Help again – My Dad

Michelle, while it is not the words you ever want to hear, at least now you can get on with what has to be done. I really think the confusing part is not knowing where you are headed. Direction seems to give everyone what they need including that little, big word, HOPE. Good luck.

Thanks for sharing, Michelle. Wishing for the best possible news coming your way.
Marion

Hi Michelle
My heart goes out to you, it seems like only yesterday we were in the very same position as you and I never imagined my mum would get better. They were fumbling in the dark – too respectful of doctors to ask what was going on. In fact, my mum, being the patient, was the last to hear anything!

Three things we learnt about hospital:
i) Some doctors don’t communicate – you have to insist that you have a daily or at least a weekly meeting with someone at the top of the careplan to summarise and tell you the next plan of action. In the end and after a frustrating time of not knowing what was going on, we phoned the doctor and insisted on a bedside meeting for a summary, as we knew there were things my parents missed. It helped us explain things to my parents (who seemed to muddle things up) and help with the decision making. We have also emailed and phoned when we couldn’t get to the hospital (me and my sisters live a long way from my parents). Overall, I have to say that the doctors did a great job – of course they wanted to see my mum get better – but they did exclude us all from the conversations and discussions in the beginning, and unless we took the initiative to arrange meetings, which I thought was poor.
i) it’s very invasive place and that alone made my mum feel exhausted with all the blood taking, procedures, injections and noise.
ii) she hated the food, the smell of the place, everything, and lost a lot of weight there – I would call it malnutrition. My mum ended up she couldn’t eat a thing and it wasn’t until we pushed for my mum to drink some nutritional drinks (Ensure) that she started to feel better in herself – so if not already, push for your dad to get his vitamins and nutrition some other way.
My mum had 4 ERCP’s and 3 stents fitted in as many weeks – and in total she was in hospital for 6 weeks. As the plastic stents didn’t work to reduce the bilirubin she had a metal stent put in (which actually drained her high bilirubin levels in 3 weeks – apparently half the time it is expected to take). The metal stent has precluded radiation and surgery (although I have read on PubMed one successful surgery with metal stent by a team of Paris doctors). She came home very weak and barely ‘well’. But since being home with me and my sisters and my dad ‘nursing’ her, surrounded by her own things and being able to rest when she wants and in her own bed, she has improved and we have seen glimpses of her ‘old self’ again – even with an increase in appetite for a while and wanting to do things in the house and have trips out – I never imagined it before. We underestimated how bad the jaundice made her feel and the recovery of this has made her feel better too with more energy. We have now arranged for some home help to come in to help my dad, and are looking at hospice care for those worse days (she doesn’t want chemo or to step inside a hospital again), but she is looking at starting some mistletoe therapy. We are so thankful for her having a period of respite so she could get her life back on track, feel in control again and plan for the next stage of her life.
Good luck Michelle, and I really do hope that your dad manages to make it home soon – I know just where you are right now and your dad is so lucky to have you on his side.
Take care,
Wendy

Sorry for your frustrations Michelle, it’s true- they are par for the course! You may need to work with your Mom, if she’s going to be taking your Dad to appts. to have her record everything in a notebook, and you can place your notes/questions there for her to take back to the doc. when you can’t be there. Your Mom likely has her own rollercoaster going on, as she tries to digest it all.

For weeks, my parents literally tuned out at the meetings, and got frustrated when the kids asked too many questions -because they couldn’t remember or didn’t know. They wouldn’t allow us to go to the meetings, for fear we’d ask too many questions or ruffle feathers…. so that’s part of where the ‘notebook’ came from.

Keep us posted, you’re in our thoughts!

Tess

Michelle…….Hang in there. You will know more after today. Your Dad must have the need to want to absorb the information and stay in control of the sitation. At this point all one can do is be supportive and to hope for good news.
Tons of good wishes coming your way,
Marion

Michelle, frustrating is the beginning. I don’t believe a word has been invented yet for CC. That seems to be a lot of ERCP’s. No MRI’s? You have every right to 2nd and 3rd opinions and we always suggest that. If they don’t think anything is a big deal its time for another opinion. Listen to your gut it is usually right. If you feel something is not being done right, maybe it isn’t. This is the hardest time, waiting for a diagnosis and getting on with treatment. Sound like you are going to be your dad’s best advocate and the journey has started. Does your dad have any other symptoms? Please keep us posted. We care.