Remembering the last Christmas Day with my husband who had dementia

Remembering the loss of a loved one at Christmas can make the festive period a very emotional time. In this moving piece, Susan Barlow recounts the what-would-be last Christmas with her husband Ian in his care home in 2019.

'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.

Ian and Susan sat in the garden

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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Susan and Ian Barlow dressed for a country walk

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!”

Susan and Ian Barlow on their wedding day, Susan looking into Ian's eyes and smiling

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.

Susan and Ian holding the camera in front of them to take a picture. Susan is smiling

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.

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19 comments

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Thank you for sharing your very touching story. My mum has mixed dementia and myself and 2 sisters are apprehensive of coping with the future and this terrible disease. Mum is a shadow of her former self, she was strong and coped with everything, cooked Christmas dinner for all of the family for years. Now she is unable to make a cup of tea and doesn’t recognise her own home. She has carers four times a day as well us us visiting constantly but thinks she is always alone. The guilt when we leave her is enormous. She is put to bed constantly saying “why am I alone all of the time when I have three daughters”. We all have families and commitments of our own and it has proved impossible for her to live with us. We have tried but the disruption is unbelievable. She suffered COVID pneumonia in January last year and we feared we would lose her but physically she is so strong and bounced back. She will stay with us over Christmas, she is unable to hold a conversation but sits quietly and I wonder what, if anything is going through her once able mind. At the end of the day she will be convinced she is at home and will ask when we are leaving. We realise this will only get worse and are probably suffering mentally more than mum. My heart goes out to all who is coping with the terrible consequences of this disease and sincerely hope that during my lifetime there will be a breakthrough with the research being carried out. Happy Christmas to you all.

Thank you for sharing your time, I greatly appreciate you doing this
and may help me to come to terms with a similar situation, but am sad
to be unable to share time with my husband on Christmas day.
My husband is in a care home that does not help well in keeping family
members close to each other, but also it hard for me to leave my two adult sons who have disabilities, whist I attend to visiting my husband who is not so close by. I greatly feel pulled between both
but it's where I am and I am thinking that my sons have no one else to take care of them but my husband has, but still does not stop me
so many, many times a day think of and greatly miss him which was all made possible with the help of COV-19.
Please who ever reads this, greatly love those close to you, show in ways that can be taken on board today do not leave unattended
for they so need to be shown, as all is gone so quickly from us.
LOVE MORE.

This was a lovely story and a comfort to know what to expect. My husband is with me and I care for him at home, some days are hard work, I know it will get more stressful. I often think what will I do when it’s time for a care home. I hope I am as brave as you. Thank you for your story.

Thankyou for sharing your story , it really does help to know & understand the loneliness one feels as a loved one suffers from this illness, to also realise there are others out there who are also going though this, that we are not alone ,it does't take away our pain , but it helps us to go on

Like yourself my husband had to go in a care home as he kept falling and it was getting very hard
For me to lift him up he ended up going into the hospital for a while then the home so he wasnt with me for Christmas 2020 and there was no visiting because of covid I got to visit again in the
March after having lateral tests every time I went sadly he past away in April after 50 years of marriage I still find it hard to sleep some nights I feel he's with me take care.

Like yourself my husband had to go in a care home as he kept falling and it was getting very hard
For me to lift him up he ended up going into the hospital for a while then the home so he wasnt with me for Christmas 2020 and there was no visiting because of covid I got to visit again in the
March after having lateral tests every time I went sadly he past away in April after 50 years of marriage I still find it hard to sleep some nights I feel he's with me take care.

A beautiful story of love and loss. My mum went into care in February after we could no longer manage her needs. Her care home is 55 miles away from my home so I visit once a week. At the moment she still knows us but I don’t know how much longer that will be the case. I have chosen to visit on Christmas Eve rather than Christmas Day so that mum can take part in all the activities and sleep when she wants to (she does this a lot) without any interruptions from me but I feel incredibly guilty and sad - this will be the first Christmas Day I haven’t spent with mum in 62 years ….

I read this through my tears, understanding every word.
I'll be with my mum this Christmas, and I think that it'll be our last together.
I hope that if there is a heaven, dementia won't be there.

Hi Christine,

We're very sorry to hear this. Please know that you can always call our Dementia Connect support line on 0333 150 3456 if you want to talk to someone for support. More details about the support line (including Christmas opening hours) are available here: https://www.alzheimers.org.uk/dementia-connect-support-line

We hope this helps.

Alzheimer's Society blog team

Thank you for sharing so eloquently your story - I feel it has helped me -

Thank you for sharing such a personal story with such honesty.

Thank you so much for sharing your story. This year my Wife had to go into care so this will be the first time we will be apart for Christmas in 53 years. The care home has got permission for me to go and have my Christmas Dinner with her, I dont know what to expect, my Wife now has no conversation and sleeps most of the time so how she will respond to me being with her I don't know. The cares at the home are wonderful and tell me that they looking forward to me being with them on Christmas day but I am still very apprehensive about the day, I just hope that I can manage to help make the day special for my Wife and hopefully the carers.

Very emotional to read. Thank you for sharing, Sue. A lot of this is very familiar as my father was in a similar situation to Ian.

Sue was fortunate that the home made her so welcome, things might not be the same now due to covid. When I visit my husband in his home I'm not offered so much as a cup of tea and they don't know my nd!e or who I am!

i worked for 15 yearsas a carer for dementia, i loved my work , finding comfort in singing with most of residents,. i lost my job through ill health but even now i treasure the memories given, to have provided som bit of happiness

Thank you for sharing that x

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