The 3 Rs…Risks, Rights and Responsibilities,…oh, and Dementia

Today I am going to bake a cake.

A three layer sponge cake, with a themed pattern running vertically through every slice.

Yes, I watched Bake Off. Of course. And this morning I heard a little of Thought for Today, with Giles Fraser reflecting on risk and driving. (And, of course, God.)

I hear endlessly from government ministers about responsibilities…ours, not theirs. We have responsibility to follow Covid guidance. Not to pass on big V to our families and others. To quarantine after returning to the UK. To isolate if told to.

Then I hear that Tory backbenchers are worked up about our rights to individual freedom are being infringed by the V guidance and, now, legal restrictions.

Care homes are refusing to allow visitors…and now being instructed by HMG.

On the radio a person explains why she broke the quarantine after returning from Majorca, where rules for distancing were supremely well followed. She decided on balance that she was safe to meet a few chosen people, but not her parents.

Where is the tipping point between the right to family life and to individual freedom to live as you choose, including taking risks, and the responsibility not to adversely affect other people?

Who should or can decide someone else’s responsibilities? Does our elected government decide for our individual good or our collective good? Do responsibilities to the collective good of ‘society’ override individual rights? Always?


Well my starting point is: do my actions adversely affect anyone else?

So if I walk around a field, am I adversely affecting the farmer who lives away from the field, out of sight, if I do no harm to the field and crop? (I believe we should have the freedom to roam everywhere, with the responsibility not to harm.)

I can walk along a cliff top path. I can drive my car. I can get up at 2 am.

Yes. But not push someone off the path, run someone over, or play devastatingly loud music. My responsibility is to not harm others.

Ok. Now, what is my government’s responsibility to me?

To use my taxes efficiently for the benefit of everyone.

To make laws wisely which balance rights, risks and responsibilities.

To not harm people, collectively or individually.


Where does that leave us in these difficulties times?

Our government was not elected by a majority of the population.

Our government is spaffing our taxes at private companies that have been proven time and again to be inefficient.

Our government is prioritising the economy over individual safety.


So, dementia, care homes, isolation, risk, freedom…

The NHS exists to provide, in return for our taxes and National Insurance, health care when we need it, ‘free’. Dementia results from disease. Those who develop this disease have a right to health care and support. But…we rarely get it in any meaningful way. Our government is not meeting its responsibility to us.

Care homes provide, literally, homes for people who towards the end of life are unable to live on their own. Residents live at home in these homes. And, note, they pay a lot for their home. Residents are alive and human. They are not dead zombies. They have a right to family life, and to take risks that do not harm others. Yet they are being denied these.

Ah, I hear you say, but visitors might bring in the V and kill others.

Yes. But not if we had the testing with rapid, reliable 24 hour results , that we could have had if our government had not spaffed our taxes at private, inefficient companies. Most of which have never done anything remotely resembling viral testing.

(Blood pressure rising…flour all over the floor)

We could isolate all over 65s? Nice 21st century apartheid, as someone cleverer than me said. Good old ageism.

We could lock students in their flats? Oops, already doing that. Great idea.

We could introduce new restrictions in hundreds of districts, with different rules, so no one understands what they can and cannot do. Yep. Done that.


Our population is completely confused. We are ‘led’ by fools who put their own interests above those who elected them. Who ignore their responsibilities to us. Who believe they are untouchable. And who daily take risks with our lives, while denying us the right to choose our own risks.

Our population has become obsessed with pro or ante Brexit, stoked up into furies by those fools whom we, for some reason, elected. And by the press, largely owned by self interested, wealthy capitalists.

We don’t trust our politicians to act virtuously, to tell truth, or to act with responsibility and respect our rights.

And we feel, and actually are, powerless to anything about it.

No wonder people are disobeying laws and rules, angry, bewildered, lost in abject powerlessness over their own lives.

People need leadership they respect and are therefore happy to give power and control to.

We are led by fools, and we are not happy.

My cake is a mess. There is no theme running through it. No nicely crafted layers.

And we are on our own in this sea of miserable mess.

Get inside my head please!

Interesting zoom discussion yesterday about activities for people living with dementia. Memory cafes. Care homes. Deep groups. Any groups.

Why is it that people without dementia think that people with dementia have to have activities planned and provided for them?


So, the good reasons might include…

Brain stimulation is good. Helps to retain skills and thinking processes.

Games are fun, and fun is good.

They will enjoy doing these things, won’t they!

Again, hmm.

Less good reasons are…

We think that we know best, what is good for you.

We can’t ask you what you want to do, because you cannot think or communicate.

We are professionals who know best.

We are paid to provide activities, so we provide them.

There is obviously nothing going on inside your head, so we will provide something for you to think about.

We can’t stand not doing anything to justify our existence and just sitting there.


Good intentions all round, of course, and I am not writing this to bash people over the head.

I am writing this to tell you, We Are Still Here!


Take the classic stereotype of people living with dementia. They sit and stare. They cannot feed themselves. They cannot speak. They cannot recognise anyone. They suffer unspeakably.

You and I both know that this is a complete lie, concocted and promoted by media and reporters who are too lazy and uninformed to find out the truth. By uninformed fear and prejudice.

Yes, we may well suffer, from time to time, as dementia is slow death, a journey from healthy brain to diseased brain to death. As is all human and animal life. We will have bad days, aches, pains, upset, despair, illness, trauma, loss…just as you will. This is normal. This is LIFE.

Yes, we may gradually lose the brain connections that enable us to use our hands in a coordinated way to lift food to our mouths and swallow it.

Yes, we may lose the brain connections to find words and memories.

But all my experience tells me that people with dementia actually know the words, they just cannot quite say them. People say, I know the word but I can’t just say it. And this means they are still thinking that word, and the meaning of that word. It does not mean they cannot think.

This is really important.

We often believe, emotionally at least, that silence is difficult, or embarrassing. If we are in company we should talk. And if we are not engaged in conversation we are somehow not present.

But plenty of people will tell you that they get immense pleasure from just being with someone, without any words being spoken. Because they have emotionally pleasing thoughts, or unspoken words, related to the person they are with.

This must be one reason why people in care homes with advanced dementia get great benefit from visits, even though they may not express any understanding or recognition at the time. Their mood and sleep improve afterwards, unless the visitor was an unwelcome one!

When I wake up in the morning I don’t immediately start to talk. What is in my head? Dreams. Thoughts. Feelings. Physical stimuli from the bed clothes, or an aching hip, or a wonderful brightness after a good sleep or a good dream.

The fact that I don’t tell the world what I am thinking the moment my eyes open does not mean that I am not thinking those thoughts.

So why assume that a person with dementia who has lost some power of communication and cannot find words to speak is not still thinking and very much alive inside?

It takes empathy, understanding and patience to know someone.

There may be periods of silence, perhaps long, where just sitting and looking seem to be all that are going on. But you must know that inside that brain opposite or beside you there are thoughts and conversations and journeys and memories, pleasure and pain. You can share these by just sitting and being there.

We do not need word searches, singing songs you choose, picture books.

We do need physical activity, and opportunities to see and smell and feel what has given, and still does, give us pleasure.

Dementia results from brain disease. We may well live with that brain disease for thirty or forty years. The symptoms may not become apparent for twenty years. They will appear, bit by bit, over years usually, and they will be different in every person.

A diagnosis does not change us. It reassures and frightens in equal measure, but it does not speed up or slow down our disease. It does enable treatments for some types of disease which can help enormously. And it enables us to look the disease in the eyes and say, I am still alive; you’re not having me yet.

Wherever we are in our journey with brain disease, we are still who we are. We still enjoy what we enjoy. We want to continue to do what gives us pleasure and what makes getting out of bed worthwhile.

It’s what I want that matters to me. Not what you think I might want or need.

Ask me. Find out about my life. Ask my friends and my family what I enjoy.

Don’t think you can ever know better than me what I enjoy and what I need.

Your job, paid or unpaid, is to help me find opportunities to do what I enjoy.

NOT sit in a circle in a church hall, facing people I don’t know, singing a song I don’t like, or doing a bloody word search.

Unless I actually want to do that. And I don’t.

Dear Friends…be a craftivist!

An open letter to Shropshire DEEPers

Dear friends, as you will know, the government is changing the rules on gatherings. Understandably.

So, as we are bound to be more than six in number, I think we have to be responsible and not gather. I don’t feel happy getting round it by dividing into two groups, as we will inevitably mix and change the groups.

I also, like many others, do not want to put at risk my own health, after seven months of isolation. If any of you want to gather in a tiny group that is up to you. But I cannot organise a larger gathering.

I do urge you all to try to join our Friday Zoom meetings. They provide a chance to just chat and share feelings and what we’ve been up to. I will send out the link as usual tomorrow or Friday morning.

Without wishing to pontificate, it does seem that, as predicted by many, this virus thing will be with us for a long time, and a vaccine will not be available till well into next year. So I believe we just need to hold tight, try to find ways of doing what gives us pleasure, and keep safe.

My greatest concern is for those in care homes, and their families, who cannot have visits. If only quick testing – any testing? – were available it would be completely possible. Sadly, we are not there yet.

I know that a good number of other deep groups across the country have started to meet outside now and then, for walks or picnics…I suspect they will all be having to stop these now.

It’s not necessarily us oldies who will carry the virus to each other, and I don’t entirely blame the young for feeling unable to comply…well, I do blame some that are out and out Flouters…But however it comes to us, we are far more likely to be seriously ill or die. It makes sense to take responsibility.

Looking on the bright side, searching for that silver lining, it is an opportunity to break from our habits And routines and find new ways of living and enjoying living. I certainly have done this, and when I went to the dentist last week felt very happy when I got back to my little domestic bubble at home. I can do almost everything online. Save fuel…I have only filled my little care twice in five months, for my daily dog walk two mile drives.

Winter will be more challenging, at least for me. I love being outside, and dark early evenings and mornings will be hard. But the wheel turns, and after a winter rest I will be out with my seeds and spade again before long. I love the changing seasons that we get in the UK. Watching the changes, leaves growing, turning yellow, and dropping. Collecting them, making compost, then using it next year. Waiting for the spring return of birds. It’s great. Im lucky to live where I do, but most of us can get out if we choose to.

There is growing evidence that being out in the natural world has a hugely beneficial effect on wellbeing and contentment. Even if you have to do it on your own.

I am continuing to learn to carve. My latest project has been to carve sunflowers on split logs or branches that I find on my walks. I’ve done ten now, and will be sending them to a few friends in deep groups around the country later this week. I write this mot to show off but to show that we can all learn a new skill, regardless of age and illness. It’s just a question of finding what you enjoy doing, and what is practical, in your own circumstances.

I nearly wrote sensible! Oh, let’s not be “sensible”!

I am helping to lead a DEEP project Called “Craftivism”. A small (at the moment) group of us are using our crafting skills and pleasure to make or create things that we will share or give to others. It’s a cross between activism and crafting. We do it to show to people that dementia does mot mean we cannot do anything. Dementia does not diminish us. We can still learn and create. We want to break down the myth that a diagnosis leaves us incapable and written off.

The things we are doing include: whittling whistles and carving things, making intricately designed cards, making face masks, creating hanging baskets from bottles, making (wait for it) fairy houses from logs and stones and shells, painting stones, water colour paintings, cooking sour dough bread…

I know each of you has something in you! Either a skill you already have, or something you could learn to do. And you can find hundreds of great guide films on Youtube which will show you how to start and learn to do something. Whatever you think of…there’s a film!

Give it a go. And then we could all be craftivists in Shropshire. I even have labels that we use…as you will see in the latest DEEP news that I sent out earlier this week.

So, friends, keep going in these odd and often difficult times. Don’t forget the Admiral Nurse helpline, if you are getting to your wits end.

0800 888 6678
Open 9-9 weekdays and 9-5 weekends.

Good luck and keep safe.

Imprisoned in lonely, horrid death

I read today that in the UK 25% of those who died from Coronavirus did so living with dementia.

Hmm. I wonder what Alzheimers Disease International (ADI) is trying to achieve in publishing this figure.

Why would we be surprised? Many people living in care homes, over the age of 75, love with dementia. Care homes, as we now know, received patients from hospitals in March and April who had not been tested for CV19. As a result, some care homes saw large numbers of infections and deaths. Others, who refused these discharges, have had no infections.

CV19 has caused higher mortality in people over 65, with underlying health conditions, and with diabetes. Well, guess what! Many of the people in care homes with dementia have underlying health conditions. Multiple conditions.

I can see that it was disastrous and unforgivable to discharge patients without tests. But I do not see that people living with dementia have had a more unreasonable time under CV than others. We have all suffered, young and old alike.

The trouble is, if you live with dementia you need social contact and activity to keep you going, for your wellbeing.

A huge issue now is that care homes are refusing visitors. Perhaps this is because they fear the reputational damage that might result from in home deaths from covid. Perhaps they have massive risk aversion on behalf of their residents. And – no perhaps here – they do not have the test kits to allow residents, staff and visitors to be tested. Despite Matt Hancock’s promises.

But denying visits damages at least two people…the visited and the visitor. I know of the wife of a person with dementia who has been unable to visit her husband since early March. She is both upset and angry. Her husband, whose dementia is quite advanced, depends on daily face to face visits, lots of time to talk, do things, understand, make contact through the fog of dementia.

And there must be many thousands around the country like this.

My worry is that ADI’s published data will make care home managers and owners more reluctant to allow visitors. And families may feel less willing to demand visits, for fear of passing on the disease.

Freely available testing would get round this. So, Mr Hancock, please get this done now.

Secondly, let’s not forget that people die. Of course they die. And care home residents are no less mortal than anyone else. Indeed, by definition, their time on this earth is limited, perhaps short.

We should not, must not, cause those final days, months, years, to be miserable, and indeed hasten death, by pretending that life must be preserved at all costs. Wellbeing is crucial to physical and mental health, no less so for people loving with dementia than anyone else.

So what if a person dies a few weeks or months earlier – than what? – if they are happy, contented, loved…and feel loved.

Ask us, living with dementia. Don’t assume, from your professional, risk averse life without dementia. Ask us.

What do we want? What do our families want?

And don’t, for God’s sake don’t, assume that our diseased brains mean we don’t have capacity to make choices. Some of us will lack capacity, either temporarily or permanently, at some stage. But assume we CAN make decisions. Even if you don’t like our decisions, or think we are taking unnecessary, inadvisable risks.

Our lives are OUR LIVES. We have fundamentally human rights to live happy, fulfilling lives, and family lives too.

You do not have the right to take that away and imprison us in horrid, slow, lonely deaths.