Married to Alzheimer’s: What keeps us together?

If I pick up Tony early from the day centre, he does not recognise me. There is no smile of recognition

Steph and Tony: ‘I do try to be a good person, but sometimes I fail miserably.’ Photograph: George Skipper

Steph and Tony: ‘I do try to be a good person, but sometimes I fail miserably.’ Photograph: George Skipper

 

What is love? There are so many answers to that question depending on the circumstances of asking. A person, a job, beautiful objects, wondrous landscapes – they all provoke reactions or emotions we call love.

Sometimes I look at Tony and wonder what keeps us together. Is it duty, loyalty, remembrance of what was? I do not know. It is certainly not the passionate, romantic love we once shared. The tempestuous, high velocity rows and then the equally tough, tender hunger for each other that informed the making up. Where did all that go? Did it really ever happen?

I know all relationships settle down into a level of mundanity and acceptance, but usually one can still hope for, and probably expect, the look across a crowded room of mutual understanding; laughing and weeping together at shared memories; a touch of the hand, or a hug from someone who knows and understands you better than anyone else.

I no longer have that experience with Tony – and yet, and yet we have almost 20 years of a shared life. He remembers none of it. I came into his life too late to be hard wired into his long-term memory. He knows he needs me. Sometimes he even remembers we are married, but what that actually means he no longer knows.

If I pick Tony up early from the day centre rather than wait for him to be brought home by the transport staff, he does not recognise me. He is not expecting me. I am in the wrong place and he does not know who I am. There is no smile of recognition. No pleased-to-see-me look. I want to shout at him to stop being stupid, he knows perfectly well who I am. But then I look into his eyes and they are blank. He is looking around the room for reassurance that I really am who I claim to be.

Bewilderment

It is heartbreaking to see that look of anxiety and bewilderment, but, also selfishly, I want to know if I’m really so forgettable? In the end, a rational understanding of dementia can help only so far. We all have that basic human need to be loved and acknowledged by our partner. The space I currently occupy can be very lonely.

I do try to be a good person, but sometimes I fail miserably. So many factors impact on my physical and emotional sense of wellbeing. That old, bogey man tiredness haunts my steps. My nights are disturbed by Tony’s agitation or fear. I have learned that the solution is to hold him so we both can quickly go back to sleep.

We recently spent a weekend away in north Yorkshire and after a long walk down a wind-blasted beach I slept solidly for over nine hours. When I told a friend of the relief this brought me, her first comment was to ask what happened to Tony while I slept so deeply. I honestly did not know the answer to that question. What I do know is he was still alive when I woke up and that was all that mattered.

If I had known what was coming down our shared path, would I still have gone with Tony? When I am yelling mean, even cruel, things at him because, in that moment, I cannot, will not, take another moment of the stress and frustration, the answer is a definite no. But we are still together, in our little house, with our dogs, our familiar things and I have my memories and Tony has his. So, the answer is mostly, yes. I love this man much more than I hate his illness.

Untitled by Carol Dix

I look into your face

Your eyes stare into space

I try to search deep into your soul

To find the man I once knew

But he is not there.

The emptiness goes beyond compare

Where are you . . ? I ask.

Where have you gone . . ?

Speak to me . . .

I love you still

I want you back

I need you here

But the empty face is still there.

Tony and I are getting to this point, but not quite yet. He still has moments when to the unknowing he appears well. A bit forgetful, a bit repetitive maybe, but still able to entertain with his stories. And we have this spring to look forward to – something that, after his brush with death last year, I could only hope would happen. I have bullied, cajoled, nagged, loved and supported my poor man to still be with us. On that note, I wish you all a peaceful new year.

Steph Booth is married to the actor, Tony Booth.

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