This is my first post. I just don't know what to do. My Dad has Parkinson's and has had it for 18 years. Up until he went into hospital last month he was on Sinemet, can't remember the dose but it is every 2 or 3 hours and a slow release tablet at night.
Two years ago my Dad had a lot of falls and hallucinations and he ended up in hospital and it turned out to be a urine infection. He had antibiotics and got better and came home. All straight forward.
My Dad is now in hospital again and has been for over a month. This time he had all the same symptoms as 2 years ago but on admission to hospital the doctors said there was no sign of an infection. So they thought that he was over medicated for the Parkinson's and reduced it by almost half even though he has been fine on the medication for years. After two weeks of no improvement and in fact getting worse, they tested his urine again and found e-coli infection. So he had antibiotics again and all the visual hallucinations disappeared and he seemed to be on the mend. He then was transferred to another hospital for rehabilitation.
He has been there for 2 weeks now and he just isn't getting better. He isn't mobile at all. He can hardly talk, hardly swallow and is doubly incontinent. We asked the doctors to up the meds again because we felt the infection was the cause all along so they eventually agreed to do it gradually. They increased the Sinemet by one tablet and it didn't make a difference so they upped it by one more and he started getting all confused again and is talking lots of rubbish. So they have reduced it back down again. But he is still talking lots of rubbish.
I just don't understand. Five weeks ago everything was fine. He could move, he could walk, he could talk, he wasn't talking rubbish, he could eat fine and he could go to the toilet fine. Is this the way it's going to be now? I just can't accept this. Is it common to have such a sudden deterioration like this? Is it permanent? Does anyone else have a similar experience?
Any advice/thoughts are greatly appreciated.
Thanks for reading.
I'm sorry to hear what's happening.
Are the doctors who are treating your father specialists in Parkinsons? Is your father in the same hospital as his neurologist or a Parkinsons Specialist Nurse??
I ask because my OH was in hospital when a doctor decided to lower and change his medication, a doctor who had never ever seen him, not once. He had undergone major surgery and was in HDU and an inpateint for 3 weeks. It took 3 months to get him back to anything like he was before he was admitted.
I learnt from that and by a recent visit from a specch therapist who suggested medication for a particular problem, and which the PSN said never try, to not ev let anyone, except my OH's consultant or PSN to alter his medication.
There are some things which are so similar to what you have posted that I would prefer not to divulge then on open forum, ( roll on the new PM system).
Please get in touch with whoever deals with your father regularly and get their help and advice.
I am so sorry to hear of your Dads problems in hospital, as Benji said you really need to get in touch with your dads consultant the poor man needs help now, this is such a common problem when going into hospital it just is not the place for pwp's as so many doctors and nurses still do not understand how important the medication to pwp's is. I have had a student nurse friend of mine staying and she finds this problem all the time so is doing a presentation on the effects of late medication on the patient so maybe some people will listen, I hope so.
As for your dad I hope everything gets sorted out soon and then he will be his old self and you can get him home, it is so difficult for families to have to stand by and watch, but you must keep asking questions and getting answers and don't take no!
Thank you so much for your replies.
The doctor who dramatically reduced his medication was just a general doctor on the medical assessment unit. At the time we told them to put it in the notes that we the family do not want his Parkinson's medication altered without consulting a Neurologist. They still did it because his symptoms were so severe. They didn't listen to us. And even when two weeks later it showed that he had e-coli, they are still putting everything down to over medication rather than infection. I just can't believe that for years and years his meds have been fine and now all of sudden they are not. The symptoms are exactly the same as two years ago. In my opinion, for some reason the infection didn't show when first admitted to hospital but I think it was brewing and it has a major affect on Dad.
A year ago my parents moved to a different area and we thought his care had been transferred from his old Neurologist to a new Neurologist but we only found out recently that he is now under a Care of the Elderly Consultant. This was certainly not what we expected and has been a major disadvantage of moving. I am really not happy about this obviously because that Consultant is not specialist in Parkinson's particularly. He probably knows a bit about everything but master of none.
We do have a PNS and she was instrumental in getting the hospital to start putting the meds back up to see what happened. But we saw her once and now she is on holiday.
We have had so many problems with Dad getting his medication on time. It's such a battle all the time. So not only has his medication been almost cut in half, he often gets it late too. One nurse even gave him his slow release Sinemet in the middle of the day instead of before bed. When we questioned her she said she didn't know there was a slow release Sinemet and a standard Sinemet.
Other problems with his care have been things like the other day his catheter bag burst because it hadn't been emptied. And the other day Dad was choking and no one answered his call button. And a lot of the time he doesn't have the strength to push the call button anyway. Luckily my brother was there but what would have happened if he hadn't? Also SALT assessed him the other day as OK to swallow normal fluids but for that particular 5 mins he was able to - if she had come ten minutes later she would have seen him choking.
The staff just doesn't seem to understand Parkinson's. It's so frustrating.
Please ring the helpline top left of this page. It is a freephone number. They will enable you to quote chapter and verse to the hospital medics about the very real dangers and likely effects of abruptly reducing pretty well any anti-parkinson drug, Sinemet included They have lot of publications about stays in hospital for Parkinsons patients and some are addressed specifically to the professional. Halving the large dose of sinemet your father was on displays a complete ignorance of Parkinsons Disease. Did they even consult your father's Consultant Geriatrician? Have you a PD nurse - they often go into hospitals to sort out what's going on with individual patients and liaise with the hopsital
My husband was diagnosed Parkinsons by consultant in the care of the elderly clinic . He is the only person he has seen apart from the Gp . . Although he was 74 when first diagnosed we were surprised and concerned when we saw that is was in the care of the elderly clinic . It seems to be the only place we have in our town in S Wales .
I am so sorry to read your story.
As well as the suggestions you have received already there is also PALS, the patient advice and liaison service. If there is one in your hospital i would hope they would advocate with you regarding your fathers care. You could try them anyway.
Many geriatricians are very good at treating Prkinsons in older people so hopefully yours is one of them.
I do hope you get thing sorted out pretty quickly, you will have to keep pushing and insisting because we have been through this sort of situation many times and still are now although my husband is in a nursing. After one of our last experiences I contacted Steve Ford about the complete lack of understanding in most hospitals and my niece is in her last year of training and she was just telling me this week how frustrated she gets knowing the importance of meds on time when she has to ask a staff nurse for a patients meds and they come twenty minutes late, so she is going to do a presentation on the affects on patients of drugs being given late.
A tip for people with difficulty swallowing is to get things like small pots of custard or yogurts these can also be used to help give medication. My husband has choked 5 times now at the nursing home and they have only just got him in time but this must be a real strain on his heart, he is on a soft diet now but hates it so I take him in things that are easy to swallow but have a treat affect like raspberries and cream or ice cream.
One thing I will say though is that some pwp's lose weight suddenly as my husband has three stone in just a couple of months so he also has Plus 40 I think they are called which is like a milkshake but with all the added extra things you need.
I wish you good luck but keep on top of everything and keep asking questions.
Does your NHS trust have a patient facilitator coordinator?
No,I had never heard of such a person either.
We were referred to them when just chatting informally to an officer of PUK. Subsequently we were interviewed anonymously and know for a fact that the interview has been used for training purposes.
Do ask if there is such a person in your local health authority, thay may be of great use.
Even the most minor UTI or other infecton can cause extreme confusion in a person with neurological issues; it was incredibly stupid of the doctor to interfere with your father's PD medications as a first line of action. Sadly hospitals are most definitely not the place for PD patients as for some reason the whole concept of "medications on time every time" just doesn't seem to be understood, and the consequences of interfering can be devastating, as you've found.
Infections, and delirium as a result of infection, can play havoc for some time even once the infection has been cleared; hopefully if your father is returned to his correct PD medication level and given some TLC in the rehab unit he may recover his cognitive skills and mobility; it can happen.
Just be prepared to keep on his case and be his advocate.
Thank you again so much for your replies. I appreciate the support and advice so much.
My partner actually suggested contacting PALS too. And I will do that. I will also contact the helpline for information and will find out if we have a patient facilitator co-ordinator.
Since moving house my parents have felt quite alone. In over a year they have only seen the Consultant once because appointments kept being cancelled by the hospital for one reason or another. So there isn't much of a relationship there and he doesn't really know Dad's history. Hopefully our PDN will be back from holiday tomorrow and can step in again and help.
I was surprised that Dad was under a care of the elderly consultant. He is only 70! I don't really consider him as "elderly".
We have been taking yoghurt in for him and giving him his meds with that and that has helped. The hospital haven't been doing that though. We also tried to give him a few Maltesers because we thought they were a treat and melt in the mouth. Sometimes he can eat them but sometimes he can't. I think his mouth is so dry that it just sits there. We also got told off for bringing them in because Dad is also Diabetic. We just think it is better that he eats and puts on a bit of weight. They have started giving him fortified drinks too which he likes.
Another question I wanted to ask is that because Dad can't swallow very well they have changed his meds from Sinemet to Madopar because Madopar is a capsule. Is it safe to do that? Are they exactly the same drug? I know they both have levadopa but the other component is different isn't it? Yesterday when a nurse brought his meds my brother happened to be there and saw that the medication was Sinemet so my brother said I thought he had been changed to Madopar and the nurse had to go and check the notes and then had to apologise. It just isn't good enough. I really do despair!
They started putting the meds up again yesterday, increasing his meds by 3 more Madopar. So we will see what today brings.
Thanks again everyone.
Chocolate isn't really very good once the swallowing is affected as is is a bit sticky but you can get the custard in different flavours to make a change for him and they come in packs of four which can be stored in a cupboard not fridge. He may also be able to have rice which comes in pots the same, I would check I am sure you can get sugar free ones.
best of luck
So the latest is that the doctor upped his meds by 3 Madopar and it has been great that he can now swallow and talk and even walk a bit but the downside is that he seems to have totally lost the plot again. He is talking rubbish, he can't operate the TV remote control. He is being aggressive to the nurses believing that they are poisoning his food because they want to murder him and he tells us they torture him when we aren't there. This is totally out of character. My Dad is not aggressive at all. And I know the nurses aren't mistreating him even though a tiny bit of you does wonder with everything you read in the newspapers!
I have literally just heard that Dad has another serious UTI! So I wonder what is down to the infection and what is down to the change in Parkinson's meds, or whatever!
We shall wait and see.......
The confusion possibly is down to the UTI; but equally changing him from sinemet to madopar is a big change - as he is swallowing better, could he go back to his sinemet?
Are they keeping track of his diabetes? If he is eating erratically, then his sugars are probably a bit all over the place too.
And don't forget hydration levels - it doesn't take much dehydration to become a bit confused, plus the need for increased hydration with the UTI.
Poor chap, what a nightmare for him and you. With PD it is such a fine balancing act keeping the meds at the right levels for the body to work properly, and it doesn't take much to knock it all out of synchronisation.
But I'm glad there has been a slight improvement - lets take that as a positive sign, and hopefully a bit more eating and drinking will also aid that. Are you able/allowed to be there for meal times? That can help, especially if he is confused - sadly staffing levels don't usually allow for the one-to-one care it sounds like your dad needs just now to keep him improving.
Can you tell me what is the difference between Sinemet and madapor
Just an update, wish it was a happier one.
Basically Dad is not making a recovery. Tomorrow I am going to a multi disciplinary team meeting with all the people who have been looking after Dad. We need to decide where we go from here. I know what they are going to say - they have done all they can and unfortunately he needs to be looked after in a nursing home now.
I find this so hard to accept. At Christmas he was relatively well. Now he doesn't even know how to use a toddler beaker. But one minute you can be having a normal conversation with him and then the next he is talking rubbish.
Feel quite alone - our Parkinson's Nurse has been an absolute waste of space and Dad hasn't even seen a Neurologist whilst being in hospital.
I just don't understand. Tomorrow is going to be very hard.
Does anyone know where I can get advice on homes and the financing of them etc etc. Will my Mum have to sell the house?
Please phone the free Parkinsons UK 0808 800 0303 helpline (above left on this page). There may well be a Parkinsons UK Welfare Officer for your area.
The helpline give medical and welfare advice (some helplines now call themselves support lines because some people think help implies helplessness or the need for counselling). I think they will know whether it is normal to go from dx withh slight symptoms to being in a home without any further input from a Parkinsons neurologist - its doesn't sound right to me although I know in some areas its sometimes better to see a Geriatric specialist with a special interest in PD where there is not a neuro near enough.
You are entitled to ask for a second opinion and most medics are used to this. Is your "useless" PD Nurse perhaps taking too much on themselves? They are usually very good.
Parkinsons UK have a wealth of publications - see HOME (black button very top left) Or google Age UK and up will come a webpage which has detected where you
are so you get signposted to general and local knowledge. That's how I got the input of the Occupational Therapist for my mother when social services were trying to tell me we couldn't have it because we were self-funding. Also I got a list of approved homes from the county council because the Age UK info.told me I was entitled to one.
so sorry to hear your news , it must be hard as you want to remain hopeful.
Re: funding for your Dad's care he will need a financial assessment but if your Mum is still living in the house you will not have to sell it.
The FA will assess your Father's contribution , they take into account his income/pension and any savings in his name eg if they have over £23000 but in both names they will only take your Dad's share into consideration.
Also please ask if the MDT feel your Dad may meet the criteria for Continuing Health Care funding if not Funded Nursing Care (FNC) he is entitled to both these assessments .
Your local authority (Social Services or Adult care )whatever they call it in your area if you call the Adult Helpdesk they should send you an area related brochure on homes in your area , the booklets also have lots of information about funding etc.
If it is a MDT meeting there should be Social Worker present who should be able to advise you if not ask to see one she#he should supply you with the care home directory.
hope above helps , hope all goes well tomorrow , it must be a very worrying time.
Take Care x
Hi there again,
Firstly thank you so much for taking the time to reply. I appreciate your advice and comments.
I will ring the helpline to get further advice. I rang them at the very beginning and they were very helpful. I also think it is a good idea to get a second opinion although I feel a bit uncomfortable asking for one. I will get over it though!
At the meeting there was a doctor, the ward matron, the occupational therapist, someone from social services, Dad and us of course. The ward matron and OT were excellent. It has been decided that Dad will come home next week for a 3 day trial to see if being at home helps him recover. The hospital can keep his bed for him for a maximum of 3 days. During these 3 days there will be regular visits from the occupational therapist and the ward is only a phone call away.
So we shall see how it goes. Will keep you posted. Please keep your fingers crossed for a positive outcome.