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Dear Self

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So I have heard you have been diagnosed with dementia. I don’t know whether this is recent or you have been living with it for some time. I guess it’s likely you started to notice changes some time ago but either way, I think you will be looking ahead and worrying. You have always been a worrier. I want to say to you that if you have been recently diagnosed, I can imagine it’s scary and frightening. You will think of all those people you’ve met who struggle with their lives and the sadness and stress of their families in trying to cope with the changes and support they have to offer. BUT….also those people kept going and enjoyed things in their lives…

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Whilst of course you must feel frightened and anxious about what the future holds I’d say KEEP BUSY KEEP ACTIVE! Mentally and physically if you can! You know, really know, the value of doing things in life that you enjoy, that stimulate your mind. You have always known this and having dementia does not change that. You have always enjoyed exercise, yoga, running – you won’t manage a run now but WALK WALK WALK, if you can, enjoy those trees, birds and rivers.  Do chair exercises. If you struggle to get out to those places now, try to find a way – join a group, ask for help, if you are in a wheelchair find someone to push you! If can only be around the local park or streets near where you live, remember there is beauty and interest to be found everywhere  - urban or rural. Watch the world and enjoy it.

 

If you can, keep reading – if long books are too much, read poetry and magazines, listen to podcasts and audiobooks. Maybe re visit some of your childhood favourite writers! Stay in touch with friends. I dearly hope some of our dear friends are still with us, but I am sure some will be gone. But those that are there, talk – on the phone or by zoom if needed. You’ve always been a people person and that needn’t change.  You will get frustrated and worried. Things will go wrong and you will forget things and get in a muddle. But forgive yourself. And then carry on. You have been very lucky to be loved and to love. If these memories start to fade then, well, you will have to try to accept being in the present, all that yoga over the years ….you may need to return to that, one moment at a time. Find activities you like to do, alone or with others, keep those grey cells ticking over! You will never be much good at crosswords like Mum, or chess, like Matt and the boys, but hey, jigsaws? You loved doing them in Lockdown back in 2020 and you can do them with other people too. And you can find ‘simpler’ ones that will still be challenge to you if you feel your brain is foggy.

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Then, on the practical side – and you are quite good at this, try not to shy away from the difficult stuff – talk to the kids. You already have a will written but make a living will and power of attorney for both health and finances. Talk to your doctor about a future care plan and what kind of care you’d like at the end of your life. This will help the kids and (name of husband). That is probably one of the most important things you can do for them. If you need help with this ask for help, from the kids maybe but also there are organisations who can help, you know this.  If the kids and others worry about you getting lost or leaving stuff on the stove agree a plan how you can manage such things but still keep as active as possible. There will be amazing apps and trackers and other kit I can’t imagine available by the time you read this. Find a way around things, if you can. Go slowly, give yourself time.

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Thinking about the kids is hard. I don’t want them to have to look after me, especially if they are working and have families of their own.  It’s hard also to imagine them having any patience! If (name of husband) is still with you and able to care for you, I am not sure about that either, I kind of want him to be happy and not burdened by me …but we said for better or worse so maybe we will owe it to each other to stick around, and maybe we will want to care for each other having loved each other. That’s hard to predict. I just hope that you will have open and honest conversations with them all when you are still able to, so that you can think about how you might like to be cared for when it gets that you can’t manage looking after yourself or living alone. It’s hard to think about but get advice about what your options are. Remember how hard you found it when Dad wouldn’t adapt as he got older, despite all his difficulties and ignored all sensible advice about to live at home on his own – listen and consider what people have to say.  But remember too that unbending nature and unpitying self discipline meant he got on with things in his own way and remained independent for far longer than most. So hopefully you will manage a bit of that!

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Remember dementia is cruel and hard, perhaps harder for our family than ourselves, I’m not sure… but it is also part of life, it happens to so many people. So finding a way to live with it, adapt and change in response, as best we can and as we have always done with what life throws at us, muddle through – that’s our best chance.          

 

Love Becky x

 

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Becky Field is a health services and public health researcher and Occupational Therapist, at the University of Sheffield. Her research interests are dementia, aging and improving health and well-being. Becky is currently working on a project about how people value different policy outcomes, health and well-being https://sipher.ac.uk/