Calling al health professionals, who know alot about parkinsons? Advice needed, re fading health of my dad

[haychee]

My dad has had parkinsons for 10yrs approx and has been gradually declining in his general health and quality of life.

I am not the main carer his partner is (who doesnt readily ask for help). He has also suffered with coronary problems, angina, triple bypass which is now failing as was done 11yrs ago, and so suffering angina again.

There is a parkinsons nusre and a consultant who are supposed to be monitoring his well being and adjusting his meds as appropriate.

His carer, did for the first time ever, try to contact one of us daughters over the weekend as she was very worried about him. Apparently he is experiencing quite severe hallucinations and refuses to eat,because he believes his food is contaminated with insects! He can see them, they are real to him. She (his carer) can only get him to eat a few things (swallowing difficulties also are a big problemo) custard, soup and thats about it.

She doesnt have any faith in this parkinsons nurse and is reluctant to ask her for her advice. Ive urged her to, as having been a nurse myself (general surgical very little knowledge of this), i know for a fact you dont become a specialist nurse just by walking in off the street and hope to god she does know her stuff. Apparently this nurse had previously advised a med that didnt agree with him, or she advised to take more of something in the morning and then further doses throughout the day which made him unbearably hyper and aggitated.

I am concerned because he is eating very little and is obviously distressed at the things he thinks he can see.

Is this medication related, parkinsons related or is there some kind of dementia going on? I am concerned because if he doesnt improve his diet and anxiety he will end up in hospital on a drip which wont help at all, and will possibly be the beginning of the end for him.

I am asking here because i know there are alot of mners who are nurses and because i do not have the right to contact this parkinsons nurse myself. Any body with experience or knowledge please advise.

Thanks in advance

I think you need to talk to doc/nurse about that but he shouldn't be driving in my opinion

FIL gave up his license quite early on in the onset of the disease.

No he shouldnt. Apparently he just sits there and steers and canges gear appropriately and she talks him through everything else. Is such a concern, it could be me and my dc going in the opposite direction.

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OK, cece beat me to it- he's undoubtedly got LBD or Parkinson's with dementia (a lot of overlap). It's essential that he sees a specialist- the Aricept type of drugs can have a near-miraculous effect in LBD. There are very good comprehensive studies showing this, and the sooner he's on them the better (if they are willing to fund them). My dad has been hallucination free for over a year now. They have taken away his licence, but I think it was the right decision to be honest.

Thanks, what is aricept type?
I need to be fully armed with defence if and when needed.

Sorry, just read a few more posts properly- it is part of the same thing as Parkinson's in the sense that the same molecular changes are causing both that and the dementia- it's perfectly possible to have one without the other, but they are part of a kind of spectrum. Sometimes the first sign is the PD, sometimes (like my dad) that doesn't develop until after the dementia. The PD drugs can excacerbate the dementia though, so that's another reason why it's crucial to get him to a specialist.

Well, the one my dad has is galantamine- there are a few drugs of this type, they are the ones that NICE has been arguing about for Alzheimer's, but the data are much better for LBD. They are anticholinesterase inhibitors- if you just google aricept you'll get lots of info. Do you want the reference to the paper I mentioned?

How long should we expect to wait to see the consultant or nurse though, i have a feeling he could be left like this for some weeks until seen. I know they are busy and have hundreds of cases to see to, but im worried because of the lack of nurition that this will worsen any effects he is suffering.

Yes please, for reference of paper if you have it. Dont go out of your way though.

I don't know I'm sorry- we are in Scotland so it's probably different. My dad went to his GP (well, my mum did it all) and then got a referral quite quickly, 2 weeks maybe. He was assigned a CPN too, and his care has been fantastic since.

These links are a bit long but here goes:

Ref 1

Ref 2

Sorry I am sounding so clinical and detached- it's an awful, awful thing to see. My dad is physically very very frail, but it's made such a difference to him not having hallucinations (and to us, to be honest), so that's why I feel so strongly about these drugs.

Thankyou tamum. I will be hoping that his carer will allow me to attend his next appt or meeting with the nurse and i will suggest these types of drugs and see what reaction i get! Im guessing they are expensive, and possibly one of those postcode lotteries that appear to be apparent, with reagrds to what drugs you can get in which counties.

I dont know what drugs he has tried before and what hasnt suited him. I dont even know what he is on now. She (the carer) keeps it all under wraps and until now has coped very very well, but she is eldery herself and that worries me too.

Someone on the parkinsons society website is adament its the dopamine drugs that are causing the hallucinations. What do you think?

It's a really hard situation by the sounds of it. I would honestly print out those references- a lot of people seem to think that all dementia is the same, and it really isn't. The Parkinson's nurse may not be enough of a specialist in LBD to know much about the drugs for that as opposed to PD, but I may be completely wrong- the best of luck with it all.

I think there's no doubt that dopamine can make things worse, but I don't believe (personally) that it can cause dementia on its own. It's critical to get the doses right- my grandad had this too, before LBD was a recognised disease, and he was given dopamine that made him much worse. There is much more understanding now though.

Sorry, I should have said, I am using hallucinations and dementia interchangeably because they came together for my dad, but it may be different with your dad of course.

Hi all and thanks for all your advice and support.

I went to see dad and carer today. Carer was out for a good 2hrs and i got to talk to dad for a long time alone. He told me all about the "bugs" in his food and they are so real to him that it makes him vomit at the thought of eating any of it. He describes boiled eggs with arms and legs and "bloody ugly" faces. Rice pudding is maggotts all moving about. A small amount of butter on his toast soon turns into an earwig. He knows that they arent real but looks back and the look even more real. He says it doesnt matter how much he tries to convince his mind its all imagination, that he still wretches at the thought of eating it. He also had a minor blackout the other day and fell onto the wall/doorframe and his bruised his bottom quite badly, presumably because he is not eating enough. He explained how the carer (although, dont get me wrong does care for him alot and very very well) can get cross with him when he says about the insects. I suppose it must be very waring on her day in day out. We talked about the driving and how he thinks he is doing ok, he suspects the gp will soon put a stop to it though! He also tells me how he gets lost on occassions, on short journeys he has done since a child and just gets lost along the way. He also describes hpw he permenanly has the feeling that there is a third person in the room. He is very forgetful, he forgets names (he should know), places and times of events.

I spoke to the carer when she got back and she straightened out a few things hed said that i didnt get the jist of, or put things right that he had described wrong. According to her, re the driving, that he does manage very well. I feel it is her that doesnt want him to stop driving more than him. She told me how the pndns had altered his meds and how she hadnt agreed at the time, and low and behold it did have bad effects. She also said that this nurse had referred him for incontinence therapy when he wasnt incontinent. He does wet, but only when he is out in the cold and he cant loosen his buttons quick enough because he hands are cold.

I feel alot happier today about it all and feel reassured that the carer is in good control of it all. I reminded her that i am there and offered regular visits for shopping trips or drs appt trips. Again, she says, thankyou and yes but i know she will not ask! They want to remain as independent as possible for as long as possible. By accepting any help, this means they are not so independent. She knows though that one day help will have to be accepted but she will leavr it until then to ask.

I reminded her that the effects of his drugs are related to his diet and exercise. His exercise has improved loads and his diet has obviously decreased alot. The pdns is on annual leave until thursday and they have to wait until then to even contact her answerphone - which i think is awful. He needs his meds looking at and he needs it now, not when they are ready.

I will hold off contacting the gp or dvla or pdns until they have made contact and his drugs sorted and then see how it is all going.

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Hi, sorry to come to this a bit late, only just seen it. My Dad has Parkinsons and Lewy Body Dementia. One of his drugs certainly makes his hallucinations worse, but its also the drug that helped keep him a bit more mobile. Unfortunately he is now in a home as it became impossible for my Mother to care for him at home. They have now reduced his drugs that helped with the mobility but he does still hallucinate and although he mainly knows who we are his mental state had deteriorated. His dementia was also described as 'sun downer' which means it was worse when there was no natural light. In the early days when it started, Mum changed all the light bulbs in the house to the daylight ones, sort of slightly blue looking. Also got him a daylight lamp etc. It did seem to help a bit. He was always worse in the evenings and as winter set in you could notice the decline as well. She has a fantastic PD nurse so that helped, when he got worse mentally, he also had a psychiatric nurse as well. She advised against 'fighting' against him. Dad always saw someone he hated from work - he came in the room and was horrible to Dad, this type of thing. Mum kept saying, no, he is not here. But what worked better was Mum showing xx the door, sort of shooing him out. That seemed to help a bit. Like your Dad, mine realised that he was hallucinating but could do nothing about it. With the food could you perhaps try something like, 'well there are bugs in that bit, bit this bit looks OK to me why don't you try it?' Not sure if that might help. How hard for you, its a complete nightmare, how my Mum coped at home for so long I will never know. Dad started getting the dementia about 4 years ago, so he has managed to live quite well at home with it for that long. It was only early this year that things really worsened. I do feel for you, such a cruel disease.

On a lighter note, just looked at your profile. Great kids but what yummy dogs . I have a dalmatian (one died earlier this year), want another pup but should really wait until DC's both at school.

Thanks wags.

There is no talking dad round or tricking him or playing along that works. He just looks at the food and either wretches or describes what he can see. If i could see those things on my plate i wouldnt eat it either!

Am waiting to hear from carer who should of had some contact from pdns today after her annaul leave grr!

I suppose i feel out of control as carer does all te care managing and i have to wait to find out later. I wish there was more i could do for him, but realistically there isnt much i can do at the present time.

Yes dogs are lovely, thanks. Dog2 is only 13months now and i dont recommend it, getting another one i mean. My god he is hard work. He chews everything in my house, has emptied the kitchen cupboards of rice, ready brek and vinegar, packets of crisps. He ate my laptop power cable and a set of fairy lights. Hes had the plaster off the walls and most recently has destroyed the kids sofa! Its not like im out all day and he doesnt get enough exercise either.
Love him to bits though.