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Update on Dad

Thought I would send an update on Dad. He never got to the neurologist due to having a fall on the same day. He was taken in to hospital where he remains now. The have done mri scan and confirmed he has not had a stroke however nothing else has shown up. They do not think it is Parkinson’s as his tremors worsen when doing something. He saw the neurologist on Monday where he asked him to walk and he fell (thankfully onto his bed. Neurologist did not think it was Parkinson’s. I wasn’t there but presume his shuffle and gait had gone? They looked at Parkinson’s plus but have so far ruled out PSP as his coordination and eye movements are good. The confusion WAS caused by a water infection which was a relief. They will not allow him out of the hospital until he can walk. He still needs a frame and assistance of two nurses. They do not know what is wrong and just have to see how he progresses. Mum is totally shattered with visits to hospital twice per day but she will not leave him. I phoned her OT yesterday to be told her case was closed on 2nd Feb, totally fuming as have to go through dr for another re referral.

My main concern at the moment is when dad comes home. I have been sleeping with Mum on a night as she needs assistance getting out of bed and using commode. Dad can not do this when he is home and I’m desperately worried he will still try and end up falling again. I will give him a bell to ring but knowing him he will only use it once he has attempted to help and realises he can’t. I want him home ASAP as will help with both Mum and dads emotional well being but worry how I will cope with them both. Yet another hurdle to overcome and sure there will be many more. Wishing you all well and thank you for all the advice you gave xx

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Tell the hospital all this! They have a duty of care to make sure they are discharging your Dad to a safe environment. It might mean he is there for a bit longer. But it IS the only way to get extra help. Sorry, I am presuming you are from the UK. If not, say where you are from, so help and advice is more local to you.

Lots of love

Anne

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They are aware Anne thank you and doing a referral to social services. Yes I’m in the UK. Dr just called and will re refer Mum so hopefully get some help soon xx

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Larry went through a year and a half of tests with no answer. That’s when I took all the information to another neurologist who was a movement disorder specialist. She gave us an answer on the first visit. If you are lucky your father’s falling is due to something else. Hopefully they will figure it out.

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Can I ask where the specialist was based? It took two years to get Mum (semi) diagnosed as still can’t/won’t confirm it and as we only found out May last year I really don’t want to go through all this again and I’m sure they don’t either. Thanks for your response.

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I’m in Philadelphia Pennsylvania. Not going to do you any good. Plus the woman we saw who told us what was going on was let go from the practice. As she said she wasn’t one of the boys or a graduate of the University of Pennsylvania. They had her interview her replacement. She had no idea she was doing so at the time. Needless to say she was rather angry. After that I took Larry back to where he had been for the physical therapist who I liked a lot. Neurologist are basically useless with this disease.

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Sarah most hospitals in the UK have a movement specialist or will refer you to one nearby. They are usually very good.

Marie x

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Fantastic. I will look into it x

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Sarah you have such a lot on your plate. Your Dad needs to be diagnosed before he comes home. It could be MSA or MS for example? Although MS is usually a slow thing unless something has triggered it? That is just a couple of many progressive conditions it might be. If he can't walk without two people they will have to help him AND your Mum when he comes home. If he remains like this he won't be able to help you when he comes home as every step he takes will be dangerous.

So they HAVE to help your parents. There will be social workers in the hospital. Usually they are pretty good as they are linked to OT's and obviously carers too. Can you ask to see them when you visit the hospital?

How is your Dad's swallow and speech? If there are any problems with either ask to see someone from the SALT team.

As Heady has said they have a duty of care and can't just can't send him home without any diagnosis or care package in place. Your Mother should have a Care package in place. Has she? Poor woman is undoubtedly worn out. It is a very stressful situation for all of you. Please keep in contact and let us know what is going on? You need support and you will get it here. People are very supportive and helpful.

Marie x

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Thanks for your advice Marie I really appreciate it. The hospital are going to contact social services tomorrow and having spoke to the Dr she will re refer Mum to OT.

Having seen dad today he is looking much better and actually walked unaided which pleased him. I didn’t see it so not sure what him walking unaided looked like and forgot to ask if he used a frame. I haven’t looked at MS but was able to fit many symptoms to MSA. I will give MS a look. I’m really hoping it was due to stress because of the speed it all came. My mum had a threat of cervical cancer and the tests were quite traumatic for her. Turned out it was benign polyps but had to have them removed. This was really stressful and resulted in being cancelled as she couldn’t open her mouth wide enough for a tube to be put down. (Strange how she can open wide to get a cream cake in bless her) my daughter also took an overdose (thankfully she is ok now) they also just moved 200 miles away from their home town to live near me due to mums illness. He is 83 and up until 4 weeks ago was mums main carer.

So maybe wishful thinking with the stress but I will keep him closely monitored. Thank again for your advice

Kind regards Sarah.

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Sarah

Read Kevin's post. If you tell them while he is in hospital that he needs CHC funding they will probably push for it to get the bed. It is free as Kevin said. If the council social workers get involved you are looking at a lot of money to pay. Unless your parents have no funds? Even so they can put a charge on the house to get the money back and I am presuming you are living with them in their house so you need to think of that too?

You will have to fight to get CHC but there are past posts from Kevin on here about how to go about it. If your Dad needs medical care and it sounds like he does, or if your Mum needs medical care the same applies. Ask them for CHC funding. It is not means tested and comes from the NHS pot of money.

Can you get him to walk while you are there? Not that I am thinking they would pretend he was fine you understand?!

Marie x

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Hi Sarah

Well that's some good news.

It sounds like things are very tough for you all right now.

You might ask the senior on duty nurse to do a referral for Continuing Health Care. They are duty bound to ensure that your Dad is only discharged home when all risks (for home) are assessed and a care package is in place to manage them.

Your Mum cannot do 24/7 care with night toileting. No-one can. Continuing Healthcare (if you don't know) is free and it will involve getting carers in. It's only available in England and Wales.

Your Mum should not accept him home until proper support is in place. Its absolutely fine to tell the Ward manager that. It might help to motivate them to get a package put in place.

I do hope this helps a little.

Best to you all

Kevin

PS - I've only just now read the thread. No - not Social Services. Their care is means tested. Ask for a Continuing Health Care referral - it is not means tested. Be aware that a sound home care package can quite easily reach £1000.00 a month. Your father is entitled to a CHC assessment. CHC is fully paid for by the NHS.

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That’s great advice Kevin and will do just that. Mum has PSP so needs 24hr he care herself. Great to know it’s not means tested though as they sold there house and couldn’t afford a bungalow so we ended up all moving into a large bungalow that was rented. So have money in the bank to enjoy whilst they can but unfortunately it’s getting eaten up very quickly on special adaptions.

Will speak to the hospital tomorrow. Thanks again Kevin. Any advice is greatly appreciated x

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Sarah see you have read the post from Kevin. Don't allow your Dad to be your Mum's full time carer. He sounds ill so needs someone to take care of him? They both do!

You need to think what will happen when the money has gone? Don't let the powers that be get their hands on it.

Marie x

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Looking it up now Marie and will tell them at hospital tomorrow. Thanks for your support I am really great full. Will update tomorrow x

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Just flagging up - I have edited my post adding more info.

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Hi Sarah

Reading what others have put is good advice

I had problem when Archie was due out of hospital last year

I ended up with hospital social worker who became involved to cut it short if they tell you they need the bed tell them to take a

hike he’s no care in place and not going in a nursing home .so until things are in place he stays put they should them help to sort things and help you

Hope you get things sorted

Sue x

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Stand your ground as they will try to do anything to get the bed free and not follow policies etc.

Two years ago they were trying to move Mum into a home /rehab bed and I refused and said no she comes home with care package.

You have so much on your plate and unfortunately in our experience hospitals don't tend to ease the stress.

Big hugs

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Excellent advice. I will look into it and speak to hospital tomorrow. Kind regards Sarah x

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You might want to think about asking the hospital's PALS service to get involved. They were absolutely invaluable to us when my dad was in hospital, and we were having trouble with everyone singing off different hymn sheets. The PALS manager was instrumental in getting the CHC funding sorted, she and I worked on it together but she helped with all the difficult phone calls and getting the discharge liaison manager on side too. I hope you have resolution soon x

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