This past summer my husband underwent surgery. He had 2/3 of his pancreas, his gall bladder, his spleen and his appendicts removed. the doctor said it looked like something exploded in his abdomen. He has massive cysts.
Since his surgery he has gotten weaker and weaker. He sleeps all the time, rarely eats and will not leave the house. Recently he has begun shaking, and speaking gibberish. He will then seem more normal for awhile. He stutters and his body movements get jerky.
He refuses to see a doctor because he believes that the doctors are responsible for how he is right now. I made an appointment for him last week and our son took him. They did blood work but didn’t say much. I am so lucky that our oldest son and his fiance are living with us and our youngest son.
Ron and I have been married for 30 years. I just don’t know what to do to help him.
Bonnie
Hi Bonnie, my name is Melisa and I am the caregiver to my significant other who has end stage liver disease. We live in Sacramento, CA. Bonnie, one thing to know is that you are not alone. Don’t give up. Be sure to find the people that will give you hope no matter where they are. This site that Jean has available to us is an excellent way to stay connected. The American Liver Foundation is a great resource for learning http://www.liverfoundation.org/ For you to find a support group in your area for you will be a huge help. We have a Call In Caregiver Support Group every Saturday at 2 pm California time. You are welcome to join us at any time http://www.caringbridge.com/visit/caregiversupportgroup Most importantly, stay connected to those of us out here that you may not know but are here for you.
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We received word from the doctor regarding Ron’s lab tests. It seems he has severe liver disease. Normal liver levels run about 65 – his are over 1200. Not sure what this means but we see a specialist on Thursday. Not sure what to expect or if Ron will cooperate.
Bonnie
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Dear Bonnie,
My thoughts are with you and Ron. Glad you will be seeing a specialist on Thursday.
How much of a strain this is on you too, not knowing what to expect or what Ron will or will not do. We are here for you, just know we have all gone thru similar circumstances in one way or another. Once you find out what you are up against, you will be able to help him, with your love and support. I know the feeling of not knowing what is ahead is frightening. Lean on your support team of wonderful family members, so you do not have to “carry” all the “weight” yourself. Many thoughts and prayers go with you.
~Char
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Thinking about you tonight, Bonnie, hoping things went well with the specialist. ~ Jean
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Dear Bonnie, Feeling totally helpless is something I am so aware of. It’s horrible and it makes any situation seem all the more worse. I was glad to read you have such a wonderful support team around you, that helps a little, doesn’t it? Hoping that your wonderful husband of 30 years gets hisblood results soon, an that will provide a path to healing.
Warm thoughts coming your way.
~Char
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Bonnie,
Keeping you and your family in my thoughts and prayers. You are certainly in a difficult spot. By some slim chance, do you or anyone in your family have any connections with a physician who may possibly come visit your husband at home as a “social call” and perhaps observe things. Just a thought. Please hang tight and know we are all here for you. What about your physician suggesting home nursing visits, just for an evaluation? Blessings!!! Susan
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Dear Bonnie, yes, thank goodness you have family around you to carry some of the weight. That feeling of helplessness is so terrible, not understanding what’s happening to Ron’s mind and body, not knowing what to do for him. And if he doesn’t trust the doctors, that puts so much on your shoulders! What a terrible thing for the doctor to say – I hope he didn’t say it in front of Ron. I’m sorry you’re going through this, you must be so scared. Once the lab results come back I hope they’ll be able to provide you with a clear diagnosis. Let us know, okay? ~ Jean
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