I’d far rather have the action taken by our governmentthan the UK’s when it comes to flattening the curve on coronavirus, and the British response reminds me of this 2018 post.
Just because the chief scientific adviser there has a knighthood and talks posh isn’t a reason to trust him, his judgement or even his “expertise” if science says otherwise.
When my father went into hospital in September 2019, the doctors’ lack of treatment—because they determined he was ‘dying’ and that that was sufficient reason to deny him the essentials of life and that it would be a ‘miracle’ if he regained consciousness, whereas my partner and I determined he was ‘dehydrated’ (we were right)—I was forced to ask the palliative nurse about this so-called ‘policy’. Dad did, after all, wake up after we demanded he be given saline and sustenance within hours, leading me to wonder just why a team of doctors were so obsessed with killing him.
‘Who’s next?’ I asked.
She looked at me quizzically.
‘Who’s next? Is it the differently abled? Homosexuals? Jews? I’m sorry, but the parallels are all too evident to me.’
During this time, a Dr Mark Jones in the UK came into my Twittersphere and we exchanged a number of Tweets.
Mark essentially said that this was an unwritten UK government policy, and showed me numerous examples of elder neglect and abuse in his country. Maybe I should say ‘our country’ since it’s the only one I have a current passport for, having got too busy to renew my Kiwi one (not that it would have much use at present).
The reasons were financial. The fewer OAPs there were, the less they’d have to pay out in pensions.
Therefore, it was no surprise that Dad’s treatment at a British-run rest home compared less favourably than Te Hopai, where he wound up, although in Bupa’s defence they have taken our complaints seriously, apologized, and have invited us to see the improvements.
The less generous might have branded Mark a conspiracy theorist but Sir Patrick Vallance, the UK’s chief scientific adviser, seems to advance a position directly compatible with Mark’s observations.
From what I can make out, he’s quite happy for the UK to get infected with coronavirus with the expectation that 60 per cent of the Union will develop immunity—although from all my reading of this approach, a proportion of older people who contract it will die. It appears a callous approach to just let a disease come—the UK isn’t closing its borders or banning mass gatherings, but instead is welcoming its microbic visitor with crumpets and tea. Yes, they are advising those who feel sick to self-isolate, and that is sensible, but it’s the rest that makes little sense.
Prime Minister Alexander Boris de Pfeffel Johnson preempts this as he said without emotion, ‘Many more families are going to lose loved ones before their time.’
Even Jeremy Hunt appeared to break ranks with the government in one interview.
The likely result will be a thinning out of British OAPs.
When I first told my partner this, she was shocked, but I advanced my own conspiracy theory: ‘If you begin with the premise that Dominic Cummings is out to destroy Britain—its institutions, and now its people—then all of this fits his agenda.’
The new Chancellor of the Exchequer, Rishi Sunak, after Sajid Javid found himself in a position where even he couldn’t go along with what was being peddled by 10 Downing Street, making you wonder just what horrors await, will doubtless be thrilled at the savings to the UK pension fund.
PS.: Thank you, Tomas Pueyo (the man in the screen), for reacting the way you did to Prof John Edmunds’ position that the UK has given up on containing the virus and that people will die. You have spoken, silently, for many of us.—JY
I’ve had a go at software makers before over giving us solutions that are second-best, because second-best has become the convention. While I can think of an explanation for that, viz. Microsoft packaged Windows computers in the 1990s with Word and Outlook Express, it’s harder to explain why peripherals haven’t been human-centred.
I thought about this with my monitor. It’s “only” 24 inches, despite being QHD. But it works for me, as 27 or more would see me move my neck to view the corners. I was always happy with the 24-inch Imac: I had no desire for it to be larger. If I had 27 inches I might need to sit further back, cancelling out the upsizing. Despite saying this, I can see in some situations where people would be quite happy with 27 (and even larger ones for coders), but it begs the question of why there aren’t more 24-inch QHD monitors on the market. My friend Chelfyn Baxter believes it is the optimum size for productivity (granted, he told me this over five years ago, though I still see little to fault him). Are our suppliers driving us to larger sizes, just as car importers are driving us to automatics here? (The latter is not backed up by any research on preferences, to my knowledge.)
The same thing applies to keyboards. To me, the optimum width of a keyboard is around 40 cm. Any wider, you’re reaching for your mouse and causing repetitive strain injuries. I’ve stuck to my 40 cm rule for a long time and haven’t had the sort of pain I had in the late 1990s and early 2000s when I had a standard-width keyboard. The mouse is roughly where I expect it to be, and I wouldn’t object if it were closer still. Again, it begs the question of why 40 cm isn’t a standard if it saves us from pain.
Then there’s the mouse—I now use a Microsoft Intellimouse 1.1 from the early 2000s after my 2005-made, 2015-new one gave up. I know there’s a lot of comedy around the US president having small hands, but we’re no longer in the sort of society whose products change to appease a leader. But regular mice are awfully small, a trend that seemed to have begun in the 2010s. I can’t hold them and maybe I have large hands, but I can’t be alone. In so many places I visit, I see some very uncomfortable hands try to grip a small mouse. I learned that was a bad thing in the days of the round 1999 Apple USB mouse (it wasn’t the Imouse), which created a trade in adapters that snapped on around it.
Fortunately, mice manufacturers do offer larger sizes, recognizing that not all of us accept a child’s size as the standard. Here I can understand why mice have downsized: the manufacturers attempting to save a few bob and forcing more of us into it. However, there must be a decent part of the population who think, ‘I’ll be uncomfortable with that. I won’t buy it,’ and let the market move accordingly.
I wonder how much more comfortable and productive a chunk of the population would be by following a few basic rules: have a monitor—whatever size suits you—where you limit strain on your neck; have a keyboard around 40 cm wide or less; and have a mouse which your hand can rest on (and keyboard wrist rests and mouse wrist rests to suit to make you comfortable). But I know most of us will just go, ‘The default is good enough,’ and unnecessarily suffer.
Speaking of practical, I hope Mudita gets its designs on the market sooner rather than later. Who needs pizzazz when we all value simplicity? Technology serving humanity: what a novel idea! Here’s how we can help.
You’d think that after the Bupa nurse said Dad’s dentures were found, that would be the end of it.
I headed there this afternoon to discover that they only found his upper set. The lower ones are missing.
Again, no one there thought of putting him on soft or purée food till my partner and I got there.
No one knows where these lower dentures are and the only communiqué from Bupa is that they are now ‘confirmed to be missing’ and I am ‘welcome to write a formal complaint so it will be investigated fully.’
I shouldn’t need to write a formal complaint for a full investigation to take place and for the dentures to be replaced.
I have never seen Dad this weak in his life and he is severely depressed as a direct result.
I hold all parties who put him in this position responsible, and as of Monday some sharp formal action will take place.
My GP has been in touch and he will try to get an urgent referral to the psychogeriatrician.
Allies on Twitter have been remarkable and Jane suggests the health and disability commissioner should get involved. I couldn’t agree more, but first I need to get him out of there, into somewhere safer and more professional, and get dentures made urgently.
I don’t think you need a law degree to see that the ingredients of a case in negligence are now met.
Above: Dad and I wait for his psychogeriatric ‘re-evaluation’ on November 30, or, treading a path of bullshit.
Even in the rest home, Dad remained very protective of the other residents, so much so that there was an incident involving a day care resident in late November that saw the home insist that he be re-evaluated.
I said to the head nurse, ‘I just want him to be given a fair go. What are the chances he will be allowed back there?’
‘It depends on what the psychogeriatrician says.’ I sensed the insincerity in her voice.
For when the psychogeriatrician from Wellington Hospital called (actually, he told me he was a ‘psychiatrist’ and to this day I remain unsure if a psychogeriatrician or psychogeriatric nurse has seen him), he told me that he was told that they didn’t want him back.
Lie number one, then.
This is despite a course of medication that has actually helped Dad with his alertness.
Of course, during this whole evaluation, Dad contracted pneumonia, for which he had to be on a course of Augmentin.
The ‘psychiatrist’ also told me that he would prescribe Risperidone to Dad as the original course of medication that I had discussed with our GP, Donepezil, was, in his opinion, ineffective.
When speaking to the nurses and health care assistants at Ward 6, I was always informed that Dad was taking Augmentin and Risperidone.
He was still having balance issues and a severe cough but deemed ‘medically fit’ and had to leave the hospital.
The social worker worked extremely hard to find a dementia care unit for him. I have him on a waiting list at one home, but till that place is free, the closest is Bupa in Whitby.
I’m now reading his discharge sheet, to discover that he is ‘Best suited for dementia level care or high dependency care if BPSD cannot be treated successfully.’ Note the word if.
Frankly, they haven’t had a chance to see if any course of medication has helped his BPSD. I have witnessed it, to my knowledge, they haven’t.
Everyone seems dead keen to get Dad into dementia-level care that he’s being pigeonholed.
So he was, in my non-medical opinion, prematurely discharged and shipped off to Bupa.
And the discharge sheet doesn’t mention anything about Risperidone other than that it is PRN—prescribed only when needed. It doesn’t appear to be a regular medicine.
So, was I lied to at Wellington Hospital or is the discharge sheet bullshit?
Lie number two, then.
I’m not saying that Dad won’t eventually have to go into dementia-level care but it doesn’t seem necessary, and the Bupa staff agree.
Today I discovered him agitated because he was hungry.
The staff said he hadn’t been eating.
He was brought his dinner but I noticed that his dentures were missing.
No shit, you took his dentures so he couldn’t eat.
But no one put two and two together.
Seeing I was there he made a valiant effort to try to eat some cold meat they had served him and choked horribly on it. I had to stop him and said I would enquire what was going on.
The carers made a good effort looking in his room to no avail.
No one was at reception but fortunately there were some cellphone numbers posted on a notice there. I texted one of the RNs, who, despite not working today, made a massive effort to find out what had happened. God bless this man for digging.
Turns out they took Dad’s dentures for cleaning last night and no one thought to return them. They were in the office, locked away.
All of this has me deeply angry that they think they can treat elderly people like this. And how poor the communications are because they aren’t treating them as human beings.
If I wasn’t a daily visitor—and driving from Rongotai to Whitby is no easy task—then would Dad have just starved?
He has aphasia so he can only point and show if he’s upset.
One RN told me he was agitated earlier today. Again, no shit.
I’ve texted the social worker my concerns. Discharging a patient prematurely is one thing but taking him to a facility where they have effectively starved him for a day is cruel and negligent.
All this sprung because of the clinical and inhuman way he was marginalized in late November.
It set off a chain of events that give you very little confidence in the treatment of Alzheimer’s and dementia sufferers.
Despite the kindness of the HCAs and the staff at Wellington Hospital, there are clear gaps here which I wonder whether others might question.
I will advise the GP tonight as he and the social worker have batted in our corner consistently.
He needs to be out of the clutches of a clumsy multinational corporation and put somewhere actually consistent with his level of dementia.
And if I don’t get some satisfactory answers for once, then things will get … interesting.
Above: Dementia Wellington’s support has been invaluable.
Today my father turned 83.
It’s a tough life that began during the Sino–Japanese War, with his father being away in the army, and his mother and grandmother were left to raise the family on their land in Taishan, China.
In 1949, the Communists seized the property and the family had to start again, as refugees, in Hong Kong.
Ever the entrepreneur, during the Vietnam War, Dad and his business partner, an US Army doctor by the name of Capt Dr Lawson McClung, set up a mail-order business for deployed troops. As I recall it, Lawson said that he would be able to secure jobs for my parents—my late mother was a nurse—at his stepfather’s hospitals in Tennessee. We either had a US green card, or one was merely procedural.
My mother realized we had family in Aotearoa and I remember going with her to Connaught Tower, to the New Zealand High Commission. I didn’t know what it was for, but filling in the gaps it must have been to secure forms for immigration. As Plan Bs go, it was a pretty good one.
In 1976 came another move as we headed to New Zealand, originally on holiday, given that my grandfather had taken ill whilst here. As we flew in to Wellington, Dad pointed at the houses below. ‘Those are the sorts of houses New Zealanders live in.’ I thought it was fascinating, that they didn’t live in apartment blocks.
That first night here, on September 16, 1976, it was Dad who tucked me in, which at this point wasn’t typical: it was usually my grandmother who did this. He asked if I wanted to see the two Corgi toy cars that my grandmother had bought me prior to the trip, which I could have if I behaved myself on the flights. I did. He took them out of the luggage and I had a brief look at them. This was an unfamiliar place but it was just a holiday and things would be back to normal soon.
It was during this holiday that word came that our immigration application had come through. My parents regarded our presence here as serendipitous. They neglected to tell their four-year-old son that plans had changed.
For the first 18 years of my life, I regarded ‘the family’ as being my parents and my widowed maternal grandmother, who lived with us ever since I could remember—and I remember an awfully long time. We even had a photo taken around 1975–6 of the four of us, that I just remember represented everyone dearest to me.
As ‘the family’ lost one member to a stroke brought on by Parkinson’s disease and complications from diabetes, and another to cancer, by 1994 it was just Dad and me.
At the beginning of the 2010s, Dad had a bout of shingles. By 2014 he was forgetting individual words, and I insisted he get checked out for dementia. Around the time of his 80th birthday, in 2015, the diagnosis from the psychogeriatrician was formal, although he could still speak with some stuttering and one or two words unreachable by his brain. The CT scans showed a deterioration of the left side of his brain, his speech centre. Within half a year there would only be one or two words per sentence that were intelligible.
The forms for an enduring power of attorney were drawn up as 2016 commenced. He was still managing, and he had his routines, but in mid-2018 we decided he should get some respite care.
He wasn’t happy about this, and it took four hours of persuading, as well as a useful and staunch aunt, who got Dad to put on his shoes and head up with us to Ultimate Care Maupuia.
We had thought the second visit in late July would be easier but it took 19 hours over two days, an experience which we do not want to repeat.
Dad had lost the ability to empathize with us and was anxious and agitiated. While he insisted he could look after himself while home alone, there were signs over the last year that indicated he could not. He fell while having the ’flu in mid-2017 and Amanda and I came to a house with all its lights off. We had no idea how long he had been down. By 2018 he would cry if left home alone. Even at his most insistent that he could look after himself, we returned after the first day of trying to coax him to Maupuia to find that he had not eaten.
The second day was when I called everyone I could think of to find a way to get to respite, since we weren’t going to be around to look after him.
You name it, I called it, Age Concern aside. Dementia Wellington, the police, the rest home, Wellington Free Ambulance, Driving Miss Daisy, Care Coordination, Te Haika, and so on. I spoke to 11 people that day.
Te Haika said that the issue wasn’t mental, but legal, which was about as useful as telling an American Democrat that Donald Trump was the Messiah.
Driving Miss Daisy said that I wasn’t in their area but a colleague was, not that I ever heard back from that colleague.
Dementia Wellington, the police, and Free Ambulance were brilliant, as was my lawyer, Richard Brandon of Brandons. Our GPs at Kilbirnie Medical Centre were also excellent.
The up shot was that Free Ambulance could take Dad if the enduring power of attorney was enacted, and that would take a declaration of mental incapacity by the GP, which was duly written. He was also good enough to prescribe some medication to calm Dad down.
However, because it wasn’t an emergency situation, there was no telling when Free Ambulance could come by.
It did make me glad that they were one of the charities I gave to this year.
However, you don’t ever imagine a situation where you effectively drug your Dad to be able to put his jacket on and take him to a rest home for respite care. I felt like part of the Mission: Impossible team, except the person being drugged wasn’t a Ruritanian dictator, but someone on the same side. When I say Mission: Impossible, I don’t mean that series of films with Tom Cruise, either.
On September 16, 1976, you didn’t think that in 42 years’ time your Dad would have dementia and you’d need to break a promise you made years ago that you would never put him in a home.
You also feel that that photo of ‘the family’ has been decimated, that you’re all alone because the last adult in there isn’t around any more for you to bounce ideas off and to have a decent conversation with.
I realize I hadn’t been able to do any of that with Dad for years but it feels that much more painful knowing he can’t live in a place he calls home presently.
And you also realize that as a virtually full-time caregiver who has cooked for him for years—and now you know why I didn’t reenter politics in 2016—that his condition really just crept up on you to a point where what you thought was normal was, in fact, not normal at all.
You also realize that the only other time he was compelled to leave his home without his full volition was 1949, by a régime he had very little time for through most of his lifetime. You don’t expect to be the next person to have to do that to him, and there’s a tremendous amount of guilt that comes with that.
Earlier this week, our GP reissued his letter in ‘Form 5’ (prescribed under the Protection of Personal and Property Rights Act 1988), which I drafted, since these procedures aren’t altogether clear. It makes you wonder how people without law degrees might cope. Tomorrow I will meet with Care Coordination and see if Dad can be reassessed based on his current condition. He was only very recently assessed as not needing long-term care so it will be interesting to see if they accept that he has deteriorated to this extent. I’m not a Mystic Meg who can make a prediction on this.
The rapidity of Dad’s change—one which he himself noticed, as years ago he would complain that his ‘brain felt different today compared to yesterday’—has been a surprise to us, although mostly he is happy at Maupuia and interacts positively with the staff. It’s not all smooth sailing and there are days he wonders when he can come home.
And I find some solace in that his father, and his mother-in-law, wound up in care for less. My grandfather had PTSD from the war and was unable to cook for himself, though even at the end he was bilingual (being educated in the US) and had successfully quit smoking after 70 years. My grandmother needed care because of her insulin injections but was also mentally fit.
But part of me expected that I’d see it through with Dad to the end, that these rest homes were some western thing that separated families, and here is part of that immigrant experience.
The reason you didn’t see as many Chinese New Zealanders on welfare wasn’t down to some massive savings’ account, but a certain pride and stoïcism in being to keep it to yourself. You’re in a strange land where there’s prejudice, and that’s often enough for families to say, ‘F*** everyone else, we’re getting on with it and doing it ourselves.’
And that’s what we did as ‘the family’. We fought our own battles. Dad was once a helluva correspondent whose letters used words like proffer and the trinity of ult., prox. and inst., and plenty of officials got the sharp end of his writing. When Mum got cancer we brought in our own natural medication because westerners couldn’t fathom that the same stuff cleared my grandfather’s liver cancer in 1976 and healed several other members in the whānau. Dad sacrificed everything to try to save Mum and that was the closest example I had of what you’d do for someone you love.
When you’re deep in the situation, rationality goes out the window and you’re on autopilot—and often it takes serious situations, like two days’ angst and stress of trying to get someone into respite care, to make you think that staying at home isn’t the best for someone who did, even though he won’t admit it, thrive under rest home care.
We know that if we left it even later, it would be even tougher to get Dad into care and he would resist his new surroundings more.
Today’s lunch at Maupuia was curried beef on rice in recognition of Indian Independence Day, a much nicer meal than what I might have made for Dad.
He has staff to hug and laugh with even if I have no idea where he’s putting his dirty undies.
And while aphasia means he hasn’t made any new friends yet, I have faith that he’ll do well given the circumstances.
It’s those circumstances that mean the situation we find ourselves in, with Dad at the home, is one which we’ll roll with, because, like 1949 and 1976, forces outside our control are at play.
I’d love to make his Alzheimer’s go away given that I already lost one parent prematurely.
My mind goes to a close friend who recently lost her mother, and her father was killed in a car crash around the time my Mum died. Basically: not all of us are lucky enough to have both our parents peacefully go in their sleep. Many of us are put through a trial. And there’s a real reason some of us have been hashtagging #FuckAlzheimers on Twitter, if out of sheer frustration.
For those who have made it this far, here are the points I want you to take away.
• Immediately upon finding out your parent has dementia, get your enduring power of attorney sorted out, for both property and personal care.
• Dementia Wellington is an excellent organization so get yourself along to the carer support groups, second Monday of every month. Dementia New Zealand can’t help at this level.
• Care Coordination has been very helpful and their referral to Dementia Wellington proved more effective than phoning—however, I should note that the organization changed for the better between Dad’s original diagnosis in 2015 and how they are today.
• You do need ‘Form 5’ from your GP or someone in a position to assess your parent’s mental capacity to kick off the enduring power of attorney.
• It’s OK to cry, feel emotionally drained and ask your friends for support. It’s your parent. You expected to look after them and sometimes you need to let others do this for everyone’s good. It doesn’t mean you love your parent any less. It also doesn’t mean you are placing yourself or your partner above him. It just means you are finding the best solution all round.
Dad is still “there”, and he recognizes us, even if he doesn’t really know what day it is, can’t really cook for himself, and doesn’t fully understand consequences any more. I’m glad I spend parts of every day with him while I’m in Wellington. And while this wasn’t the 83rd birthday I foresaw at the beginning of the year, he is in a safe, caring environment. I hope the best decision is made for him and for all of us.
