Mr Edwards went to a cafe in a charming garden centre today, then walked around looking at the bedding plants, enjoying the riot of colour. I know this because a support worker relayed to me how cheery he was, ambling about seemingly aimlessly, chattering away to her with real zeal and passion. Mr Edwards has always been an enthusiastic gardener.
He has Parkinsons Disease (PD) which affects him in three particular ways.
Firstly, his speech sounds slurred. Although he's readily understood he's very self conscious of this because he reckons he doesn't sound like himself but worse, he reckons he sounds drunk. Happen he's right. I don't think his dysarthria sounds like drunken slurred speech, but I'm tuned in to medicalising stuff and in critiquing nuances of speech that means I sift through a number of reasons why he's slurring speech whilst folk in his neighbourhood would instead probably assume he's drunk. He lives in a hellishly deprived area. It's a statement of fact that lots of people are drunk lots of the time. He feels awfully self conscious that, if he speaks, folk will presume he's a drunken sot.
Secondly, his gait is poor. He staggers and sometimes falls. Steps are a nightmare for him. This compounds his belief that folk will see him as drunk. It also concerns him, whilst he's out and about, that he might freeze or fall in an awkward place. Tragically, he's not fearful that he'll come to harm through this, no, he's fearful that someone else will. He's terrified he could collapse in the road and cause someone to swerve and have an accident, all because of him.
Thirdly, as sadly everyone with PD will if they live long enough, he has developed dementia. It's expected and inevitable, PD is a progressive neurodegenerative disease so only goes one way, but for Mr Edwards his dementia's responding well to medication and he's just a little muddled with dates, a little forgetful of times (was it 2 days ago we last met up, or was it a week?) and a little impaired with recent declarative memory. Procedural memory, such as riding his bike to his allotment, is fine. So's managing finances. Orientation in his locale is fine (he's lived there all his life so knows his way around effortlessly). Judgement/decision making is still sound and has improved significantly on galantamine.
An Occupational Therapist sorted some practical changes for him, both in his home and his allotment and with tools. A Social Worker sorted out practical support, with a care package of home carers twice a day. A clever and devoted chap within our local Alzheimers Society branch has sorted out his benefits and finances. Nurses in our memory clinic have done exhaustive memory testing initially (to inform diagnosis) and periodically (to assess efficacy/effects of galantamine). A CPN gave advice to him and to his PD Nurse, several times, over a period of a month or so, with oodles of practical changes made consequent to this. She then did some CBT with him over four months. Yes yes, I know he's got dementia, but that doesn't preclude CBT. Indeed the behavioural stuff and experiential learning over a month or so, with a fortuitous ability to forget the bad things in the months before this, meant Mr Edwards regained significant confidence and competence through the CBT. Underpinning this, a Support Worker has been assisting him in maintaining function (e.g. going to his allotment, going to shops, using a bus for journies he can't cycle, going to his GP and hospital appointments for things that he'd been putting off, visiting friends he'd worked with for decades, getting to church).
I saw him at his home with a CPN (and the results of her initial assessment) and memory clinic assessment, the PD Nurse's referral details, the subsequent GP referral letter and blood results and the results of the CT imaging and ECG I'd requested. We'd considered a DAT scan but it wasn't necessary. I spoke to him at length, assessed his mental state, assessed areas of cognition that had been equivocal on memory clinic testing and reviewed all the results. The diagnosis was obvious. He had PD dementia.
We discuss options. It doesn't take long. My colleagues have already paved the way to this point, with ongoing discussion at each stage, by each person, so my words are simply the concluding confirmation, the distilled summary.
In my corner it's only Consultant Psychiatrists who start acetylcholinesterase inhibitor treatment, so having discussed medication out comes an FP10 and we start galantamine.
I've not seen him since. I hear about him several times a week, through working in the same office as the Support Worker and CPN. In his care I've been involved in over 20 conversations, from dicussions at the point of referral then assessment then intervention. I've consistently directed and influenced his care. But in terms of face to face contact, in truth, it's the support worker and CPN who've effected change and in his words, "Given me my life back."
Yet, this week, he gave the Support Worker a gift wrapped bottle of wine and card to give to me. The unqualified Support Worker has done the most work, yet she didn't get anything. The qualified nurse (a CPN) has done the next most amount of work, yet she didn't get anything.
I have a series of conversations with staff and see him once. I can't claim that's a lot of work.
Doesn't seem quite fair.