's paid taxes. I feel like he is treating this as a vacation, and yes I know he's dying, but I do not want to jeopardize the health of my mother because of him. At this point I'm scared that all of this is taking a toll on my mom and her mental state.
I guess I'm just needing support and people who understand to talk to. Sorry to complains about my issues, I just don't know when this will ever end!
Thank you so much for your kind words and suggestions. We are taking as a family on what is the best thing for him. Yesterday they had the appointment with the Liver Specialist, (not sure of the medical name for him) but he still hasn’t seen my uncle, it was just a nurse. But my uncle has told them that he doesn’t want the surgery if it is going to make him worse and he’s just ready for the pain to stop. They did blood work yesterday and then they called this morning to say they want to admit him into the hospital for observation and tests before the procedure scheduled for tomorrow morning. But yet, we still have not spoken with the doctor to determine if this procedure is the right thing to do or not. There are 3 different doctors involved and now there is a 4th, so that gets really confusing trying to figure out who really understands the whole situation and whose looking out for the best interest of my uncle. So I guess that for now everything is up in the air.
This does give my mom a break and hopefully get time for herself. On another positive note, our social worker from hospice thinks he’s found someone to take my uncle fishing! I really hope that we can at least fulfill one of his wishes.
Sunny, "liver specialist" is known as a hepatologist.
I hope that your uncle has no complications from the procedure and has a good recovery.
My thoughts and prayers will be with your family. Please keep us updated.
“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."