Hi there I have been diagnosed 17 yrs and have extensive cirrhosis. I took ill health retirement 5 years ago and manage my fatigue fairly well. However there is sometimes unexpected events I can't plan for. My elderly parents are actually fitter than me, both either side of 80...... My mum has been taken into hospital and I spent 4 hours with her following her admission . I was already exhausted from a trip down south to see my mother in law ,so today I can barely function. Whilst my dad can drive to visit her I feel an obligation to help as my brother is on holiday and unaware of all this.
On top of everything else I'm having oral surgery in 48 hours.......I know I need to be ok for that but just struggling to prioritising everything and wonder how you all cope as there must be a few of you in similar situations
Sorry to complain but it's so hard! 😪
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spoul
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What a dilemma. Don't feel guilty for having a little moan, we all deserve one once in a while.
Do you or your parents have any friends or relatives you can call on who could possibly spare a few hours of an afternoon or evening to visit your mother if only for the next few days, just until your surgery is over and also to give your father a rest.
I know from my own experience how exhausting visiting can be every day, sometimes twice a day for both yourself and your father. Don't feel you'd be letting your mother, father and brother down by putting yourself first if that is what you are worrying about. They obviously know and see what you are going through on a daily basis. Burning yourself out now could jeopardise your recovery which would be no good for you or them because then they would then be worrying about you.
I faced a similar dilemma pre PBC diagnosis 2011, when I was too proud to ask the help of others. I asked for compassionate leave from work. My sister was in one hospital on life support following emergency brain surgery (ended up in hospital for 10 months). I had to keep my sisters condition a secret from my parents as they were both very poorly at the time. While she was in intensive care my mother was admitted to a different hospital with pneumonia, and my bed bound father was ill at home with a urine infection which reacted with his Parkinson's medication causing him to have a high temperature which made him delirious and to hallucinate. I tried to juggle hospital visits by doing an hour in the afternoon in one, an hour in the evening at the other. I had 3 boys at home, 2 working and one in school. While my mother was in hospital I slept at my parents to care for my father. I would go home in the morning to get my youngest ready for school, while the carers (who attended 4 x 30 mins per day) dealt with my father. I would visit my mother at lunch time when they returned to see to my father. My youngest came back to my parents house after school for his tea and a cuddle. Then in the evening my husband took over with my youngest and my older children (17 and 19) took it in turns to sit with my father while I was visiting my sister. I kept this up for nearly 3 weeks before I had a mini breakdown. I had no option but to admit defeat, suck in my pride and ask for help. My fathers brother, his wife and a friend of my mothers took it in turns to visit my mother and sister or sit with my father while I visited. I don't know how I managed without them. They were a god send and gave me back my sanity.
Look after yourself and hope both you and your mother will be well really soon.
Hi Spoul, having PBC is really really difficult. It is so hard because it simply isn't possible to go on as before when you have symtoms. But you don't really look sick and it is almost impossible for people to understand that you'd want to do more, but you can't. I didn't cope at all in the beginning, no I find I have to say no. I say no to friends and family and work. I need to rest a lot. I didn't understand this until a year after I was diagnosed but it makes a huge difference. I used to think I was lazy, my sister told me I was lazy and that I should just try harder. But she was wrong! The key to me being able to live any kind of life at all is to rest and to realise I just cannot do everything I want to. It is sooo sad and I disappoint people, but if I try to ignore my need for rest I end up hurting myself (fractured my arm, set fire to my hair, lots of bruises etc) because I become so tired that my perception is affected.
I agree with mumofthree, let the people around you know you cannot do it alone! You need to rest, too. In a difficult situation when we feel guilty about not coping we might forget to use our problem solving skills. Hope situation will improve soon and don't forget to rest!
Thank you for your thoughtful words. I know it's hard when there's nobody to share the burden........using the word in a nice way. I knew the time would come when I was given this challenge and in a way it helps my family understand my future role
You sound like a wonderful caring person. You could see what you do as a responsibility or a choice. There comes a time perhaps when you have to draw a line and put yourself first. If you've been giving all your life, it is time to receive. Your parents appear relatively healthy and have lived their lives how they wanted. Now is your time. Take your time to slow down and re-prioritize for you. If you have energy left over, then help others. Your loved ones will hopefully understand.
I just posted my story, And I too have an 86 year old father 6 hours drive away and a mother 3 hours away going into dementia rapidly now. I do truly get a sense of your struggle with obligations and how hard it can feel. You deserve happiness and time to rest too. With love H x
Thank you so much for taking the time to reply and your kind words. I have a nursing background and there's nothing I'd like more than to care for mum and I'm worried dad will make himself ill with going backwards and forwards to hospital. But he's sensible and eats there save making 2 trips just hope he doesn't have to do for long. My brother is home from holidays in a few days and that will make things easier. My other dilemma is whether to just warn him what's been going on the day before he's home.......as I know he's going to find it a terrible shock and upset to find out we've kept it from him.....not wanting to spoil his hols....xx
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