And it’s ZOOM to blame again. Zooming blooming zoom.
I enjoy some ZOOMies but not all.
I like the ones where we have a chat and catch up. When we tell each other what we’ve been doing to occupy our isolation time.
Not what we’re missing.
What we are enjoying.
Not what we’re hating.
I know that this isolation is a test, and at the best of times, and with a known deadline, it would be hard.
And we have not got a deadline. I expect minimum 13 weeks. Possibly nine months. Possibly longer, until there is a vaccine to protect me/us.
There will be darkness and light, false dawns and very real nights.
There will be deaths. People we know. People we love. People we say hello to often and pass on our ways.
I have just had an email from my CCG Chair, replying to a letter of a month ago, offering a telephone meeting about a concern regarding dementia and a care closer to home project. But I have replied that I am suspending all my engagement on this until the big V has passed.
He and his staff have much more important things to do now. I know, as I get inside info from my NHS wife.
We, living with dementia, just have to get on with IT. Whatever our particular IT is.
Today on a ZOOMy, I listened to a lot of people expressing concerns about difficulties with this isolation, with lack of contact or care from health or social care, with difficulties getting food supplies and meds.
Yes, it is hard. But these are still early days. Systems are only just being thought through and set up.
It takes time to organise 700,000 volunteers.
My little Parish Council very quickly and excellently sent cards to us all with a contact number for help getting food or medical supplies delivered. My neighbours, bless them, ask if we need anything if they are going shopping and buy my diet tonic water (tastes good without gin and is a good evening substitute).
There will soon be groups of volunteers attached to pharmacies and GP surgeries, and supermarkets everywhere.
We may not have the care and support some of us need. We definitely won’t have the face to face company and touch that we all very much value. The travel that provides variety, challenge and confidence.
But it does me no good to think about how things ought to be. How things might be in a perfect or even imperfect world.
And it does me no good to dwell on this shitty disease, the nightly mareish dreams, and the things I find difficult.
Yesterday I put pepper into my bread mix; too late, I thought.
Today I fumbled a roll of toilet paper and dropped it into the loo.
Tomorrow…who knows. A quarter pound of tea in the pot perhaps, again.
No, I am feeling much more relaxed than for years. Hugely relaxed. Can’t believe it.
I’m not angry and frustrated about my CCG.
I’m not worrying about an agenda for an upcoming meeting. Or whatever I committed to doing at the last one.
The evenings are getting lighter and, sometimes, warmer.
My seeds are growing.
And – and this is key – I am learning new skills and polishing up existing ones.
I am whittling and carving…or learning to at least. Collecting drift wood along hedges, through woods, around fields.
I’m taking photos again, after such long, cold, soaking days and weeks of grey, miserable, stormy walks.
Processing the pictures, editing, altering, tweaking…to get new ones in ‘my’ style. Just an hour here and there is very satisfying.
Next job is to order some prints and then make frames out of found, combed, driftwood. (Look on pinterest…)
And I’m going to tune my piano. That’s going to be…um…interesting.
So my message is…
Don’t dwell on difficulties. Find something new to do.
Origami. Whittling. Knitting. Painting by numbers. (Some demanding but comprehensive kits out there, esp from USA.) Write letters by hand. Make models…again, there are some interesting kits online, and not just airfix. Jigsaws (aaarrgghh…)
Get good at something simple and it becomes absorbing as you take it further. Become an expert. Then share it. Teach someone else (virtually for the time being).
We could have ZOOMy knitting sessions! Now actually that would work.
I need to focus on positives, to be optimistic. And I need to avoid and keep away from pessimism, and what’s wrong with the world and with my life.
Take exercise, inside or out.
Get Alexa to help with ideas and singalongs. Or even ‘jokes’.
Find something to do with your hands (and, therefore, brain).
Talk to people you know, virtually. Seeing the person makes it so much better (and easier when you have brain disease).
Ask not what society can do for you…but what you can do for yourself and others.
Just, I dunno, just think positive and do things.
Just do it. You can. You really can.
[I hope this blog does not upset people. It’s not meant to be a lecture, rather an exhortation and encouragement.]
Lock up your daughters, and your sons. Your wife and your husband. Your mum and dad.
Lock down yourself.
Turn the radio off if you want to keep sane amidst madness. Or at least the news.
Does it matter much which day of the week it is?
(Anyway, who decided we should have a seven day week? Why not a seventeen day week?
Why not 7 months of 52 days each? With a requirement to rest every fourth day?
I have taken off my watch. Yes, I still have time on my iphone, but it does liberate a little.
I’m not enjoying reading the Guardian as much, since it is stuffed with Big V stuff. I must look harder for the other things of life.
ZOOM is taking off big time.
I even got an NHS Trust using it because the staff working from home couldn’t get the official webinar thing to work for them. They love ZOOM now. As do my family.
And I can mute them when they say things I don’t want to hear, if I’m quick enough.
I have got over my initial shock and discombobulation that was last week. It will return from time to time, but I am getting used to new routines, or lack of routines.
And I have today carved my third (working) whistle. Not an expert yet, but one day…
I will soon have to move on to something a bit more demanding, which is frightening, as I have very little pictorial artistic imagination. So patterns are good; snake heads pretty much impossible.
I had wobbles on a couple of DEEP ZOOM meetings this week. Everyone was talking about all the great ideas they have to keep people in contact, running singing online sessions, or, for god’s sake, radio shows! While I feel…actually, I don’t think I have the resilience to do that.
Oh yes, I am running a weekly ZOOM meeting for DEEP groups on Shropshire, or anyone else with dementia who wants to join. Publicised it on local radio this morning. But as I said in a meeting, you can have too much webinaring. Staring at the screen, with uncertain sound and transmission delays. It is great, but we have got to keep sane in this time of Big V.
I am blessed to have a huge garden, and lanes and fields to walk around.
I am blessed to have my younger son and daughter-in-law living eight miles away, and driving collection errands for us.
I am blessed to be able to grow plants and vegetables, to sit out in the sun, to hear the birds as they grow in confidence this spring.
And I am blessed to be able to forget the whole damn Big V thing if I choose to.
Cos I don’t see anyone!
It is so quiet. Extraordinarily quiet.
So I put together a few simple suggestions for people living with dementia and their families during this time of plague. These are pretty much based on things I have heard in recent ZOOM meetings.
Keep exercising your faculties. Keep speaking, even though there may be no one to listen. Read a book aloud. I suggested to one lovely woman she should read Wordsworth’s The Prelude, since she loves the Lake District. (You know who!) And why not record sections and send them to friends. It’s good to have a reason.
Send them to me. I’d rather listen than read it all.
Write real letters, by hand. Good motor control and you probably think more as you write.
I am going to write a letter to my children, just in case…put it in the safe.
Play cards, the old games like snap and rummy. Play dominoes.
Learn a new skill. Mine is carving wood that I find on my walks. But you could learn to recognise bird songs. Or about law. Or how to sail a boat. Or the latin names of the plants you see on your walks and in your garden.
Do the quick crosswords (if you can stand the torture).
Take a virtual tour of art galleries and museums.
Just for fun.
Just for fun. Isn’t it nice to remember those words…just for fun.
Now it’s time for another walk with Lupin.
I am reminded of a little snippet from Dostoyevsky’s The Brother Karamazov, which I think I got through in my early twenties. A leading character, one of the brothers, says one day:
“Gentlemen, I have had a good dream.”
Today is a good day for me. It’s sumptuously sunny, and gloriously grand.
At home, for three months probably, no face to face meetings, no hugs and pecks…
Nothing to prepare for, write a speech for.
No train journeys North, South, East or West.
No hotels. (Hmm. Probably good)
No DEEP friends, or foster sisters.
Probably one or two of us succumbing and moving on…
Oh don’t be daft!
There’s Zoom, and the phone, blogs to write, and tweets to tweet.
And for me, there’s my garden to mow and grow, dig for victory, sow for supper.
Lupin – to walk, and rub and cuddle and fuss.
And shout at to stop b****y barking.
My wife will be working from home most days. Separate and shut away.
I read in the paper that the virus might destroy celeb and wealthy marriages; they won’t be able to spend all their time jetting around, together or alone, and will drive each other mad. (Think that story was founded on sloth, lust and envy.)
What, then, to do?
I’m already feeling bored! I thrive on my dementia mates meetings. I need the affirming fun, talk and thought. The sheer relaxed joy of not having to pretend in any way at all. (And not feeling frightened and fearful of the world and its inhabitants. My fellow men.)
I enjoy the company of women. It’s when I can relax and not assume they are mocking me under their breath. But not men. (Childhood, school…you know.) So the dementia world suits me well, as most meetings are predominantly women (health and care staff).
What are we going to do?
Well, my first idea is to capture all your tips and short cuts and workarounds, via twitter (etc), and put them together in one place. We could between us create a marvellous library for others.
We all learn new things as we find we need new ways of doing things. Remembering, completing, finding, writing, planning, cooking, showering, travelling…
The simplest of tricks may be invaluable to our fellow travellers, and the sooner they find and learn them the better their lives will be.
And think how the OTs and Dementia Navigators and Memory Service staff could use them to pass on.
Lots of these things you only understand if you live with IT.
The BIG D
So shall we do it?
If you know where tricks and tips and workarounds are published, like websites and blogs, let me know.
If you have any let me know. Of course you do, but you may have forgotten how useful the tiny adaptations have become.
We’ve got three months till The V peaks. So we are going to be on our own for ages. Or until we just can’t be bothered and we simply walk out and greet and hug each other again.
‘Cos the chances are, most of us will get it in the next two years. Then it will be ok because we will all be immune? Or we will have to use annual vaccine for mutated forms returning. We already do this for flu.
So for now, let’s achieve something.
A book of thingies and what d’you call its.
Tweet me. Email me. Blog me. And I will gather and sift and organise and catalogue them.
Well, not sure about the catalogue…sounds a step too far.
Here are my first ones…
Use Alexa for meds reminders, or to take food out of the oven.
Keep one hand or elbow touching a wall or panel when you have a shower and close your eyes.
Use a calendar on your phone and/or tablet for everything you need to remember, with auto set reminders.
Before you do everyday little things, like pouring tea or milk, take a couple of seconds to look again and make sure you are doing it right, not pouring a packet of loose tea into the teapot! (As I often do). Make it a habit.
Today I have been to a DEEP meeting – Mates in the Hills – in Church Stretton. A small group this month, but, as ever, perfectly formed. We had tea and coffee and a biscuit. And – even now – a few hugs. (Last for a while perhaps.)
We had two visitors. First a local woman who is leading the engagement for developing of a new local 15 year plan. She is visiting support groups for people affected by long term conditions.
So she asked…
How is it, living in Church Stretton, with dementia, or as carer?
What local services had we used?
What would be find useful in the future?
Naturally, as I don’t live there, I had to keep a little quiet. Not easy. But a few prompts came im handy!
It seems that the only respite care locally for people affected by dementia is either a volunteer to come and sit at home, or perhaps a short walk, or a day care type place.
Church Stretton is an amazing place, with a thriving volunteer and community centre and organisation, Mayfair and the CoCo (compassionate community). They do fab stuff with lots of people and the community generally is great at looking after each other. (It’s also probably the dementia epicentre of Shropshire, since loads of people retire there.)
One carer said that her husband (living with dementia) tended to walk out on his own a lot, but local people and shops always keep an eye on him and let her know where he is.
What a great place!
But it seems that they have not come up with this great idea…
Volunteers to accompany people with dementia to do what they enjoy, like…fishing, long hill walks, a drive out through the hills or to the sea, a picnic somewhere. This, the carer said, would be the saving of Bill (name changed), who used to be a long distance driver and now is stuck at home. And of course a good period of respite for the carer. And when Bill would come home he would be happy again. You know the scenario and evidence!
They have a Good Neighbours organisation whose volunteers drive people to hospitals etc, and stay and bring them back, which is great as travel to the hospital is long and difficult. So that is good.
There is a newish Care and Share activity and support group run by Shropshire Community Council (lottery funded), for couples living with dementia. Four hour sessions, including lunch. People always kept busy. (No comment)
There is our Deep group…great for sharing knowledge, ideas and experiences, but without any organised activities, unless members want to do so of course. And described as a wonderful opportunity to just relax and chat with people who get it.
I asked Bill if he enjoyed gardening…yes…big smile. So…I said a dementia allotment would be fantastic, and Stretton would be a great place to do it. Universal agreement, and a distinct possibility.
Visitor went away with a couple of fantastic ideas. Which we could all do with, everywhere!
Next Christine from ‘Energise’ (an active exercise organisation funded by Shropshire public health’ visited for feedback. She runs exercise groups to keep older people supple and to address balance issues.
“How could she and her colleagues could make these exercise groups dementia friendly? And get more plwds to attend?”
These are held in any available space that they think is suitable but…
Well, the usual environment stuff:
Have windows for orientation and to avoid feeling shut in…
Have good light but not bright or dazzling
Good signage to, out of, and away from the toilet
No echoes or reverberation noise
Walls and doors with contrasting decoration
Toilet seats in contrast
Orientation clock and name of location clearly visible in hall or activity area.
And we discussed the issue of balance and dementia, and tips that people could be given, such as…
A movement activated night light in bedroom and toilet
Installing stairs handrail before you fall!
How to slowly and carefully get out of a chair.
Keeping an elbow or hand touching a surface in the shower…
Three of the group had recently recovered from breaking limbs in falls. For example, tripping over a curb, and just, simply, falling over at home. They said they had lost confidence…and the Energise class could help them get back to normal. You can self refer to these, but few of us have ever been informed they exist.
So, I asked, had they been given falls advice and referred into the falls service, which operates within and out of the local acute hospital (yea that one again)?
No. (Of course.) No.
What the hell is the point of that service then?
(I was told by someone else some months ago, that the falls service do not engage with people with dementia because they cannot remember advice they are given.)
And then, then, we did the Admiral Nurse surveys.
We don’t have Admiral Nurses in Shropshire, though they are next door in Telford.
We want them. We need them. We continue to lobby for them.
To all DEEP groups around the country…
You will have received copies of the survey, with an envelope containing leaflets about Admiral Nurses, and instructions for how to do the Survey. It might take 20 minutes.
Since these have gone out a little later than planned, we are extending the time for the surveys to be completed and returned to the end of April. I know many groups have things planned in advance, and a week or two is short notice.
So good luck with your surveys…
And the Admiral Nurse Dementia Helpline…available for anyone anywhere in the UK to call.
This is the text of a talk I was giving to a conference next week. I have filmed it instead.
Could you let me know what if anything you know about Human Rights and how it might be relevant to your daily life
Human rights are rights inherent to all human beings, regardless of race, sex, nationality, ethnicity, language, religion, or any other status. Human rights include the right to life and liberty, freedom from slavery and torture, freedom of opinion and expression, the right to work and education, and many more. Everyone is entitled to these rights, without discrimination.
The Equality Act 2010 gives rights to people who have any of nine protected characteristics, to be free from discrimination resulting from their protected characteristic. So people living with dementia, who have a long term disability, have a right not to be discriminated against in how health and social care are provided, either as a whole group or in smaller subgroups (based on geography).
So the simple way of looking at human rights in health and social care is to use the Equality Act framework.
What is their relevance to me?
I believe I have a right to receive appropriate support and care to meet my needs, so that I am able to enjoy my entitlements under human rights and equality laws.
These include freedom from discrimination, the right to family life, and freedom to choose how I live my life. They include therefore those aspects of support and care that I do or will require as a result of ill health.
I believe these rights are fundamental to how health and care should be provided in our country. There should not be a patchwork of support for people affected by dementia, the postcode lottery. There should be equity across the country.
These rights are not optional. There is absolutely no acceptable reason for not enforcing and practising them for everyone. And that includes lack of resources. Resource allocation is a matter of choice, and the choices as to how funds are allocated must not impinge on our human rights.
What do you feel might be the reason for (or be behind) some of the difficulties you face in your everyday lives?
I am still at quite an early stage in my dementia journey, and can do pretty much whatever I choose. Fatigue is a problem, but the other symptoms like memory loss, word finding, doing silly things, hearing loss, difficulty decoding speech, hyperacusis, reduced judgement (eg in financial decisions)..these are not really debilitating or unsafe, just irritating.
So any difficulties I have are not due to at this stage to any lack of my rights being observed.
However, I do not have a meaningful care plan to which I have contributed, or a named health or care professional to support me with living well. And these are the direct result of inequity in service provision across the country, and the lack of any meaningful support where I live.
How much control do you have in overcoming some of the challenges or difficulties you face in your everyday life?
I have pretty much full control over my life. The exception is that I have handed over all finances and decisions to my wife, and I have a small allowance each month. We have ensured that I cannot overspend…because I have done so in recent years.
Away from home, there are situations where I and others, we, are indirectly discriminated against. The Equality Act requires that organisations make reasonable adjustments to ensure people with protected characteristics are free from discrimination.
So for example, in meetings with health and care staff, they often speak too fast, not loudly enough , use jargon, don’t allow us to speak when we need to – so we often forget what we wanted to say.
So I and many others are closed out of discussions about health and care.
Equally, organisations almost always invite the same one or two people to their meetings, because it is easy and quick. They therefore exclude 99.9% of plwds from engagement in service planning and evaluation, AND they don’t get a balance of views.
This is indirect discrimination.
If some things are out of your control, where do you think the power and control lie? Or WHO has it?
When I was diagnosed the dementia nurse told me to avoid taking risks, and to not get tired. She was attempting to control my life. But I refuse to follow this advice.
Of course I get tired. Of course I take risks. We all do. Life would be very dull, and probably impossible, if we did not do so.
My wife has some power or control over me, as I said earlier, regarding money, but I have willingly given her that because I do not trust myself.
I have also signed a lasting power of attorney for when I lose capacity to make decisions.
I don’t feel I am in control of my health and certainly I have not seen any care plan that my GP may have on his computer system. I have not seen it, nor had a review of it. In six years. I am living independent of the health and care systems, except when I need to see a doctor about something other than dementia.
Outside my home, power and control are totally with providers and commissioners of our services. They prevent us asking questions at their meetings in public. They won’t meet us to learn about our needs and their services. And there is nothing we can do. Believe me, I have tried for years. If they don’t want to engage with us there is just nothing we can do. Other than direct action and protest!
What practical things have worked for you or helped you in getting a voice, in being more in control, in being heard?.
I have made deliberate efforts and decisions to be involved in the DEEP network, and am leading a project to set up a dozen deep groups in Shropshire.
I am involved in co-chairing two groups, one local one national, that work to improve services for plwds.
I have continued after diagnosis to work to influence health care and social support for people affected by dementia, nationally and locally. I have taken almost every opportunity that has come along. I have blogged for five years. And tweeted. Spoken at conferences, and on the radio. And just put myself out there.
I have never wanted to shrink away and hide. And I work to help others avoid hiding too.
I write blogs about living with dementia, and about what should be changed to improve services, and to make communities easier for plwds to live well.
I have also started using the Echo Alexa system for reminders and prompts. Really useful for things like taking pills, or not missing appointments.
And of course my trusty ipad. Everything in my life is on it, in the calendar, with notes from meetings so I can remind myself of things. Photographs of people and places, as reminders if I cannot find the memory. Including photos of where I park my car, so I can find it again. I could not have an existence outside my home without it. And inside for that matter!
What does a good service look like to you?
Well, it depends…of course…on circumstances and services…but…
First, the provider staff sit down with you, get to know you, and listen to what matters to you, before designing the service.
Second, they design a service to meet your stated needs, provided in ways that are enabling rather than disabling.
Third, they do not design it for the convenience of their service or organisation, but for the service user.
Fourth, all staff in contact with plwds (could be a bus driver, or physio, or doctor, or shop keeper, or social worker) are appropriately trained to understand dementia, our behaviours, our symptoms, and our needs, and how to work with us.
Finally, that the services are provided in dementia friendly environments.
Based on your experience, what advice or message would you give to someone who is newly diagnosed?
You may have been expecting your diagnosis, or it may be a complete surprise and shock. It often is for many people.
You are not alone. People newly diagnosed feel all sorts of emotions, and often feel very down for a while. That is quite normal.
But remember…you are the same person you were the day before your diagnosis. Nothing has changed other than being given a label for symptoms you have been experiencing. And many people find it helpful to understand why they were having those symptoms.
After diagnosis, people may feel lost and alone, frightened of their future, and reluctant to talk about it to anyone. They may suddenly lose self-confidence.
But it is really important to carry on with life. To do what gives you pleasure, to meet your friends, and just to live as you wish. You are still you. No one has flicked a switch and turned you off!
Go on living just the same as before.
Having a diagnosis has advantages.
It gives you access to support from a number of organisations, like Alzheimer’s Society, Age UK, and your Memory Service. Your family or friend carers can contact Carers support organisations for information too, or attend useful courses fir understanding dementia and caring.
There are also smaller groups that you can go to as well, like DEEP groups.
You can find lots of information about dementia on the internet, and the Alzheimer’s Society is probably the best place to start. They have lots of helpful information leaflets online.
Your life has not ended. You are the same person as before.
Dementia is the name for a physical disease in your brain. It is not mental illness.
There is nothing to be ashamed of.
• Keep active
• Keep engaged
• Keep as fit as you can
Try to go to one or two support groups. They are all different, and one will suit you.
Some offer activities, some are just chat over a drink and cake.
If you don’t feel comfortable at one, try another.
It really does help when you talk to others who have the disease.
Another advantage of a diagnosis is that if you are in receipt of a benefit, such as Attendance Allowance, you will also be entitled to a reduction of half your council tax payment. You will need to claim this. (See the Shropshire Council website.)
You are not alone. Many people understand the disease, and the more we talk about it the less we will fear it.
The time is coming I think, when we must choose to stop our gatherings for a while.
Coronavirus is here, and spreading. It may spread wide; it may be contained in a few areas.
But it is here, and evidence seems to suggest it will spread.
We, unfortunately, are among those most likely to die if we are infected. Many of us have several long term conditions, including heart disease, diabetes or COPD.
And we love hugs and holds.
We do it at every opportunity. Hold a hand, have a hug, an arm around a shoulder…
It will have to stop for a few months.
Can we really go on meeting around the country?
I’m going to London on Wednesday. So I will be on four trains, and several stops on the underground. I will be close to, or touching, probably a hundred people, and if the underground is as busy as usual, in very close proximity. Not hugging, just squashing. Hands on the rail.
And I will be meeting and sitting at the table with around 20 people from around the UK.
So…is this sensible?
What better way to spread the virus around the country?
Indeed, I have only just realised that while I may believe I am invincible, or that I don’t really mind if I die from the virus (after all, I already have terminal disease)… I could bring it back to my family, my friends, my towns people…
So, what to do?
One voice says: until government or NHS says don’t travel, cancel events and meetings…just keep calm, wash your hands and carry on.
Another voice warns: if everyone keeps on as usual we will certainly spread coronavirus across the UK. If we stop we might not.
And then there is this issue of being vulnerable. I don’t mind for myself while the risk of infection is low, but I do mind for others. DEEP gatherings, conferences, working groups…we will really be asking for trouble if we carry on regardless.
So I put it out there. Should we be cancelling our various activities and meetings for a few months?
This thing has hardly got started yet. We have no immunity. It will spread. And while few in total will die, a lot of us older, diseased ones could.
On several levels, then, I think it would be wise to stop activities as soon as UK infections approach a few hundred. And that might be quite soon.
I love going off to these meetings. It lightens my load, my life. It breaks what could become a lonesome monotony, however lovely my garden and dog and family.
But sense must prevail.
There will be costs. Cancellations. Wasted tickets.
And there will be savings. Not running these events! Save them for next year.
Anyway, how can you account for costs and savings at this superficial level, compared with costs of a shut down economy and lost lives?
I think I am inviting organisations to cancel events.
I think we should see the big world picture, not just our self contained lives. (Which are not in fact self contained at all of course.)
I think it is time for a pause.
By the way, I do remember the Corona lorry delivering fizzy orange in big, dot patterned bottles, up our road. Around 1958? Fabulous.