Hi everyone. I’ve just joined the forums as I’m hoping to get some useful insights and possibly some support. My Dad was showing the very early signs of Parkinson’s at the start of this year. He’s 73 and retired 8 years ago. He was still driving and playing golf twice a week, but he had slowed down a lot and we thought something wasn’t quite right. He had to visit the Drs about something else, and his Doctor said he suspected Dad might have Parkinson’s. He needed an operation for an unconnected issue so they said they would tackle that and then discuss the Parkinson’s and a formal diagnosis afterwards. Dad went into hospital in May this year, he’s still there now and is simply not the same man who went in. He can no longer do anything for himself, he has a PEG for feeding and needs help doing everything. He’s often confused and is often tired.
After his op, he seemed to start recovering well, but then they found that the internal stitches had come apart and he was at risk of sepsis unless they opened him back up again. He had already undergone a 9 hour operation (should have been 4 but they didn’t seem to know about the emergency operation he’d had 20 years before in the same hospital when his appendix had burst) so we were told to get in ASAP as he may not survive. We rushed down, but by the time we got there they had decided on another course of action and put drains in. He’s suffered multiple infections, spent weeks in ICU when we nearly lost him again, and has been on a ward where his levels of confusion seem to fluctuate. He’s lost over 3 stone in weight and spends much of his time asleep.
He’s now ready for discharge, and we’re going through an assessment to see if the NHS or Local Authority will pay for his care. He has significant nursing needs and everyone who has seen him says he will get NHS funding but who knows! They wanted to do the assessment in the community and have offered us a number of different care homes, all of which are at least a 35 minute drive away. My parents have barely spent a day apart since they got married over 40 years ago, so my Mum wants to be near him. She does drive but isn’t that confident so we’ve said no to all of them and they are now doing the assessment in hospital.
The ward have said he needs 24 x 7 nursing care as he often tries to get out of bed. Having spent so long in bed, I’m surprised he has the strength but he’s a tough old bird! We hope that when he does eventually get out his mental capacity may improve and the need for 1-2-1 care will not be there, but I’m worried that we won’t be able to find him a home due to the cost.
I have to say that most of the staff at the hospital have been fantastic. They struggle to cope with his needs in the ward he’s on, but they try their best. His consultant has disappeared, and as Dad has moved around the different parts of the hospital (Surgical High Care, ICU) they have always said that they continue to support him after he’s moved to a different ward, but this ‘support’ has never lasted more than a couple of weeks where it seems to be ‘out of sight, out of mind’.
As a family we’ve been through the mill this year and we hope for a better 2019. I guess what I am hoping to find here is some friendly advice from anyone who has gone through anything similar. At this point, we are not sure whether we should just accept the first home that can cope with him or hold out for something nicer? Sorry for the lengthy intro, and thanks for reading