In the last weeks I have been busy as usual talking about the lived experience of Dementia to many varied groups. One participant at a faith community presentation stopped me after a while and told me she was so angry she was going to leave the room. Why? Because she found my positiveness unbearable. ‘ I cared for my mother who had Dementia and it was unmitigated hell.’ I am a positive person and though of course I could tell some dreadful stories about my own Dementia, I chose not to because I believe it is possible to live with Dementia. perhaps not well, but with a sense of purpose, meaning and deep fellowship. But what her anger brought home to me yet again was the tremendous burden carried by carers. And as much as we do for those diagnosed with the disease we must give the same to supporting them,
To go to the other extreme I was talking to a group where two ‘ see them once a year friends’ were attending – to my great delight. As I was packing up the husband came up to me and said, ‘my wife was diagnosed with Dementia yesterday, I can’t think of anything we needed more today than to hear you talk about how it can be.’I was so glad that it worked out like that.
But why the road to hell? Because I heard so many stories about the most well meaning actions taken as support with no reference to the person being supported. Houses ‘sorted’ with 15 skips and then surprise that the person being sorted was not happy, and not grateful. If there is infestation or real danger perhaps some sorting could be justified but even then the person needs to consent and be consulted. People with Dementia can be hoarders, and still live safely.
Safeguarding being taken to ridiculous lengths, with no reference to the Dementia statements. Remember ‘ We have the right to take risks’. How badly that was received – with biblical justification – the idea that the statements which are the authentic voice of people living with Dementia can be disregarded because professionals know best.
Complicated, new, loud and basically very professional church music – with complicated movement- offered as appropriate for Dementia Friendly church services. Surely older people as well as people with Dementia prefer what they know. Perhaps I am biased because as a Quaker the silence of meeting feeds my soul, but so does Nicheran Buddhism and the simple Communion Service we have here at Lea Court.
I believe with the greatest of passion that unless the voice of the person living with Dementia is heard and responded to then hurt and pain and sometimes very real harm can ensue.
I travel to and from Euston a lot and need to use the disabled assistance for every journey. The number of wrong trains I got onto before I asked for help is better passed over. We have the right to take risks, and I take the risk of travelling alone, but it would be a risk too far not to take advantage of the help available. Anyway I have come to know the assistance staff very well. Last Saturday when my blue chariot driver came to collect me the counter staff sang ‘ So it’s for you Mrs Robinson.’ Loved it.
But the losses continue. I’ve realised that I have no longer sense of what clothes are appropriate and have been very cold in the last weeks, going out into the biting wind with a short sleeved summer dress on. Realising that look right, look left, look right again doesn’t work any more because I forget whether something was coming or not. So it’s zebra crossings for me in Madeley Village. As I am not ashamed to say, I am incontinent and have managed it well up to now, but now I forget to change my nappy and can get myself into a dreadful state. I am so grateful to the people who know and remind me, and in particular a young man I often work with who has heard me speak about this and without being asked, it’s women I know well I ask generally, he says quite simply in coffee or lunch breaks and before I set off for the station ‘ Do you need the toilet? This is the support I need, not someone who will come and clear my house of books because they know I have difficulty reading now apart from poetry. If any well meaning person did that to me I would come back and haunt them in the most gruesome haunting I could devise.
Paul is very very unwell and we worry about each other a lot. But we are managing still. And then there is my amazing daughter, a busy medical consultant, head of medical education for a large area who uses a precious afternoon off to come and change the bed, do the washing, brings things she thinks I may need and makes everything better just by being here. When I think of the thousands of people totally isolated by their dementia I know how lucky I am.
Feeling a bit overwhelmed by thank you presents at the moment, flowers, chocolates, (Three boxes) High Street shopping vouchers (lots) a wine voucher (Big) and lots of lovely letters and cards. So even though I have been proper poorly and in a lot of pain, not in any way dementia related, life feels good at the moment. Just keep your hands of my books.
Photograph of Shelagh with her niece, Fizzy Hammers blog manager and musician Sophie Cooper.