Married to Alzheimer’s: Hibernation in peace, love and affection

It is so easy, with the neverending cycle of tiredness that comes with caring for someone with dementia, to forget simple gestures, says Steph Booth

Tony can no longer remember the names of the dogs or the cat. He now just calls them ‘dog’ or ‘cat’, or makes encouraging noises when he wants them to come to him. This they have accepted with a good grace.  Photograph: George Skipper
Tony can no longer remember the names of the dogs or the cat. He now just calls them ‘dog’ or ‘cat’, or makes encouraging noises when he wants them to come to him. This they have accepted with a good grace. Photograph: George Skipper

The garden in winter can be a sorry place of desolation and death. At this time of year it is hard to believe that just under the frost-covered soil, waiting patiently for their moment in the sun, the plants are preparing to push to the surface in a burst of spring glory.

I go out to refill the bird feeders and scan the ground for signs of life. Even the dogs, who are usually my constant garden companions, are not keen to dawdle too long outside. The rug in front of the fire holds far greater attraction.

It is the season of waiting, of hibernating. Tony and the dogs snooze in front of the fire; the dogs occasionally twitching in their dreams, Tony snoring and coughing as his lungs and his heart gradually wind down.

At peace

He has reached a point of peace; a space previously known to him only as a theoretical concept. This makes him much easier to live with.

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Actors, on the whole, are not renowned for their serenity. Self-absorption is their stock in trade and certainly in Tony’s case a gloriously, theatrical temper. It certainly could be fascinating to watch, but not entirely pleasant to be on the receiving end. I have, on occasion, moaned to close friends about the difficulties of living with him. It is therefore something of a surprise to realise a part of me quite misses all of that. I am nothing if not contrary.

The rage and frustration have subsided, but there will be no quietly giving up just yet. Like the garden and the dogs, I feel he is merely hibernating, still waiting for the opportunity to spring into life demonstrating flashes of the old Tony. The Tony who lives life on his own terms.

It was my birthday at the beginning of January and to celebrate I organised a joint party with an Irish friend. We had a céili, with an excellent band. It was such a good night with people who never usually dance, up and dosy-doeing with the best of them. The circle dance at the end was a particularly wild affair.

Tony is not fit enough to dance at a céili, but he enjoyed himself chatting to family members and friends we have not seen for a while.

He was well looked after and spoiled. He was happy entertaining people with his stories; thoroughly woken from his state of hibernation.

The best point of the evening for me was when the band played a gentle waltz. Tony took me in his arms and held me tightly as we waltzed slowly around the floor. It was the best birthday present I could possibly have had. I love him so.

It is important to remember that we all need affection. It is so easy, with the neverending cycle of tiredness that comes with caring for someone with dementia, to forget about those simple gestures. I know I am guilty of it.

The hug, a loving touch on the arm, the meeting of eyes in recognition and understanding. It takes but a moment.

Unquestioning affection

I believe pets can also be an excellent source of unquestioning affection. Our two dogs have taught me this. They are also helpful in other ways. Jess, our young Jack Russell, came to find me when Tony locked himself in the bathroom. He was unable to turn the door handle. She was very insistent that I follow her and rescue him. She got to sit on Tony’s knee and read the paper and eat biscuits with him as a reward.

The unfortunate thing is that Tony can no longer remember the names of the dogs or the cat. He now just calls them “dog” or “cat”, or makes encouraging noises when he wants them to come to him. This they have accepted with a good grace.

Where the forgetting of names was not so good was at our recent party when he failed to recognise one of his daughters, let alone recall her name. The potential for family rows can be quite high in these circumstances. Fortunately, I was nimble enough to head this one off and she had no idea that he had no idea who she was. I did not have to put it down to his dementia.

The céili was for my 60th birthday. Family and friends who have reached this age have been a bit down about being “this old”. Again, in my apparent contrariness, I am delighted to have got this far. I think it is wonderful. I am undoubtedly old enough and wise enough to know better, but still young enough to damn the consequences and do it anyway should I choose.

That’s a valuable lesson my husband taught me.

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