I've hit some sort of wall here, guys. My loved one's conditions are progressing and his attitude about it all are shifting. The cirrhosis is blooming like the flowers out our windows (that I can't open because he's cold). My usual healthy snacks/meals are disgusting him now (he's lost quite a bit of weight and exchanged muscle for stomach fluid. He feels nausea at times now.). My upbeat encouraging attitude is annoying him now (hepatic encephalopathy has kicked in). I cannot keep him motivated (even walking up and down the stairs for a cup of water is draining. He snaps at me if I ask him to walk around the block.). The only thing that gives him pleasure now is me rubbing his feet, letting him eat fruit all day (no solids or substance, just peaches or plums, etc) and leaving him alone to watch sports all day (which he doesn't even do because he falls asleep in front of the TV as he isn't sleeping at night). I'm still trying... it's just getting hard not to scream with frustration. Thankfully, I'm home, to care for him and he's able to work from home so there's little stress of finances. I'm seeing him deteriorate in front of me. I want to continue driving him but he isn't letting me. We saw out Doc the other day, he agreed I need to lessen the whip because he is transitioning to a new stage but, I need to continue to push and encourage. I'm the alpha in the house, my fiance let's me tend to him like a baby and handle every detail in the house to allow him rest, mentally and physically. I feel a great sense of fulfillment in allowing him to be a King (I feel it's the least I can do when he lives with something like, PSC). However, again, he isn't letting me do this anymore. Our house is changing. We hardly speak now, he doesn't want to talk as he's too tired. I feel like I'm a caregiver to a stranger at times. I'm very head strong so biting my tongue is getting very hard. I want to keep my spirit strong, keep on doing what I do. I need the wise wisdom of you all to help me, help him. I continue to pray for strength, patience and compassion. Feel free to send us your well wishes and prayers. THANK YOU, AS ALWAYS.
I have read a number of your posts and I must say am inspired by your dedication and determination towards your fiance.
Unfortunately I can't give you any 'real advice' per say as I'm not in any relationship myself and right now it seems like a distant possibility that I may ever be. However, on my recent search of the web I did manage to come across a decent little guide for 'caregivers' which you may find useful right now. I know it's not much but all I can say is hang in there. My thoughts are with you and your fiance.
Love and Prayers x46-2013.04PSCPartnersSeekingaCureGuidanceforCaregivers.pdf (96 KB)
I'm sorry you are both having such tough times, Gloria. Here is a link to a guide about Caregiver Burnout:
I hope there will be a tip or two in there that may help you. Thinking of you and hoping for better days ahead.
Ah, Stephen. Thank you for checking in. My hands have been full and rarely do I have online time. The “situation” has improved. Still, I’m fighting a battle with my loved one daily (“Enough with the salty olives, half a jar is enough!?!”) however now I fight smarter (“Oh, you’d like olives, let me get some for you.” Then I pour just the right amount and hide the jar deep in the fridge.) He drives me crazy but I’m working on myself. He has enough to worry about. I did bring up his new brute attitude with his Dr. At that point we discussed depression (which is completely acceptable and reasonable) and it was dealt with by a low dose of Zoloft. I now fake smiles, pretend I like what he’s watching and apologize when I know I’m not wrong which sounds horrible but it works on both of us. It’s hard to be angry when you’re forcing yourself to shake it off. I pray often, I keep music on, I accept when he’s tired and encourage when I can. My attitude change created a change in him. Health wise, that’s a new post but as far as the mental battle that directs the emotional battle - we’re BOTH doing a lot better! Good bless.
Gloria, how are things going now?
God bless you both X.Our household is the same it’s so difficult to do and say the right thing at times. I too am so frustrated seeing the person who you love so dearly go through such a horrible time. Take care X
I understand how you feel as a patient who has had 2 liver transplants due to PSC. My mom has taken care of me both times and I can tell that I wouldn’t let my mom leave my side but I didn’t want to talk to her. However knowing that my mommy was there for me was crucial. Just having you there is speaking volumes in a mute household. Trust he is grateful for you and the know that all of the lashing out and bad attitude is normal and it is not directed towards you. Prayer, love and support is what got me through.
Hi Gloria…we’re thinking of you and your family. I pray all is good as it can be.