A couple of weeks ago, a report came out claiming those who lived near busy roads had a higher risk of dementia. Both Susan and I live near a very busy road, so our thoughts turned, once again, to dementia – and to how we look after dementia sufferers. Back in November, I wrote a post on dementia after reading an article in The Times (no link as The Times doesn’t allow its material to be shared) in which Alice Thomson discussed the benefits of bringing dementia sufferers back into the home and in which I mentioned my own confusion at finding a care home ‘escapee’ on my street.
I received several replies from readers but one in particular stood out. This reader wrote a heartfelt and compelling case for not bringing dementia sufferers into the family home and I think it’s worth sharing. Our reader (who cares for three young children and two parents with dementia) drew my attention to several things. Firstly, she mentioned an Alzheimer’s Society initiative called Dementia Friends https://www.dementiafriends.org.uk. Anyone can sign up and attend a session or watch an online video. For anyone concerned about friends or family (or themselves!), this is a great place to start.
Our reader also pointed out that while we might like the idea of caring for our parents at home (or being cared for ourselves at home), this isn’t always practical and what dementia sufferers often need is a protected environment. I’ll quote her…“Once dementia takes hold, two of the hardest side-effects to treat, help and manage are sun-downing and night wandering. They come at the very worst time of day – it’s very hard (and expensive) to find help in the evenings and at night. Live-in care can be a great option but the carer’s sleep will be continually disrupted and the weight of responsibility is considerable.
This is why it’s so difficult to care for loved ones at home after a certain point. Carers tend to be older and disrupted nights are very damaging to their well-being and their ability to care for partners or parents. Think young children all over again with no upside whatsoever. It’s torturous to be woken throughout the night, anxious and worried that your loved one has gone roaming or fallen over somewhere.
A specialist care home is often as busy at night as it is in the day. It’s extremely difficult to explain to dementia sufferers, in the middle of the night, that it’s not yet time to get up. Sleeping pills aren’t an option either – the risk of falling while night wandering is very high, putting further pressure on carers, ambulances and hospitals.
Having dementia sufferers together can be rewarding (day centres are a great resource for both sufferers and carers), they can chat to each other and interact in a way that’s impossible in the ‘real world’. They have warmth, food and distraction, music and activities. People who are normally reserved will often hug and give each other reassurance many times a day. Some who’ve never liked dancing will dance or conduct to music. I’ve met many wonderful carers who treat residents with utmost respect, talk to them about their past lives and help them through the confusion whilst making sure they’re not embarrassed if they need a pad changing.
Out there in the real world everyone asks too many questions, life is fast and unpredictable, people talk too quickly. This puts huge demands on the sufferer who becomes frustrated (with themselves mostly) and anxious. But being able to provide a calm home with good care in the sufferer’s own home is a very tall ask of anyone. Being a carer can be a very lonely existence.
Although many dementia patients might benefit from mixing with children for small periods of time, young children often make dementia patients very anxious. Small bursts are good but the noise and ongoing frenetic activity can easily fuel agitation and confusion.”
Our reader recommended two reads for anyone wanting to understand a sufferer’s world. Although I haven’t yet read the book she recommends (Contented Dementia by Oliver James), I did read the article she suggested and found it hugely insightful and moving. I’d recommend this, without hesitation, to everyone
https://www.theguardian.com/society/2015/oct/20/the-deviousness-of-dementia by Dasha Kiper.
Do share your experiences of caring with dementia sufferers with us. We’d love to hear from you.
One thing we know is that caring for others is hugely time-consuming and often emotionally exhausting. As you’re caring, you need to look after yourself. Looking after the car is part of the journey, as my acupuncturist said to me yesterday. For me, that means wholesome food that can be made in minimal time, with minimal effort and minimal ingredients. In winter, that means soup! This is a store-cupboard recipe that the whole family eats. My kids dollop pesto into it (from a jar) and then smother it in grated cheese, while Husband and I stir in a teaspoon of harissa (also from a jar). It takes ten minutes of preparation and contains lycopene-rich tomatoes and fibre-rich butter beans (known as lima beans if you’re American).
TOMATO AND BUTTER BEAN SOUP (serves 6)
- 1 tbsp olive oil
- 2 onions (or leeks)
- 2 celery sticks (optional)
- 2 cloves garlic (or as much as you like)
- 2 heaped tblsp tomato puree
- 2 tins chopped tomatoes
- 1 tin butter beans (use any white beans you have)
Saute the onions, garlic and celery, if you’re using, in the olive oil. After five minutes, add the remaining ingredients a teaspoon of rock salt and a glass of water. Leave to simmer for 20 minutes. Blend ‘til smooth. Serve with a dollop of pesto or harissa and, for the children, plenty of grated cheese and croutons.
Annabel
Thank you for sharing Dasha Kiper’s writing (The Guardian, 2015) about dementia. Brilliant writing and much appreciated; only too, too painfully true and familiar to me…my grandmother, my mother, my sister, and now her daughter, my niece in her early 50s. You ask for comments from readers who are caring, or have cared for, Alzheimers victims. In the face of such terrible tragedy (an Alzheimers diagnosis) there is truly nothing that can be said, or done. A degenerative brain disease such as dementia is a death sentence unlike any other. There is no help for it, nor treatment, nor respite from it, just pure pain, unending heart ache. That is on the caretaker’s part as well as the victim. There are no vegetables or fruit to change its course, no cross word puzzles to sharpen the brain, no exercise routine – nothing! My best to you. J
A beautiful piece of writing. I want to believe so much in a cure for this awful illness.
Thanks, Hugo. Me too!
I do love soup on a colder day and brilliant that it helps fight diseases too!
That’s what we think too Fern – thanks so much!