Yo Tozer-Loft is many things: a professional singer and storyteller, a mother, a wife – and a carer. She has cared for her father and her mother-in-law in her own home, journeying with them through years of living with dementia. Here she talks about the impact of caring on her life and friendships, finding support – and making sure you have a giggle.
I’m married to Steve, we have two sons aged 13 and 17, and for many years now, we’ve had one or other of our parents living in our house in Sheffield. First my dad was diagnosed with dementia a couple of years after my mum died. Eventually he wasn’t coping at all on his own and moved in with us – he died two years later. Now my mother-in-law, aged 81, is living with the condition. She and my father-in-law live in our now converted basement. I call it ‘interwoven supported living’.
I was 39 when Dad came to live with us, and my youngest child was three. Sometimes people around you don’t understand what a huge effect it has on how much time and energy you have left over after caring. My situation was unusual in that I was much younger than many people who are caring for a relative with dementia, so I didn’t have peers who were going through the same thing. I found some friends drifted away, I suppose, but several stepped forward and have been a great support.
Well, you learn as you go, don’t you? It’s very important to get time away from the situation and time off so you can nourish yourself and recover. As a family carer, it’s easy to think you should be doing more than is actually good for you. That’s not sustainable because caring can be really draining. Although we have paid carers coming in every day, it still feels 24-hour because it’s in my home and issues are coming into my day all the time. I’m coordinating a lot of other people giving care and that takes considerable time.
Be really aware of carers’ energy levels and what they are actually able to contribute to church life. It may be the time for the church to look after the carer in their community, without any demands on their time.
I don’t want to put people off – caring means you get very precious moments with the person you love. I’m very challenged by people saying that they have ‘lost’ the person with dementia. I strongly disagree with that. Dementia is a disorder of the brain but it’s not a loss of personhood. The person is disabled, or broken or limited, but they’re still themselves until death. Of course, that doesn’t mean it’s not sad to see anyone you love who is suffering or hurt in any way.
Dementia is a condition that is very affected by the environment and community. If we form communities around people, that will facilitate how well they function, as much as is humanly possible, that is optimal.
Singing with your elder is really important because when they can’t speak, singing is a powerful communication tool. It doesn’t matter if you’re a good or terrible singer! When speaking, keeping your voice gentle and being gently repetitive helps, because sometimes after repetition, the words or phrase ring a bell. Also, posing questions in a way that doesn’t put pressure on someone to provide an answer. So saying something like ‘I wonder if … ?’ rather than ‘Do you …?’ And finding anything that will give you both a giggle – having a laugh whenever you can really helps!
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