Every Liver Transplant Caregiver should know: “Every caregiver needs to learn about caregiver responsibilities/expectations and about the disease of the patient for whom they are caring. Research and learn as much as you can about the liver. How it works, how it works alongside other organs, what happens to body systems as the liver begins to fail. Information is power. Understand what a MELD score is and how it affects how your loved one gets put on the transplant list. Look up all the medications your loved one is taking. Help to make sure they are taking the medications as they are prescribed. When mental status is getting worse, memory problems happen. Try to understand how everything works together. Take notes between medical appointments so you can address your concerns in a complete way. Be as helpful to the different doctors as possible. If the endocrinologist asks for a list of times and blood sugars, do it! Become part of the medical team by advocating and representing your loved one the best way you can. If you can only do so much, then do that the best you can. If the more information you have, the better you feel, then study, learn, ask questions, be proactive. There came a point where my husband could not think or speak up for himself, his memory was shot, he needed someone to speak for him. That’s where I came in. Gradually the doctors would just talk to me because my husband just wasn’t able to tell them what was happening in a clear way. A big part of caregiving is being an advocate. Make sure every doctor and nurse working with your loved one knows you are in this 100%.”
As a caregiver I wish I would have known: “I wish I would have known to not take it personally. Liver patients are uniquely affected by deficits in mental cognition. Hepatic Encephalopathy is real and unless you are prepared for it, it can be devastating. I was taking care of my husband’s every need, including bringing him every meal to eat bedside. Even though I quit my job to take care of him and was doing the best job I could do, my husband would still yell at me, curse at me, tell me how selfish I was. At the beginning I didn’t understand what was happening. I took it personally and I cried a lot. Then I proactively read about what might be causing my husband’s awful behavior. He had hepatic encephalopathy, when toxins build up in the brain because they cannot be filtered correctly through the liver. This causes a change in the personality of the patient for the worse. I spoke to our liver doctor about it and my husband was put on a liquid medicine that helped flush out the extra toxins. The side effect was gastrointestinal problems, but my husband’s personality was much improved. Even though the medicine helped, it is very likely your loved one will still have times when they flare up. One day we were in the car and my husband was going off on me. I decided right then and there that I was going to immediately forgive him, because it wasn’t him. I would forgive him and immediately move on. So, from that day forward any time he went off on me, I forgave him in my heart and then changed the subject immediately. Just doing that reframed our relationship and kept things moving forward in a positive way. Understanding how hepatic encephalopathy affects your loved one is crucial to your happiness as a caregiver. I understand that hurts when you're giving your all and getting rude and bad behavior back. In those dark moments, try to remember it isn’t them, it’s the disease, and move on.”
The most difficult aspect of being a caregiver: “Take care of yourself! As it got closer to his transplant, my husband was in bed most of the time, especially the last two years waiting for his meld score to worsen. I couldn’t go very far, so I found a hobby that worked within the limitations of taking care of him also. I decided to garden and plant. Those last two years our yard was fabulous! I needed the physical activity and it was very centering. I worked for an hour or so and then I’d go in and check on my husband, give him his meds, make him food etc. That really helped me through those last hard times.
Stay Optimistic! I cannot say enough about the power of positivity. Talk about what you are going to do AFTER the successful transplant. Set some goals. Ask your loved one to dream again. My husband had convinced himself he was not going to make it. I had to get serious about changing his negative thoughts. What would your loved one want to do when they get through this. Because they are going to be on the other side of this thing. Do they want to travel? Change of career? Find out what your loved one wants to do after you have won this battle. My husband’s transplant was 4 years ago and he is about to do his first triathlon! While he was sick in bed, he made the goal of getting in shape after his transplant. He began training as soon as he felt up to it after surgery. He’s finally ready to live that dream and I couldn’t be more proud of him!”
The most rewarding aspect of being a caregiver was: “Give back! After the transplant, find a way to give back. My husband and I run/walk the Cooper River Bridge Run every year and we wear shirts advocating DonateLife and organ transplant awareness. Join a transplant support group. Some groups have patients pre- and post-transplant. Help other transplant patients and their caregivers with your unique perspective. My husband is very active in our hospital’s transplant support group. He gets a lot from giving back.”
I was most surprised as a caregiver by: “The absolute commitment it takes to be a caregiver surprised me. Caregiving became my job. I looked at it like that because I wanted to really give this thing my all. My husband is the father of our 5 sons and 6 grandchildren. We all need him to be in our lives! I knew caregiving would be intense but it can be and is all consuming. That is why, getting a hobby and doing things that are just for you is so important. Ask other loved ones or friends to give you an afternoon or day to yourself. To do whatever you want! That helps the caregiver, it helps the sick loved one because they see other people love them too and it helps the family and friends understand the scope of the situation.”
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