Tony's story: 'We were determined dementia wouldn't drown out the music'

In retirement Tony has enjoyed success as a poet and writer. Since his wife Sheila was diagnosed with Alzheimer’s disease in 2017, his focus has turned to raising awareness of dementia. His poem, ‘Farewell Tour’, celebrates the life-enhancing power of music.

Sheila and I first met at Teacher Training College in 1963. I was in my second year and Sheila was a fresher.

I had left some books on a sofa in the common room and when I returned, in their place was this pretty girl.

As they say, the rest is history. We were married on 9 July 1966 and so this year we celebrated our 53rd wedding anniversary.

Sheila & Tony's wedding 9 July 1966, with Best Man & Bridesmaid admiring ring

Sheila's career

Sheila was the best sort of primary school teacher, noted for her enthusiasm and for her ability to bond with children of all abilities, their parents and her colleagues.

Towards the end of her career, she enjoyed the variety of supply-teaching and was sought after by numerous schools.

Finally, at the age of 65, with great difficulty, I had to persuade her to de-register as a teacher. This was twelve years ago, but I was already becoming a bit worried about her fatigue and occasional memory lapses.

Caring for Sheila

A formal diagnosis of mild cognitive impairment (MCI) was made in 2012. This progressed to one of Alzheimer’s disease five years later in February 2017.

With support from adult social care, family and friends, I managed to care for Sheila in our own home until May of this year when I had to accept that this was no longer possible. I had to place her in a care home.

It is hard for both of us. Sheila will probably not completely settle until she no longer recognises me or remembers her life before the care home.

At present, I visit to take Sheila out for an hour before her 5:00pm supper every day, except on days when I take her to a midweek Church service or to one of her social groups to meet up with old friends.

There is still guilt, but, however reluctantly, I do accept Sheila’s consultant’s reassurance that this is the best and only way forward for both of us.

The standard of care in the home is excellent. I have no worries on that score, and I am gradually returning to the activities and hobbies that had to be put aside as a 24/7 carer.

Music lovers

Music, in whatever form, has always been an important part of our lives.

Glen Campbell was one of our favourite country music singers.  When Glen was diagnosed with Alzheimer’s disease, he was determined not to ‘give up on life’. He was also keen to share his Alzheimer’s journey in order to raise awareness of the condition. He did this, in part, through a series of ‘no-holds-barred’ documentaries.

His example strengthened our own resolve. We were determined that the diagnosis of dementia would not drown out the music. We continued to enjoy attending concerts until the month before Sheila entered the care home.

Fortunately, like many others, Sheila’s care home is alive with spontaneous outbursts of song.

Other memories may be lost, but the music remains.

For Sheila, music is particularly important as a link with our lives ‘Before Care Home’.

Although, now in a fairly permanent state of confusion and with no short-term memory, she is keen not to miss next season’s series of London Philharmonic Orchestra concerts. I have therefore taken the plunge and bought our tickets.

Sheila’s tolerance of any event is now only about one hour. We may have to leave at the interval, but I am sure that the power of music will have worked its magic better than any medication.

Sheila and Tony on their 53rd Wedding Anniversary, 9 July 2019

Farewell Tour

By Tony Ward

Remembering the 2012 Farewell Tour of Glen Campbell, “The Rhinestone Cowboy”(1936 – 2017), in the year after he was diagnosed with Alzheimer’s disease.

Dementia has not robbed us of our youth.
The dome above us is gone,
replaced by a memory of stars,
by the scented warmth of a night in Southern California,
by a forest of waving arms reaching out from a farmer’s field.
Southern nights.

Back home.

We can still dance,
carpet, not grass.
Volume just loud enough to keep awake our dreams – 
but not the neighbours.

Perhaps our youthful moves elude us,
but we dance in young minds,
familiar rhythms coursing through arteries and veins,
feeling the warmth,
scenting the night.

These are no illusions,
these are no ghosts from times past.

More than just memories,
we live them still.

The tour continues.

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I cannot find your poem "The Longest Goodbye" on the website. How do I find it, please? I also write poetry. The title alone seems to say it all. My partner went into care the day the weekend the lock down started. I couldn't even see his room when I had to part with him on the doorstep, entrusting him to people neither he nor I had ever seen before. I didn't see him again until last week. The deterioration was heart wrenching to see.

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Thank you for that Tony
It was inspiring to read. You were married 2 months before us and we too loved Glen Campbell plus all sorts of music. My husband has had vascular dementia mixed with Alzheimer’s since 2007., Just a few months before we retired. He is still at home and I am his carer. He loves nothing more than listening to music of all sorts, from the Rolling Stones to Katherine Jenkins and Andre Ruei. One of his favourite things is watching Sky Arts, where they have some amazing music programmes. Things are getting worse now and it may not be too long before we need to re-assess our situation.
I have only just found this “forum” and I think it will be very helpful.

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We have watched with sadness Sheila's recession into Alzheimer's and Tony's incredible devotion to caring for her.
Alzheimer's is cruel but Tony is an inspiring example of devotion and care.

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Congrats on your prize for Best Poem last year , Tony and on being asked to provide another piece. All the very best wishes from both of us - to both of you. Louise and Rodney.

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Thank you for your email, keep your memories alive, best wishes to you both.

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How wonderful, beautiful and perfect in every way.

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A beautiful poem, Tony. Keep writing and keep dancing. Your love for each other and your shared love of music shine through in the shadow of this destructive disease.

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Your poem has touched my heart. It is an inspiration to the many who have to live with the disease.

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Well done Tony!
Presented with your usual competent, upbeat & sensitive persona.

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