So frustrated with Dad who has early PD please help


#1

Hi there everyone, first time post on the forum. My Dad has early stages Parkinson disease and has been placed on the medication Procyclidine. My brother and I want to get his health and family affairs organised before his PD potentially gets worse latter in his sixties and early seventies. He lives by himself and we would like to be both appointed as power of attorney for his health. We worry that at some point he may not understand what is best for him and would like to get these things in place prior to him getting further away from us. In order to organise this we need him to communicate with his lawyer, sending a simple email or making a call. We are getting really frustrated as a small task such as sending an email or communicating over the phone with a lawyer seems very challenging for him (something that would take us half an hour takes him weeks and weeks to get done) . We understand that his medication can make him feel very foggy and when too much is asked of him he feels stressed and overwhelmed. A friend suggested that maybe we should get a Neuropsychological assessment done to help us understand how the Parkinsons affects his cognitive ability and decision making. Has anyone got any advice or shared sucess in this area that we are struggling in…


#2

It is hard to see father with Parkinson’s. I know. I have 11 years of parkinson’s and am a father of 2! His meds should not be making him groggy. He should still be autonomous (“in early stages”), There may be a cognative aspect but for sure there is a high psychological element which happens far too often with Parkinson’s. You may find This document useful to understand what is going on. If I can help more, just mail me from the linked page


#3

Hi @jimmynewzealand,

Welcome to the forum.

This is a highly engaged community so I’m confident you’ll receive more helpful advice from our members soon. I’m sorry to hear that your dad is losing the capacity to make decisions for himself, I’m sure this can’t be easy for him nor the rest of your family.

We have information on the power of attorney on our website with a lot of information that will help with your current situation here - https://www.parkinsons.org.uk/information-and-support/losing-capacity-make-decisions.

With regard to your dad’s medication making him feel foggy, I would encourage you to raise this concern with his GP or Parkinson’s nurse as they may need review his medication or prescribe additional ones. Additionally, in order for you and your family to get a better understanding on how Parkinson’s develops and it affects ones cognitive ability, you may also find helpful to explore our ‘newly diagnosed’ section on our website which includes this type of information as well as an extensive introductory guide that you can download. You can find it here - https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons

Lastly, for more support on this, you are more than welcome to contact our helpline on 0808 800 0303.

Best wishes,
Reah
Forum Community Manager


#4

Hello and sorry to hear you are having problems. If I might offer an alternative view for you to consider, bearing in mind I only know what you have written so may not be relevant to your circumstances. Looking at it from your father’s perspective might it perhaps be that he is not ready to sign these documents because he isn’t ready or doesn’t want to think there may come a time when he will no longer be able to make his own decisions. Not sending the email or making the call may be his way of trying to slow things down. A it happens I agree with your logic and have put POAs in place, but you can only move at the pace your father is prepared to go. It may be the sensible and practical thing to do but it is your dad who has to live with the PD and you are asking him to accept he could become incapable of managing his affairs. That is a huge deal. It might just not be the right time for him.


#5

@jimmynewzealand sorry to hear of your frustrations. I can’t speak as a carer, but as a person with Parkinson’s I would agree with @Tot. It’s brilliant that you and you brother are looking ahead and I’m sure your father appreciates it or at least will do in the future but maybe at this stage he may feel a little cornered as well.
I can only talk from my viewpoint but having been diagnosed for nine years if someone came to me suggesting an LPA because of my Parkinson’s I’d probably drag my heals too. That said I do have both types of LPA in place because it’s sensible for this to be done.
Maybe the priority should shift to emotional support initially as diagnosis its quite shocking at first and you do think the world has ended at first. Once he has had time to process this he (and you) will probably realise that nothing is going to change for the foreseeable future.
Agree with previous replies about medication, it doesn’t sound right that it’s makinh him drowsy, get it checked out. Hope this helps.


#6

Hello Jimmynewzealand
This is Tom USA. Look up the side effects of Procyclidine. What happens here in the states and possibly where you live. Is lack of communication between doctors. As a PWP meds prescribed have a big effect on us. (mood,alertness,difficulty to urinate,(men can get bladder infections) So my opinion having gone through lack of communication. I would talk to your movement specialist. They know Parkinson’s. Just an opinion.
Tom


#7

Go with him, I have early onset PD and it leaves me feeling truly helpless sometimes. These type of task, communicating by phone or email whilst one of many for you every day can, be the only thing we achieve all day in this particular sphere.
Patience is vital.