Peter and Joyce sitting on the sofa a number of years ago

Peter's dementia poem about his wife, Joyce - 'A Changing Life'

Peter has been looking after his wife, Joyce, for over 12 years. She was diagnosed with Alzheimer’s disease at the age of 58. Peter finds comfort in writing poetry, and hopes others will benefit from reading his poem about dementia.

Joyce and I were married in 1974, 46 years ago. She was a trainee teacher and I was still a student. Eventually, I became a teacher as well and we mainly worked in the north of England.

After our daughter was born, Joyce suffered from a lot of gaenocological problems resulting in a hysterectomy and further major operations to clear up problems. This ultimately led to Joyce having to retire on ill-health grounds from teaching in 1999 when she was 49 yrs old.

I was working a one-hour drive away from home. This meant Joyce was on her own from 6am to 6pm on most days as our daughter had married and moved to South Wales.

I noticed she was gradually becoming quieter and morose and was starting to exhibit unusual characteristics like asking the time and date repetitively.

In 2005 I decided to take early retirement in order to be with Joyce and allay her anxieties. Two years later, we moved to Cardiff to be nearer our daughter.

By this time Joyce’s symptoms were getting worse with her putting her clothes on in the wrong order, forgetting where things were, and getting lost if she was on her own when out shopping.

Eventually, I took her to the GP who referred her to the memory clinic in Cardiff where she was diagnosed with Alzheimer’s in 2008 at the age of 58.

Living well with dementia

We knew nothing about it but we were determined to live each day at a time.

Although Joyce’s condition has deteriorated a lot over the last 12 years, she is still with us, still mobile, and still laughs from time to time although communication is difficult.

Information from the Alzheimer’s Society has been invaluable, as has joining the Forget-me-Not Chorus in Cardiff which we stayed with for over seven years before Joyce stopped singing.

Now we have a very orderly life, getting up, washing, having breakfast, walking the dog, having lunch, relaxing until dinner then going to bed at about 8-9pm.

Luckily I’ve managed to get food deliveries throughout the pandemic which has protected us. 

Joyce is doubly incontinent and can’t eat ‘lumpy’ food as she chokes very easily, but most supermarkets have ready meals which are suitable.

She’s also on a range of medications to help her relax and control the Alzheimer’s as much as possible.

I often take Joyce for a drive in the car, when not under lockdown, which she enjoys. We regularly WhatsApp our daughter although we are all missing the physical contact and company which isn’t possible at the present time.

Throughout the whole time since diagnosis, Joyce has been positive and a real credit to herself, making my life a lot easier than it might otherwise have been.

Joyce in 2020
Joyce this year, photographed by Peter

I find that writing poems helps immensely. I wrote the following some years ago and my daughter recently read it and thought it might help others if they did too.

A Changing Life

by Peter Baker

My wife was young, not one of the old timers
When she was diagnosed with Alzheimer’s.
I saw it coming, but it was a stranger
And no-one told me of the danger.
At first she got worried
When I wasn’t home;
She doesn’t like
Being alone.

As time goes by, her memory falters,
Interest fades, reality alters.
I love her so much
I’ll never leave;
Even though
I already grieve.

Day by day our world turns round
Different to yours, I’ll be bound.
Sometimes she’s happy
Sometimes she’s sad;
I’m still with her
Of that I’m glad.

The story’s end may be far or near
When and where will never be clear.
The mind may go
There are no cures;
The body weakens
But love endures.

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You have wrote your poem from your heart Peter. ..I do exactly the same and's helps us to deal with all the different issues this disease throws at us...when ime aving a bad day I will read your lovely poem to cheer me up..keep writing it's a to you both

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Dear Peter, take courage from all these comments. My husband, Richard had Vascular Dementia /Alzheimer’s, known as Mixed Dementia, I cared for him for four years until he was admitted to hospital, then locked down stopped my visits. He is at peace now. It’s a cruel disease, stay strong.

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Lovely poem Peter, you are doing a great job. The poem sums things up very well. I looked after my mum who was diagnosed later than Joyce. And like Joyce, my mum was great fun and joyful. All the very best to you both, Jackie

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A beautiful poem Peter.
Mirrors my thoughts and feelings completely.
Our life is changing almost daily, but he’s still my lovely husbandxx

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I have tears reading this. I am 80 and am forgetting many things so feel scared. Your love for your wife, is just beautiful to hear. May God bless you, your wife and family.

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God Bless you Ginny. I wish you all the best for your future health and happiness❤🙏
I have lost a good friend to vascular dementia and Alzheimer's. His lovely Wife is finding it hard to cope. My Sister also has dementia and lives alone after losing her dear Husband two years ago.
Life can test us to the limit but I am sure there is light at the end of the rainbow. 🌻🌷🌺

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My husband Frank and I married also in 1974 in March. Frank was diagnosed around the age of 63 with early onset Alzheimer’s but we believe now he had it much earlier as he made many mistakes at that time in his business and we lost our home and worldly valuables, not that those things matter in the end.
He is now 69 and eight weeks ago I had to put him into residential care as he had started to not recognise me at times. He is settling well but his short term memory has gone, he doesn’t remember me visiting every week. II know he still loves me and I love him. I have been grieving for the husband I have lost as I know he won’t be coming home. This disease is horrific. I admire anyone who can care for their loved ones longer than I did.

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Lovely poem
My wife was diagnosed when she was 57 after also having hysterectomy and atrial fibrillation ops. Cant be a coincidence

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Lovely words Peter, even in illness Joyce was a wonderful friend to my mum, Rose who was also diagnosed very young! Love to you both, Amanda (daughter of David and Rosemary) ❤

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Dear Peter and Joyce - I so often think of you! And working with words in this way is such a beautiful way of exploring and processing your journey of love and life! Thank you so much for sharing with such open generosity - with love Louise

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A beautiful poem and it clearly illustrates your deep love for Joyce.

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Pete and Joyce, I share your feelings. I fully understand how you feel, Peter you are amazing to dear Joyce, and I’m so pleased. It’s one of the worst illnesses and my heart goes out to you both. Hang in there. Your love for each other so much, it just spills out. Your amazing.
I lost my lovely husband to this long and sad sad illness. Diagnosed at 55 lived for 12 years, and I lost him 6 years ago. His spirit will never leave me. Thinking and praying for you both.
Gemma bless you both

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That’s just how it is Peter. Such a difficult time for you for such a long time. Joyce has always been so positive and you’ve always been there to support and encourage her. Think of you both often. Take care

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