New to the Forum


#1

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 :smiley:


New to this forum
#2

Hi Rich0056,
A warm welcome to the forum!
It sounds like your dad has had a tough time and we too hope your family has a good 2019. We’re sure our members will be along soon to share their experiences and advice with you. Meanwhile, we do have some information about care homes on our website here: https://www.parkinsons.org.uk/information-and-support/home-care-and-care-homes.
We hope this is useful to you and wish you a happy holiday.

Best wishes,
Edwina
Moderation Team


#3

Hello Rich. So sorry you’ve had such a terrible year. I’m in the midst of cooking Christmas dinner at the moment with family coming so will reply properly this evening but didn’t want to just read and run. Your parents are the same age as us and my lovely husband, also 73, was diagnosed with PD in the summer. We’ve been married 48 years.

Please give your Mum a big hug from me.


#4

Hello, what a year you have had and I very much regret I can’t offer any practical advice for you but you are clearly a strong and supportive family and I. hope that will see you through. The one thing I would say is it is worth giving some thought as to what you want to achieve. That may sound obvious but there will be big decisions to make and you need to be united and have clear reasoning as the system is not easy to navigate. I suggest you write it down - the obvious one from your post would be something like - Mum needs to be able to get to Dad easily which care homes are within walking/public transport/acceptable driving distances. What about other family members/friends. you say he needs nursing care - what. exactly are his nursing care (medical) needs or is he highly dependent with needs that can be met with trained carers rather than nurses. What do you know of any prognosis? Basically brainstorm anything and everything, it may help clarify your thinking, know what you are prepared to compromise on and what you can’t and why so you can argue a strong case (should you need too.) Also bear in mind that you are looking at care homes at a stressful time so try and stay open minded. When you do find somewhere it may not be all plain sailing staff and you have to get to know each other so be sure to keep talking if there are issues, they can’t rectify something if they don’t know. I don’t know if this is of any use but maybe something will help. I wish I could do more. Let us know how you get on. Good luck.


#5

Hello again Rich. Tot has written very eloquently what I was planning to say. Brainstorming and writing it all down will help more than you may envisage.

We were in a similar situation with my dad many moons ago and the most important for us then were ability to meet his very complex medical & nursing needs (this had to be paramount) and within easy driving distance of me (my mum couldn’t drive and we already knew there was nowhere suitable near her even using public transport, but she frequently stayed with me & I lived only 30 miles away).

Though I have several siblings, they had already absented themselves from any real support for our parents as they found it too difficult to cope with our dad’s difficult behaviour. No recriminations between us, just a fact and I was the one with power of attorney etc.

It’s hard at times, not easy and best of luck but you’ll get there.


#6

Many thanks for the replies, it’s much appreciated. I’ll sit down with my Mum and sister and make sure we write down what we want for Dad and what we think we can and can’t compromise on.


#7

Good luck however whilst your Dad is the focus remember it affects everyone so whatever you decide has to be sustainable and one other thing be as honest and objective as you can; it’s hard if not near on impossible not to be swayed by an emotional response but at least try to be aware of its influence. Do let us know how you are getting on.


#8

Good luck and best wishes Rich. As Tot says, remember you all matter too.


#9

Hello

It sounds like you have all been through some real change and challenges in your family. I found communication was the hardest subject, it seems everyone wants what’s best and in their world it is their best. Can your father still speak and make decisions etc? Feeling included and listened to via all parties is important. I think there are activities going on in the, get involved section, geared at helping family situations. So much change could require a little more specialist help. My advise, keep talking, especially with your Dad.


#10

Hi Rich
Just to say, it sounds like you have all had such a tough time. I can only emphathise and say that I have been through a similar situation with my mum. She is 78 and has had Parkinsons for 15 years. My mum has had some awful things happen but like your dad, she used to be pretty fit and active and play golf. It really is so sad.

We have had many hospital stays with my mum and when an infection comes, the confusion begins and I have first hand experience of how hospital ‘delirium’ can be…it is a dreadful situation. However, it can also clear once the infection has gone. My mum finally came out of hospital and is currently at home with my dad and a carer that I found who visits their home.

However, I know that sadly the time will come when my dad is no longer able to cope so I will be faced with a similar situation as you. No advice, other than to say- all you can do is research the homes that are out there and yes- go for a home that gives the care you are looking for and is close enough for you to visit, rather than take the first one that comes up. I hope you are all doing ok. I totally understand how it feels.


#11

Just a quick update on where we are. We met with the funding team on Thursday for them to decide whether Dad’s care is funded by the NHS or the Local Authority. We did some prep which I’ve listed below as someone else may be going through the same thing now or in the future and it may help:

  • Since Dad’s earliest time in hospital, Mum started to keep a diary of what happened when so that we could refer back to it.
  • There were various forms to fill in, we completed these objectively and purely fact based.
  • We wrote a description of what Dad was like before going into hospital. We wrote about his job, what he liked to do in terms of hobbies, how he took care of himself, i.e. he was totally self sufficient etc etc.
  • We also asked his friends to write about him and how he was prior to his operation.
  • We took in some photos of him

The people doing the assessment really appreciated it and said it helped to humanise him and not just see him as a load of symptoms. We went through the assessment and they all read out what each dept involved in Dad’s care had said, and we could question and have input where necessary. The outcome is that they’ve made a recommendation for Continued Health Care funding which is positive, but this goes to a panel for final approval so we will have a couple of weeks to wait now to see what happens. If it’s approved, then we start looking for a care home with the help of a different team. We have been told that it can be more difficult in December as some people go into respite over Xmas. Not sure if that’s correct but I guess we will see.

Thanks again for all the positive comments :smiley: I’ll post another update when we eventually get him out of hospital!


#12

Just thought of something else. We talked with the panel about a Parkinsons referral and their advice was to wait until Dad is discharged. They did say that Parkinsons Nurses are some of the most overworked and underfunded in the NHS (typical!) but that this would be our best route. He’s only ever really been assessed by the neurologists in the hospital and we think a Parkinsons specialist would be able to look at Dad and maybe suggest different more appropriate meds. I can’t remember what he’s on at the moment, but he was on a patch as well at one point. However, this made him very sleepy so they took him off it and it’s never been revisited.


#13

Hi Rich, that sounds very promising and really helpful for others who may find themselves in similar situations and going through the same thing. It really is important to do plenty of preparatory work before such meetings & assessments I feel to get good outcomes.

Best wishes to you & your family, dad included, for 2019. :slightly_smiling_face:


#14

Hello Rich, well done for all the preparation and hard work you put in. Professionals can only assess on what they see and know and knowing what the person was like pre-morbidity goes a long way towards getting a quality assessment as he or she will have a more balanced view. Hoping you won’t have too bumpy a ride before things get sorted. Good luck