I just returned from a work related meeting where I got to advocate for one of our adult developmentally disabled folks. They were reading off his lab results including low platelets and eleveated liver panel. My red flag went up. It turned out this man was recently diagnosed with cirrhosis but nothing was being done for him except to prescribe Lasix. I asked that Tylanol be removed from his orders and that Lactulose be added and then that he see a GI specialist or Hepatologist.
Gene and I have been married for 43 years and I cannot visualize life without him. He is my life. I thought I was going to loose him right after his cirrhosis was diagnosed due to all the medical incompetence.
But he slowly improved and I started seeing a tender and appreciative side of him that I hadn't tuned into before he became ill. That allowed me to put aside my hurt when he said cutting remarks or misunderstood my intentions. I realized it was the encephalopathy; not Gene. I was then and am now simply not ready to let him go. I know the day will come and I pray I am strong enough to make it through the frightening times ahead.
It was God's grace that gave us time and allowed me to remain positive through smiles and tears. I decorated early for Christmas in December 2004 but wasn't sure Gene would make it until then. After Christmas I added Valentines hearts to the Christmas decorations as I wasn't able to let go of what I thought was our Miracle but last Christmas together. Then Valentine's Day led to Easter and Spring decorations, fall/Halloween and again Christmas/Valentine's Day this year. The more time we have together the harder it becomes to face the future without him.
Gene is also a very spiritual person and has been on a quest for self-realization for many years. He does not complain and is generally supportive of my decisions. Shortly after his Cancer diagnosis, Gene spent hours and hours into the night creating the most lovely scrap book honoring our life together. He expressed his love for me through his book and it's saying and photographs. Wish you were all here to look through the book; it brings tears to my eyes every time I open it.
Valerie, I don't know if I answered your question. I didn't set out to become closer to Gene through his illness; it just happened. It was simply an act of LOVE and I would have it no other way.
Yes, somedays I get angry and frustrated and even raise my voice to Gene. But I do not want to waste the most precious gift of time together that God has given us. For when I feel his arms around me I know how beautiful this last three years have been. I would change places with him in a heartbeat if I could. I simply have let go and allowed Miracles to happen.
Hi Barb.Your post was so beutiful I can't help me filled with emotion & my eyes filled with tears. This kind of love you & Gene share I could feel it as I was reading,I can almost visualize your scrap book & I thankyou so much for sharing this beauty with us.It appears to me you wear the wife hat more than the caregiver hat. Miracles certainly do happen.Like you said every minute with our loved one count. That advice you gave about that cirrhotic patient was excellant! I was asking about how you & Gene held your love & marriage together because so many of us struggle with this when are lives are changed with liver disease. You are a very special person Barb. Give my best to Gene for me. You 2 have something rare & preciuos there. Don't ever let the encephalopathy rob you of it. HUGS. My thouts & prayers are with you both.later....
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there."
BarBara, You and your husband are very blessed to have each other. How thoughtful of you with the decorations and him with the scrap book. I had a day where i raised my voice to my husband this week. He told me last night he that he have given what I said great thought and understood my feelings, but he didn't know how to show or express his feelings since he has gotten sick. He had tears in his eyes, and said "I want you to know I love you and tell me what I can do to make it better". Of course the tears were in my eyes by this time, I told "I need to hear I love you, I need kisses and hugs". What struck me tonight is I was looking at him, admiring his courage for fighting this disease and I had him on the defense. He said "Okay what is wrong with me, your looking at me, do my eyes not look right to you?" I realized, I have not been wearing my wife hat lately. I have been too busy being the nurse and the scheduler, and the mom. I think, I understand how you and Gene have grown closer in your relationship. You are letting each other know what your needs are, and it is the simple things that count the most. I have to thank you for opening my eyes. Things are getting better here and they are going to keep on getting better!!! Bless you!! Have a Great Weekend!! HUGS and PRAYERS!!!!
Hi T,& Barb,It's a beutiful thing when we get our eyes opened & see things in a new light again. It's like being lost & then found again. Hugs to you both. later...
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there."
Today was one of those days when I felt exhausted and couldn't get myself to do anything. It gives me a better appreciation of what Gene and others with liver disease must deal with each and every day.
Gene was more active than I was. He has been working on a Valentine's Card for me. My sweetie is so creative; in addition to the scrapbook, he enjoys making up special cards that are like no other I've ever seen. Can you believe at one time I didn't appreciate them.
It wasn't until I was confronted with losing Gene that I realized what a special gift he was for me. And now I cherish every moment we have together. It takes everything I have not to smother Gene with attention. Over time, I see that he needs his space and time to himself. In my heart I know he is doing this to make it easier for me to go on with my life when the day arrives that I must do it alone.
The scrapbook had photo of the two of us together or Gene and his family on one side and me and my family on the opposite page. When he finally completed the book, he had a picture of me smililng and wearing a colorful dress and he was nowhere on the page. The heading said, Walk through fear. I asked him if the message was as I interpreted it; my continuing after he was gone. When Gene said that was exactly what he meant, I told him I wasn't ready for the final chapter. The dear that he is, Gene totally redid the end of the scrapbook that reflected are life together instead of our life apart.
This was not what I intended to post. It just came out. The forum is a safe place and I feel I can pour my heart and soul out.
I have gained a new appreciation of what Gene is going through day in and day out. Somehow before coming to the forum, I believed that life was close to normal on Gene's better days. But after reading everyones posts, I realize that one cannot get away from liver disease. It is always ready to pounce again. I've known that Gene could die at any time for the past three years but somehow it seems more real now. And this makes me more appreciative of the time we have shared and each and every day. God has given us a miracle. There is the Miracle that Gene is still here and the Miracle that affords me a better understanding of what he is experiencing and what my friends on the forum are experiencing.
When I laugh, there is more joy in my laughter, and when I cry, there is more intensity in my tears.
I am looking forward to the Rose Hotel. We leave Monday afternoon and it is another Miracle each and every time we return.
Hi Barb, you are such a very special person & we are all fortunate you are here posting with us.You gave me some additional insight to about the smothering. Sometimes this is how I feel too when my husband gets too invoved with being a caregiver.Sometimes he forgets he's also my man first or supposed to be. Thankyou for all you shared. It was trully inspirational.Yes the forum is a safe place to be.Everyday trully does count. This life is full of miracles if we endure. One day at a time & be thankfull for what we have. I pray Valentines day goes well for you & every one here.Its always a real pleasure talking to you. Thankyou for your support & contribution.. Love& hugs. later....
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there."
I have not visited the Forum since you joined. My sister passed away at the end of January and I have not had the inclination to write or read posts. Enjoy your Valentine's Weekend. Thank God everyday for the extra time you and Gene have been given. I too have cirrhosis, the result of autoimmune hepatitis, but fortunatley, I have an excellent heptologist and local GP and the medication I am taking is working well, keeping the disease under control.
My prayers are with you and other Forum members who are suffering.
I'm so sorry for your loss of your sister. I'm at a loss for words but my heart and prayers go out to you. I lost my sister to lung cancer about eight years ago and still struggle with her absence.
I'm glad you've returned to the forum and even happier to hear that your cirrhosis is stable. I'm looking forward to hearing from you as time goes on. It's important that you take care of yourself and also honor every day; this can be done whether one is laughing or crying.
Thank you again for your kind words. I also am learning and growing from your words of wisdom. I realized I look first at Gene as caregiver and then as beloved wife. Hereafter, I will try to make every glimpse through the eyes of love; first as a lifetime partner and friend and then as protecter/caregiver.
Hi Barb, I pray every one here follows Your example. I know it's not easy for you as a caregiver. When I speak I speak from the patients point of view. That's where both of us come to realization.I hope & pray every one here reads your post here. It's a real door opener. Maybe it will put all of us back on the path of having at least part of our relation ship back with our partners that has been lost to us for so long on both sides of the fence. Thankyou Barb.Maybe now we can build new memories to carry us thru life , & love will be found & renewed as it should be. Thanks again Barb. I wish you a beautofull day as well & you are a beutiful person. God Bless. later....
Valerie
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there."
We're off in a few hours for the Rose Hotel to creat new memories and to enjoy our special time together.
Gene already informed me I don't need to bring along the Lactulose. He put our Polaroid camera where we won't forget it
I was touched by your last post, Valerie. You have great insight and wisdom. We can never put ourselves in another's shoes, but can respect and honor their path. The greatest gift we have is to be open to change and to embrace life whatever is on our plate.
There are times when I forget this or become lost in the pain and distress of the moment. Our lives are not what we would choose for ourselves if we had the option. But when I see my husband's smile or feel the warmth of his body I would have it no other way.
On our second visit to the Rose Hotel for our Anniversary in December 04, I walked into a small botique shop where I had shared our Miracle almost two months earlier. The owner's face lit up as I walked in the door. She said, "You made it" and went into the back room to find a small book she had for me. The title of the book was, "Let Go; Let Miracles Happen."
Hi Barb,It is so easy to get lost in the pain & illness. I hope my husband & I can overcome As you & Gene have. Yes Miracles do happen every day.Life isn't always easy or fair but if we can endure ther is always a blessing at the end of it all. I think in addition to God acceptance plays a big role in it because to me being able to accept means being able to deal with it & that means being able to fight the disease instead of each other. Also respect and remembering we are partners first in our relationships, to be as close to one another as the disease allows.Then caregiver & patient. I truly hope you & Gene have a wonderful time on your romantic getaway. You both deserve it. Love & Hugs to you both. Can't wait to hear all about it when you get home. later....
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there."
Barbara, I know you are at the Rose Hotel today having a wonderful time. Just wanted you to know, Mark gave me wonderful presnt this morning. He played one of our favorite songs and we danced to it. You have helped us open a new door. Thank-you!! HUGS!!
Thanks for your support and your interest in my posts. I cried tears of joy for you Theresa when I read about Mark's special Valentine's gift to you. Well, it was for the both of you. The days ahead may be filled with the unknown, but you will always have your deep love and devotion. It will reach new levels of beauty and joy.
Our time at the Rose was so very special and romantic that I can't find the words to describe it. When Gene looked into my eyes, I saw the look of love that first brought us together almost a half century ago. I left my caregiver's hat at home along with the bottle of Lactulose. Our spirits and bodies were rejuvinated. We were pampered and treated like the first family. When we returned from dinner, our suite was strewn with rose petals and there was chilled cider, a boquet of roses in a cut glass vase, and a platter of cheese and crackers in front of a roaring fire in the fireplace. At midnight we opened our gifts and toasted to our lives and the beautiful moment. We came home with fond memories and the vase of roses.
Gene has been sleeping most of the time since we returned home. I know the drive and the excitement were tiring for him but he did great.
I had a long conversation with a very spiritual shop owner. She put things in a new light when she told me that Gene was on loan to me. I will not waste a moment of this special gift from God. That doesn't mean I won't have my anxieties, fears and difficult moments. I will just cherish whatever lies ahead and embrace every day.
Hi Barb. I'm so happy your romantic venture went so well. Yes we should embrace each & every day.I love the way you let us know you left your caregiver hat at home with the lactulose. Ah. precious memmories forever written in the heart, that not even time can erase.Yes the trip would tire Gene, but I'm glad he was able to enjoy it. My thoughts & prayers are with you both. Love & Hugs. later....
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there."
Barb, It was a very special moment that I will hold very dear to heart. I do not know what the future holds...I do know that, I can not take any more days for granted. I am so glad your Valentines Day was so special. Bless You!!!! HUGS!! Teresa
Hi Connie, Glad to hear from you, I always worry when I don't. How is the cold & everything? I've still got mine big time! Hope all is well for you. My thoughts & prayers are with you.later....
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there."
