Real stories

Remembering the last Christmas Day with my husband who had dementia

'The Meal' by Susan Barlow

“We cannot hold mortality’s strong hand” (King John by William Shakespeare, Act 4:2)

I am putting on my best clothes which includes a silver band to keep my hair in place. The band has a slight sparkle in it which I think will meet with approval. I am feeling numb: just getting on with getting up and getting there. 

I am separated overnight from Ian and I hate sleeping alone. I like to hear him breathing when I lie awake most nights. I hate going into his room in the care home where he now lives.  But, wonderfully, I am going to be with him on Christmas Day!

We are nearing the end of our journey together. Little did we know how near. 

As I make my way to the care home, I am thinking about the last three months that led to him moving into the home. I remember when my headaches were getting worse and the relief when the giddiness subsided for a little while.

When the wheel-chair was getting heavier to push. When Ian’s balance was beginning to go. I was very frightened about how I would cope when he fell. All six foot four of him and weighing fifteen stone. It was a miracle he had not yet fallen. I put it down to his skill on the rugby pitch and how he learnt to hold his huge frame in balance.

Image above: Susan and Ian Barlow in 2010

Arriving at Ian's care home on Christmas day

I take the lift down to the ground floor and out of the side door of my building, to go to the dementia unit on the adjacent building on the first floor.

The unit has been beautifully decorated for Christmas. It is warm and welcoming. It is always lovely to see Ian’s face when I walk into the ward. He is up and dressed and looking good when I arrive, but I wish we were both at home.

I stop myself from feeling sad. This is where he lives now.

No longer able to find the words he wants to say, he reverts to his mantra “Oh, you are so lovely!” We sit together on the sofa and wait to be called to the table.

The other residents

Over the last six weeks I have got to know the other residents who have had to make the unit their home.

There is Clare* who is thin and tense. She usually complains about what she has been given to eat and leaves it all on her plate.

I look across at another resident, Helen*. Her daughter comes to see her frequently, a jolly, teacher who is fun to know. Helen will take up her mantra: “Is anyone there? Please someone come and help me!” over and over again throughout the day after her daughter has gone.

Another resident, Ron*, is easily pleased and is “no trouble”. He is resigned to his lot and reasonably happy with it; at least that is what he shows to the world. Maybe he has had a terrible life and to be warm, well fed and looked after, is heaven to him.

Ron is coming over to greet us. He does so, just like the chief constable he once was. He has been taken from his home in Plymouth to be nearer to relatives because his wife has died.

He still cannot understand why he is here and at times he believes he is in charge of our welfare. When a crisis occurs, he thinks it is his responsibility to deal with it. I watch him as he tries to assess the problem and what to do about it, like the well informed and dutiful constable he once was.

*The names of the real residents have been changed.

Preparing for dinner

I help Ian out of his chair and we walk to the table together. I feel as if I have joined a newly-formed family.

I glance at Ian. He does not look happy. He turns to look at me and repeats his loving mantra, “Oh, you are so lovely!” Now I realise those are the words he is hanging on to as his brain loses more of its capacity every day. His awareness never goes, but he cannot find the words he wants to say. 

We are sitting at the table and I take his hand again. Ellen, the carer, knows just how much to put on Ian’s plate so that he is not overwhelmed by what he sees. Eating has become a problem. He does not want to eat. My heart aches.

He has always enjoyed his food. Now he struggles with it at it. I am not aware of the extent to which his morale has dropped.

Maybe I am choosing to hide it from myself. Maybe he is hiding it from both of us. I will never know.

But Ian’s mood gradually changes. He is enjoying his meal. The roast is not cold, the turkey is not sliced too thinly, the roast potatoes are glazed and brown, and the sprouts are as they should be.

There is bread sauce, cranberry sauce and a glass of red wine. Sometimes, the meals are lukewarm by the time they get to us.

I may have wanted to complain some weeks ago, but I have learned to adapt to our new situation. By coming to the care home every day, I have got to know the carers well and notice that they really do care. 

There is a sudden clattering of plates. I help clear away and then “Jingle Bells” and “Silent Night” are churned out again on the tape recorder as the Christmas pudding is served.

I am not allowing myself to think that this might be our last Christmas together.

I am protecting myself during these dark days from thinking anything at all about the future and hope there are endless days ahead of us.

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Image above: Susan and Ian dressed for a country walk

And I reminisce about the past - the halcyon days at our family home in Cornwall.

On Rough Tor watching the starlings or walking the coastal path. Crushing apples from the trees in the garden with the cider press given to us by friends who were no longer able to use it. Savouring the delicious pure apple juice which we could collect.

Yes, there are many days to remember as we sit silently at the table. 

Reflecting on Ian's dementia

There is no conversation now. Being unable to find the words you want to say must be one of the hardest things, but Ian accepts it, as he has done all changes and chances of this fleeting world. Neither is there any comforting analgesia.

Alzheimer’s disease must have been one of the cruellest afflictions for someone like Ian, whose erudition was phenomenal. To be confined to speechlessness, to the loss of your faculties, dreams and memories one by one; your capacity to control your environment and no longer to have a conversation with anyone, is traumatic.

To be angry, sometimes to the extent of causing grievous bodily harm to a loved one, is hardly surprising after constantly being misunderstood.

But it shows such a measure of the man I married that he never showed any anger or frustration during his long illness, even when becoming totally dependent on another human being who must interpret you to others and may often get you totally wrong. 

No conversation?  But wonderfully I am with my beloved husband.

I do not want to be anywhere else on this day or any day. I am so lucky that my flat is next door to the care home and I can be here, every meal time, not just on Christmas Day, otherwise, I was told Ian would refuse to eat.

Our relationship

My thoughts drift to our courtship. Yes, it was still called that in the sixties!

We would walk, hand in hand through the Somerset countryside. We had found each other quite by surprise, at just the right moment for both of us. For me, the shelter and comfort Ian gave me, after my hopes and dreams had been dashed. For Ian? How can I really know? I can imagine he was experiencing a contradiction of feelings.

“You won’t ever leave me, will you?” I ask.

“Well, I might” He says forcefully.

I think, ‘Oh here I have an honest man! Ah, “here is a man worth loving!”

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Image above: Ian and Susan on their wedding day in 1969

Now, I cut up Ian’s turkey and crisp roast potatoes, and enjoy mine. We are offered a second glass of red wine. We raise our glasses silently, but looking at each other. 

On another occasion, maybe only our second date, Ian suddenly said: “Anyway, you are not at all my type.”

“What is your type?” I ask, fascinated. There is a long pause. 

“Well, you would have masses of raving red hair". Pause.

“You would speak five languages and be ravishingly beautiful” he said.

My honest man is certainly shaping up. Having got the measure of me, I might easily never have seen him again, especially as it was early days.

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Image above: Susan and Ian in the 90's

Cherishing every moment

“Christmas pudding or fresh fruit salad, Sue?”

“Christmas pudding” I say.

I realise that I am happy. I might not have thought so those six weeks ago when on our arrival I found fault with everyone and everything.

We were both in deep distress at what had happened and where we were.

Gradually I have come to realise why the unit was laid out the way it is, serving the situation we were all in. It was modelled on a new unit in another similar residential home which had won an award for its innovative and creative layout.

Instead of criticising the staff, I now realise their value. They have become my friends. I have come to enjoy, with them the occasional uninhibited harmless behaviour of the other residents.

As we are nearing the end of the meal, Harold begins his usual ditty, “In Dublin’s fair citeee, where girls are so pretee...”, sung in perfect tune from beginning to end of all three verses, competing with whatever other music might be playing at the same time.

It happens most mealtimes and this no exception. We are all used to it; sometimes we do not even notice it or might enjoy the interruption.

It is time to leave the table.

We are in a place no-one in either their right or wrong mind would want to be.

Underlying desperation is always lurking. Mealtimes succeed in lifting the heart a little.

I treasure this memory of our last Christmas together. A memory which could have been smirched by discord or misery, but was made good by a dedicated staff, who, taken away from their own families, made it a family time for all of us.

Epilogue

All our family came to visit on Boxing Day and we sat around on the sofas in the living area of the care home. We stayed there drinking tea and eating Christmas cake until darkness fell.

Ian was born on “The glorious 4th of June” in 1935. He was taken swiftly and gently at three minutes to midnight on the night before New Year’s Eve 2019.