Dead and alive: the awful paradox of dementia

Rebecca de Saintonge, 18th Apr 2016 3 comments

It’s a journey into oblivion: nursing a loved one through years of illness often means losing yourself along the way. How do you survive?

Dementia – your partner is dying inside their body. The person you loved, still love deeply, is disintegrating in your arms. They are alive, but they are dead. But not quite. Every now and then a vestige of them returns, like the moon reappearing for a moment from behind the clouds, only to be overwhelmed once more by the night.

But you don’t know whether to be pleased, or to howl with grief. This reminder of what you have lost is too painful.

As your partner dies, you die

Long-term illness, whatever its cause, puts a burden on the ‘carer’ (hateful expression) that few outsiders understand. The struggle for personal survival. After years of caring you can lose all sense of self. It’s almost as if you have disappeared.

The truth is, as your partner dies, you die. As their world grows smaller and smaller, your world grows smaller and smaller. Everything you are becomes subsumed into the daily task of seeing to their needs – physical, emotional, spiritual. In the end there is little energy left for anything else. And underlying all of this is a grief you cannot share with the one person with whom you shared so much.

Your relationship dies too. Or rather it changes into something quite different – still committed, still loving, but the price of that love for both of you is no longer laughter, but pain. Where you were connected, you are now disconnected. It is heartbreaking.

A sheet of glass

And in the end, sometimes, the only way to survive the daily grief of seeing your dear one suffer so much, is to try to put a sheet of glass between them and you, so you see their needs, and take care of them, but don’t feel so deeply. To feel that deeply hour by hour, day be day, is to be destroyed. You find yourself acting like a machine: washing, cleaning, cooking, touching, talking, laughing, affecting a buoyancy you don’t have to try to keep their spirits light – all on autopilot.

And so you too, become a paradox. You are a wife, but not quite a wife. You fight to keep your lover alive, and yet have to learn to let them go. You want your love to be endless, but you want to run away and never again be asked to care. You want to die to self, yet you long to live again.

The long and painful journey

When I was first told my husband Jack had Lewy Body Dementia, and that his mind and body would slowly disintegrate, I felt as if I’d been blown up inside, and only my skin was holding me together. But I was determined we would see his illness as a journey we took together. I had no idea what the next few years would demand.

After the publication of my memoir ‘One Yellow Door’ I was surprised by the many letters, emails and phone calls I had from people who had been in a similar situation. Some felt they would never recover, or that no one really understood. Others found their traditional faith simply didn’t make sense in the face of all they had seen of suffering.

A safe place to talk

That’s why I’ve set up this website – as a place where people can  express feelings that it may not have been possible to talk about before, and share them with others who will understand.  A place of mutual support.  Please join in. Use a pseudonym if that feels more comfortable, but do feel free to contribute.

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  • Ros Smith, 18th Apr 2016

    My husband, John, now aged 77, was diagnosed with Alzheimer’s Disease in the spring of 2013, although I had witnessed subtle changes in his behaviour for about a couple of years before this. One thing that I then found annoying was that as soon as people got to know about it, they almost immediately treated him differently. Whereas there was a good degree of camaraderie before, they now seemed to look at him carefully before speaking to him. I could see it in their eyes, a sort of
    guardedness. And I think it wasn’t long before he sensed it too and therefore cut himself away even more.

    If only people could just talk to the person with dementia in the same way as they talk to anyone else, even if the reply they get is not correct, or even weird. It’s so important to preserve the person’s dignity. If John answers something I say with a strange answer, I just pass it off, perhaps with a nod of the head, or saying ‘Oh, is it?’ and letting it go.

    For me, so far, the most difficult thing to deal with has been his gradual lack of communication. Whereas he had been cheerful, always willing to chat to all and sundry, with a ready sense of humour, I soon noticed that he was becoming more and more shut into himself. Once, on a very cold day, I pulled his woolly hat down over his ears saying it would keep them warm. He said “Don’t do that, I shall feel even more shut-in.” From that I got a good picture of how he was feeling. So I think isolation is, for some sufferers with dementia, a very present and debilitating condition.

    And that feeling of isolation begins to permeate any relationship. There are now days when he hardly says a word, just answers with a nod of the head; and these are interspersed with days when, to my surprise and delight, he seems almost normal again. One just has to treasure these moments – I have heard them called the ‘golden moments’.

  • Name withheld, 24th Apr 2016

    My late husband suffered from dementia, though it’s more accurate to say we both suffered from his dementia.

    I felt so painfully his world closing in, his distress at no longer being able to understand what he was reading. He had been an academic who loved to keep up with the latest discoveries.

    As his world started to shrink he still understood enough to know that it was shrinking. Later, as his dementia increased, he was less aware. All he did was sit in an arm chair – this man who had led students on field trips and shared his discoveries … it distresses me still.

    And there was the pretence. I would say, “Well all right, if you don’t feel like going out today, we’ll go out later, tomorrow, next week …..”

    I remember so well having to hide my feelings. Day after day hiding from him my pain at what was happening to us. The loneliness of dementia caring – when there is no longer anyone inside the person beside you, no-one with whom to share the old familiar jokes. And so over the years, the emotional carapace grows:paradoxically, because one loves, one to hide one’s feelings.

    And you have to deal with the expectation of others. I felt the reality of my experiences was denied because of what other people thought I ought to do, ought to think and ought to feel.

    As for God, if I were asked if I believed in God, I’d have to say “I don’t know yet’. I have a lot more thinking to do, but I am determined not to return to those church-goers who are so very certain.

    I’ve just read One Yellow Door and although my situation was different from the authors, there were so many parallels. It has helped me to know others understand, and to come to terms with my husband’s death.

  • Name withheld, 24th Apr 2016

    My situation was very different from Rebecca’s, but there were painful similarities that served to give me great hope. God allows us, and I believe wants us, to be happy. Not at the expense of others, but alongside others, walking together in friendship. When a marriage falls apart, whether through great illness, death or divorce, it is a life stopping, devastating moment. But it is not the end. It is a passing of time, and I believe that if we look carefully, we will find that God has
    given us provision in the people around us to find ourselves again.