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

Haychee, I'm sure the nurse wouldn't mind being contacted by yourself given the circumstances. Sounds like your dad needs reviewed by his medical/nursing team (maybe GP too). As you say it could be his meds that need looked at and they know his individual situation so can assess accordingly. The Parkinson's Disease Society may also be a useful contact.

Id love to contact her myself but apparently she just has an answerphone system and returns calls when and if she can. Im also worried that the carer will be insulted if i interfere. I will look at parkinsons disease society.
Gp saw him yesterday and didnt really advise, just made a referral for consultant appointment which could be weeks away.

Hiya, i'm not a nurse but I was a home carer for a gentleman with Parkinsons.

he also used to have hallucinations quite regularly- for him it was very distressing as it was so very real, he did also have some level of demntia however (was difficult to ascertain what caused what for him).

I agree that you should call the UNurse- youa re a member of the family so they should lsiten to you, even if they feel they cant share the info they have with you. Also the GP might well be able to discuss general symptoms etc with you.

Please to contact the aprkinsons disease cosirty- they are very good.

Amendments to his mendication may well make a huge difference here. But also the swallowing needs to be watched, as that has the potential to become a very big issue if its not monitored.

Oha nd if the nurse doesn't reply to calls , I would seriosuly consider contacting her supervisor and making an issue of this- Parkinsons is a cruel illness that causes often immense distress for carers and family, to just nto return calls isn't appropriate imo.

Haychee, I definitely think the spec nurse needs to know there's been a change in his condition. Could you or his carer come to an agreement as to who contacts?

Am just so worried that if i do contact her that she will either not be very sensitive re: my invading the carers responsibilty, and or embarress me and bamboozle me with technical details of his medication.
What do i say? I really just want reassurance that he is recieving the best possible care and attention. To which she is going to obviously say that he is.
I spose because i have a nurisng background and my help isnt asked for i feel i should be doing more for him. His carer is elderly herself and i worry that sometimes she gets a little bamboozled by it all.

As far as I know I think halucinations are related to Parkinsons and medication can help this a lot.

Carer is going to call her on thursday (as she is on annual leave untl then).
Its difficult because she has been the main carer and does not ask or appreciate our involvement. My dad himself is embarressed by his condition and even more so now. Im just concerned that if its left to them to deal with by themselves that their voices will not be heard as clearly as maybe mine would. ie, the call on thursday, will the carer come across as requiring urgent advice or will she just be slotted in with all the other routine checks.

Check with your dad's partner first, maybe she does feel overwhelmed when she speaks to the healthcre profs and would prefer you to contact. If the nurse starts speaking in jargon then ask her to explain in plain English so that you can pass on info accurately to carer.

At some point his arer is going to need input from the family isn't she? The family i worked for (I trained as a nurse but dropped out after 2 years, horrid p2k course) were 'fortuante' in that the wiofe was extremely capable and somewhat younger, but even she ahd to buy help in after a certain stage- there really is only so much one can do oneself. At the same time, its foften very difficult for epople to ask for help as theyc an feel theya re letting their partner down.

Perhaps a visit i needed and a clear chat with the carer, about what a wonderful job she is doing, how you are so grateful that your dad has her by his side- and that you would like to make things easier in whatever small way you can,. now what can you start by doing....

Ive offered so much help in the past and have been refused or acknowledged my offer but never took me up on it. I think they are both very proud and stubborn people. Martyr (?sp) my dh would say.
The scary thing is that he still drives! Worries me to death, she cant, has never learnt and wont now. They are quite rural although have good neighbours and friends. 1year ago he had to have a medical check to decide if he was still capable of driving safely and he passed! I was enraged at the time as i know full freakin well he is a danger.
Ive shown my gratitude to her, ive offered help and she doesnt accept any. Its so difficult and a big worry.

Sorry to hear about this Haychee.

My mum used to care for my dad who had dementia, but eventually died of cancer last year. My mum used to shake off any mention of her being stressed and needing help - it was difficult to find a way in, IYKWIM, to be able to help practically.

Can you just ask your dad's partner if you can see the Parkinsons nurse?

Yes i think i will be a bit more forceful and say that i want to go along to any consultation and or meeting with either the consultant or nurse. I keep offering and get refused, so i think the time has come to take the choice out of the equation and say, "im coming with you, end of"

I think that's a good idea. You are his daughter after all and not just the next door neighbour!

Thanks for your support weinstein. We have not been able to communicate on any other thread before now. I really appreciate that you can put that aside for a little support for me. Many thanks.

I will be going to see dad and carer tomorrow morning.

It sounds like Lewy Bodies (sp) which a lot of people with Parkinsons get. My FIL was the same

Lewy bodies??? What is that?

here I have just googled and found this info

What is Lewy Body disease?
Although Alzheimer's disease comes to most people's minds when they hear the words "dementia" or "senility," mention Lewy Body Disease (LBD) and the response is likely to be, "What is that?" Even MDs may not be familiar with it, unless they specialize in geriatrics or neurology. Lewy Body Disease is actually the second most common cause of dementia, accounting for up to a third of all cases, according to autopsy reports. There is not yet a cure, and symptoms tend to worsen over time.

Lewy Body Disease is comprised of a spectrum of diseases involving an array of dementia and motor symptoms. It is commonly referred to as:

Lewy Body Disease
Lewy Body dementia
dementia with Lewy Bodies
diffuse Lewy Body Disease
Identifying Lewy Body Disease can be challenging if one is unfamiliar with its pathology, because the dementia is similar to that of Alzheimer's, while many symptoms appear to mimic Parkinson's. However, there are notable distinguishing characteristics. Unlike people with Alzheimer's or Parkinson's disease, patients with LBD exhibit:

strong psychotic symptoms (hallucinations)
extreme sensitivity to antipsychotic medications
day-to-day symptom variability.
In addition, Lewy Body Disease is twice as common in men as in women (Alzheimer's occurs equally in both genders) and is rarely genetically linked.

My fil was diagnosed with Parkinsons/Lewy Bodies Disease.

So maybe he doesnt have parkinsons at all? just has been confused with LBD?
Or is concurrent with his parkinsons.

We were never sure with FIL. It is difficult to tell the difference I believe. Or maybe you can have both, I was never sure of that or not?

He used to have hallucinations and insomnia but also the shuffling gait when he walked and stiffness/paralysis.

TBH he had had it about 10 years as far as I can remember before Lewy Bodies was mentioned by doctors.

Yes dad has a definite shuffling gait, expressionless face and swallowing difficulties.
So sounds very similar to your fil. Its so sad and i wish i had a magic cure.

It is truely a horrible diesease (both of them!)

My FIL died recently and TBH it was a blessed release for him.

Up until quite recently my dad has been quite normal apart from his general lack of mobility either parkinsons or coronary related. But totally with it in mind. Not so good with speech, but you could understand that he had his marbles behind the difficulties in getting his words out. This current episode is quite a worry not only because he refuses to eat much but also because he still drives. It has been quite a rapid decline of his menatl state, and am keen to discover if altering his meds wil help.