On the lead up to the release of the paperback version of One Last Thing – how to live with the end in mind, on February 29th…each Friday, I’m publishing an extract from ‘What I wish people knew about dementia’, courtesy of my partner in writing Anna Wharton, who has helped me out here 👭. Todays is from the Relationships section and focuses on me living alone..
On Living Alone
It is estimated that 50 million people live with dementia worldwide, and that is likely to increase to 152 million by 2050. In Canada, France, Germany, the UK and Sweden, more than a third to half of those living with dementia live alone, and generally, older women are the fastest-rising demographic of single-household populations in the world. Which means people like me. It makes sense to me that women of my generation, no longer restricted by the stigma of divorce, are choosing to live alone. But what does that mean when combined with an increasing number of us living with dementia?
Before dementia, there were times in my life when I wished that I hadn’t felt so alone. I split with my husband in 1988, when my daughters were four and seven. After that, I raised them on my own. There were times in the intervening years before my dementia diagnosis when I wished there had been somebody else after him. There were days when work had been particularly tough and I just wanted someone with whom I could talk through a problem; someone who would put a supportive arm around my shoulders and tell me that everything would be all right. Or when a problem arose with one of the girls, it would have been nice to have been able to turn to someone and say: ‘What do you think?’ Or at weekends when I went out to eat alone and looked across at tables filled with couples deep in conversation. Or at night just to reach out and feel another body next to mine, to hear someone else’s breath in the darkness.
Since my dementia diagnosis I have had those moments too: a back-up brain to jog my memory when I have forgotten an important date or an appointment somewhere would have been nice. Times when all you need is another human being sitting next to you to not feel lonely; that shortcut in language, a smile, a knowing look when words are unnecessary – those nuances of companionship that mean so much. A sense of safety to have someone at your side on days when life is a little frayed around the edges and has lost its sharp focus when you need to get from A to B. Someone with whom you can share something special that has occurred, like those times on my walks when I wish I could say: ‘Did you just see that?’ when a sparrowhawk swoops down and lands just feet in front of me. Someone to laugh with – really laugh. Sometimes, when I see other couples sharing a joke, I feel just like a teenager would, being left out of the crowd. I don’t have someone to switch the cooker off when I forget, or someone who could have opened that Tupperware lid that defeated me the other day, which meant that instead of soup I made do with a sandwich for my tea.
Despite all this, it might surprise people to know that I feel I am better living with dementia alone.
I don’t have someone rushing me or questioning. The one thing I always need more of is time. My brain can’t work quickly, so the worst thing anyone can say to me is: ‘Hurry up.’ Those two tiny words prompt panic, confusion and a sense of failure. But living alone, my time is my own; I can go at my own speed.
I don’t have someone questioning why I can’t remember. That constant reminder of not remembering signals to me nothing but failure. ‘Do you remember?’ … ‘You must remember.’ The constant twist of that knife. Now I don’t answer someone when they say that to me, I just let them carry on. It’s easier that way, otherwise they’ll try and jog my memory with another detail that is just as insignificant to me. I often see couples, one partner adopting that tone of voice that says, ‘I told you that yesterday,’ the other looking lost and crestfallen at having to be told again, scolded like a child.
I don’t have to give excuses for my actions. I can get things wrong and there’s no big drama. I can come downstairs in the morning and find the bowl of food that I warmed the night before still in the microwave. I simply scrape it into the bin and wash the bowl. If someone else were there, they might be concerned that I’d missed a meal, or the waste, or the mess. For me it’s just one of those things; better luck next time to remember that it is still in the microwave.
I don’t have someone doing things for me because it’s easier or quicker. No matter how long something takes me, it’s always better to keep trying to do it myself. Dementia strips away so many tiny moments of independence that keep us feeling human, the last thing we want is to lose them all. I see it in couples all the time: the partners who are getting ready to leave and feel frustrated by how long it’s taking their other half to zip their coat. ‘Let me, it’ll be quicker,’ they say. Those five words are so disempowering. At least we have had our brains taken over by a disease; the other party is just allowing themselves to be influenced by impatience. If I get in a pickle trying to zip my coat one day, it’s no big deal, I just go out without it fastened – I’ll soon realise to snuggle it around me when I get cold.
I don’t have someone fussing when I have a bad day. On those foggy days it’s bad enough to have dementia in tow, let alone having someone else asking what’s wrong or how to make it better – even if it is often for the kindest of reasons. If plans have to be changed, I never have to feel guilty for letting someone down. I remember one couple in particular: the wife telling me how they were due to visit friends for a coffee – people who they hadn’t seen for ages, and she was so looking forward to it – but when the fog struck, her husband just wanted to stay at home, somewhere without noise where he wouldn’t have to chat and could sit in peace. His wife’s disappointment was obvious, even as she recounted the story to me, and her husband’s guilt was palpable. ‘She should have gone without me,’ he said. But she wanted to go as a couple.
I enjoy the fact that I don’t have to talk if I don’t want to. Silence is my friend, and my daughters know I love it. I am happy to be in their company and just not talk. At home, I can be silent for hours; no need to engage in conversation for the sake of it. I feel sorry for partners of those not wishing to speak. Having two humans in a house, it’s natural to talk, but how lonely it must be to have someone next to you who feels unable to utter the words because it’s so difficult to find the right ones. I would feel so incredibly guilty for denying someone a conversation.
I don’t have to think whether I’ve upset someone. To think can often be exhausting, and to work out the possibility of having upset someone and why is no different. If I’m with my daughters, I know by their faces or tone of voice if I have upset them. I feel immediately sad and try to put it right in that moment. For couples, that thought from one day to the next of a long-forgotten (at least by one person) argument or unkind word might still linger in one of their hearts. That must be hard to reconcile. Or the resentment that can often be present between couples if one feels they are not understood, or their needs are not being met. It bleeds into every area of the relationship, and yet one person is oblivious. How do you say sorry when you’ve forgotten the reason you hurt someone? How does the partner without dementia forgive, when they may have already done that a thousand times?
I don’t have to worry that I’m doing things differently. What does it matter if I have a cordless vacuum cleaner so I don’t get tangled in the lead? It might not be as powerful, might not do as good a job, but it means I can still clean my house. If I were in a couple, my partner might insist on a proper vacuum cleaner, meaning I could no longer use it and then I would feel totally redundant – although, if I didn’t enjoy hoovering, that might just work in my favour!
I don’t have anyone correcting me when I say the wrong word, date, or name. I’m forever hearing partners correcting their loved ones when a name is wrong. In the grand scheme of things, does it really matter? If you eavesdrop on a group of people with dementia, you will rarely hear corrections. Instead you will witness acceptance: people going with the flow. Putting someone right just leads to faltering, to hesitation while you double-check yourself, and then of course the flow of thoughts is lost.
I don’t feel like I’m letting anyone down. That is my greatest gratitude in being single. We all make plans when we marry: to grow old disgracefully together, to have dreams of retirement, long country walks, wonderful holidays and other adventures. It’s not until something happens to one partner that those dreams lie in tatters. I couldn’t cope with that, with seeing the face of the person who was caring for me, their future stolen away alongside mine. It’s often said that carers suffer and people with dementia live – I suppose we are in the here and now, whereas the partner can think of what might have been. When the disease progresses to the point when we are unrecognisible to the person we are now, we won’t even be aware of the heartache, trauma and suffering caused.
Living alone, I have to find a way around the challenges of my day-to-day life. Is this what keeps my dementia at bay, the very fact that I am single? I couldn’t live alone if I hadn’t faced all my challenges and found ways around them. It’s that determination to stay living alone, to keep finding solutions, that helps me outwit dementia every day.
I have a real problem with people coming into my house now. I find it difficult, as I’m not used to it; it seems strange and alien to me, so I wouldn’t be a prime candidate for accepting home care – it would leave me feeling disorientated to have someone popping in. Many people living on their own have developed their own routines and would find it disconcerting to have to adapt to the ways of a live-in carer. I asked two of my friends recently how they would feel about live-in help. ‘Anxious’ was the word they used: they couldn’t imagine someone being understanding enough to accept them as they were, who would be willing to understand their dementia, and not expect them to accept their way of caring.
An excerpt from the Relationship section of What I Wish People Knew About Dementia
