Go out and live

“Twitter family… I NEED yr help, friend going for consultant formal #youngonsetdementia diagnosis next week, can’t accept it, family in shock any advice on how to help & also key things you wish you did or asked at that meeting”

I saw this tweet this morning, a plea for help and advice for a person who is about to get their formal diagnosis of young onset dementia. So here are my ideas. Others will have plenty more.

Dementia is not the end of time our life, but it is bereavement. So it is never going to be easy to take the diagnosis. You are losing the future you assumed you would have. But you will also be starting a new life.

B5E739A6-E6B2-4D40-80AE-E85270E4A9A9

Dementia at working age, whether or not you do paid work, affects your ability to carry on in the same ways you are used to. It does NOT, however, mean you can no longer work and get paid for it.

Nor does it mean you suddenly lose all that experience and those skills and knowledge you have built up over your life.

You are the same person after your diagnosis as you were the day before, or the year before. You are not just a person with dementia. You are who you always have been.

You probably have been noticing, and possibly struggling with, the developing symptoms and effects of your brain disease for months or possibly years. You may have been finding your work increasingly stressful and difficult to keep up with.

So the confirmation that there is an underlying cause, ie disease, may be a comfort, as you now know the cause of your difficulties. See it as positive in that respect. Better to know the cause, and then find ways of dealing with it, than to struggle and feel anxious and depressed in now knowing.

No one wants to have dementia, but you are far from alone. You may feel terribly alone just now, but you are not, and you need to talk to others with the disease. 

Take heart and some comfort that you are one of 850,000 in the UK who have the disease.

Ask the Memory Service to give you contact details of others living with young onset dementia, and some time in the coming days and weeks call someone. Talk. Find out how they are getting on.

Ask if you can meet an occupational therapist (OT). They provide support and help you develop solutions to get round difficulties you may be having now, or will have later. OTs are wonderful and will help you you go on living as you choose and want for as long as possible.

Ask your consultant for the name of the person who will provide you with support, and be someone to talk to when you need to.

Remember that the brain disease ghat causes dementia can progress at widely differing speeds. Some people’s disease gets worse very slowly. You may well be one of these.

Dementia affects everyone differently. We have different symptoms, and different parts of the brain are affected, depending on where the disease is. There is no one pattern of effects. Yours will be your own. Don’t look at the stereotypes in pictures and newspapers and assume that will be you soon. 

You have not suddenly, almost overnight, become a person who is unable to think, speak, feed yourself, or take active part in your community. Remember that.

Ask if you have Admiral Nurses in your area. If so, get in touch. Or call their excellent and very helpful Helpline. 

8E2C95DC-BA60-4A4F-B8C9-3C42D59D4102

https://www.dementiauk.org//how-we-help/admiral-nursing-direct/

0800 888 6678

Contact the 3 Nations Dementia Working Group via their website and ask if they can put you in touch with someone you can talk to. They do this.

https://www.3ndementiawg.org/about/

Look on the DEEP website and see if there is a DEEP peer group in your area. DEEP stands for Dementia Empowerment and Engagement Project. 

IMG_2307

These groups are social groups, all run by people with dementia for people with dementia, at all ages and stages, and there are 130 around the UK. Go along. Say hello. Talk to people about how you feel and ask their advice. Just listen if you want. You will find them welcoming and understanding.

https://www.dementiavoices.org.uk

Avoid for the moment Dementia Cafes run by Alzheimers Society and Age UK. These are mostly attended by much older people, further on their journey, and may be off putting or depressing at your stage.

But above all, please don’t sit at home and feel miserable. Go out and do what you usually do. Do what you enjoy doing. And try not to be frightened about telling people. Most will try to understand. Being open about tour disease is often a way of accepting it and getting on with life. Perhaps not ‘as usual’, but living nevertheless.

And do what you enjoy doing. What gives you pleasure. 

Ignore people who tell you not to take risks. Medical and other care professionals will often suddenly treat you as if you have changed overnight into a person whoo cannot do things, and cannot make safe decisions. 

1A797BDC-E8EA-490C-99EE-94D2F67854A9

Ignore them. Go on doing just what you choose to do. You might even want to start doing things you have never done before. Take Wendy Mitchell. She has done zip wires, parachute jumps and walked over burning coals since her diagnosis. 

Read Wendy’s book, ‘Somebody I Used to Know’. She was diagnosed in her late 50s. And read her blogs, “which me am I today?”.

Read my other blogs, and others’. Contact me if you want to talk. 

Go to the Young Dementia UK website and use their resources and ideas.

https://www.youngdementiauk.org/about-young-onset-dementia-0

Are you using social media? Twitter? Facebook? You can find lots and lots of people talk to and share with via twitter. Look at and follow people who are listed as followers in other twitterati profiles.

If you don’t have a tablet or ipad or equivalent, get one. Learn to use it. It will become your companion and your bridge to lots of people, ideas and information.

After diagnosis we often start new lives, meet new friends, and do new things, have more fun, not less. Life can open up with a fresh honesty and openness. You may lose some friends and acquaintances, but if you go out there you will find lots more, who understand you and help you and encourage you.

So good luck to you. Life is just starting again. Life is for living, so go out and live. 

Grounded

I’m sitting in the garden at my son’s house. It’s early morning, and traffic is thundering distantly along roads and lanes, coming and going, people going to work, lorries, tractors, manure.

 

I am staying here for ten days to look after three dogs, including Lupin of course, and the house.

A bit like going to a hotel for a holiday, except I’m on my own. I’ll be carrying on with my usual things. A meeting today. London tomorrow. Local health economy dementia steering group on Thursday.

And entwined around these visits are three dogs and an unfamiliar home. 

For days I have been wondering how I would organise myself. Make sure I had everything here. Get to meetings on time. Exercise the dogs. Go home to check things. Take pills regularly. Not break my diet.

That’s already done…on day one. A kitchen and fridge full of stuff we have got rid of at home. What did I expect?

But the thing I am writing about is the constant grounding I need. 

C267FF3E-3D2E-47FB-954E-9D505CBDCF20

If you have impaired ability to ground yourself, without having to think about it, you have to work at it.

All the orientation signs and marks are missing.

The routine is broken.

The daily milestones and signposts have been removed, and you cannot be sure you are heading in the right direction.

People who don’t rely on routine, and remember where they put things down, and what has to be done before leaving for a meeting…these are the lucky ones who can dislocate and relocate without a thought.

So I have put more reminders than usual in my ipad. I’ve brought my own coffee maker (the wonderful Aeropress) and tea. And I just keep thinking through my day’s events, how I will get there, time to leave, where next…

No more than anyone else would do…but definitely harder work than for many.

It’s tiring never being able to switch off. 

That’s why we who live with dementia find formal meetings tiring and difficult at times. You really have to concentrate to keep track. 

BE9D5BF5-ED1F-4FB9-B5C1-571FA2282DA6

Yesterday I was at a local mental health partnership board. There because dementia is under mental health! 

Yes, I agree, it shouldn’t be. But it is. 

So it was my first time there, and I wanted to just get the lie of the land before opening my mouth.

Introductions around the table…classic…people are ‘cold’ still so they try not to be noticed. Speak quietly and quickly. You cannot possibly work out what they said before the next one starts, let alone lock it in the memory.

Then, the diarrhoea stream of acronyms was just, well, like swimming through shit.

Perfect example of professionals failing to understand the needs of the many ordinary lay people around the table. Many of them with mental ill health and trying to be part of a ‘partnership’.

As a new boy I chose discretion yesterday. Next time…there will be blood…and yellow cards.

“I want to speak”

We were taken through the early years of the five year mental health plan. The key priorities for action, and therefore for new funding.

(Think you know where this is going.)

Suicide…of course.

Younger people, schools, college…of course.

Addiction…of course.

Dementia…NOOOO. Of course NOT.

CB05DC2A-F075-40F7-B6AC-6667D184107E

Hardly got a mention.

So that was my trigger.

Excuse me, but I feel very uncomfortable here. Dementia has not been mentioned in these documents but it is (wrongly) lumped in with mental health. Is it seen as not important? I came because I wanted to influence for improvement in dementia care and support services. Was I wrong to attend?

Nodding heads, when I mentioned dementia. Nodding heads that dementia is caused by physical disease not mental ill health.

And I was assured that I should indeed be there, to hold commissioners to account for spending funds targeted at dementia on dementia. Please continue to attend.

So I will…but next time I shall be putting up my hand to stop the acronyms and slow people down, and meet our needs. Because there is no point in working together if we don’t work together.

And if we don’t work together we will get nowhere.

 

Fear, contamination and scrambling

For the first time, the other day, as I drove into my local village after a trip to Shrewsbury (dentist) I felt relieved and at ease.

It was like feeling safe after a threatening or frightening episode. 

I relaxed. Breathed deeply. And felt at home.

And then this morning, walking around Colemere lake and woodland with Lupin, I felt at home again, as if this place that I have known for forty years was mine, my home.

And now, this morning, I am reading a document about the IDEAL research project into the factors involved in loving well with dementia.

The preamble in the study protocol talks about the effects of dementia on well being, life satisfaction, quality of life, and well being. It speaks of loss of confidence, fear of the unfamiliar.

And I wonder, for the first time, whether I am losing that confidence, and beginning to prefer the safety of the known, the comfort of home.

I know I now restrict my driving to avoid long distances, and the days are becoming more frequent when I just don’t like driving more than a few miles. I don’t feel scared, or unable to do it, I just have a reluctance to put in the effort required to concentrate.

And then, if I did not drive how would I get to the dentist in Shrewsbury? Bus? Three miles walk or cycle to catch one! Train? Drive four miles to local station. An all morning journey.

One day that will happen, but not quite yet.

And then yesterday I found myself in a hotel in Coventry (which will remain anonymous), during a two day conference.

I know, you can never be sure from a website, with its professional photos and descriptions, what a place will be like in reality. You book, you hope, you put aside negative memories of others.

067DA6AB-D78F-4BE0-96DB-70BB56C8BA15

But this was something entirely else. A Victorian pile that has gone through iterations as a hospital and then a hotel. Some time ago.

Now it seems to survive on coach loads of touring holiday makers, and probably a few airport customers who need somewhere for a few hours before an early flight.

The faded grandeur, the chipped dirty surfaces, the weary carpets, dented doors, broken basins, dead light switches…

And then the food. Something out of a refrigerated delivery van, ‘cooked’ too long ago, tasteless, mushy, colourless, self service. The vegetarian option sold out before service even started.

Staff could not smile or be polite. We hadn’t booked in advance a time for eating. Tut tut. Tsst.

(We hadn’t been asked to!)

I went to my room. The light switches did not work. The pictures were hung at uneven heights side by side. The sink drain was broken and filthy looking. Everything just horrid.

Walking to breakfast I nearly fell down steps as they had no edge markings, and the floor coverings were mottled, faded, and in places patterned in dazzling shapes. Another guest’s room curtains were different lengths.

This morning I felt horridly unsafe and unsettled. Dirty, contaminated, expecting something bad at any moment. My brain was scrambled. I could not focus on, or gather my thoughts for, the presentation which was first on the schedule.

So I went to a nearby cafe for a good coffee, served in an attractive colourful mug, in clean surroundings, with a smiling barista. And wrote down ideas to speak about.

And I recovered my own smile and balance, and the fog cleared.

I was at the Dementia UK Admiral Nurse Forum. Surrounded by wonderful, smiling, friendly people who change the world for us.

Thank you, Admiral Nurses, for all you do. It’s my great pleasure and honour to work with you.

I hope that when I need your help you will be working where I live, in sunny old Shropshire.

8E2C95DC-BA60-4A4F-B8C9-3C42D59D4102