Dementia Support Line
Real stories
Peter's dementia poem for 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 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.
Gerald Mchugh
saysThank you Peter your poem mirrors my situation with my wife of 56 years. Your story touched my heart this morning.
Philomena Wilson (Ena)
saysWhat a lovely Poem.
My husband Brian was Diagnosed in January in Australia so we had to come home nd I am struggling, I have read a lot of the comments and I am trying to cope, I love him so much its heartbreaking to watch the man who did everything for us be so lost.
Louis Vydelingum
saysPeter, I was very moved nearly to tears by your account and poem.
My wife suffers from Alzheimer's diagnosed 5 years ago.
Her forgetfulness is getting worse and repetitive behaviour which I am not really tolerating well is getting worse.
I am learning and trying to be tolerant of the situation that I find myself in but I will change in time for her sake.
It is a situation that is very trying for a partner and I do not make any light of it of a disease that can affect many aspects of life itself.
One must plod on and suffer silently.
Jenifer Bullock
saysYour poetry is wonderful because it’s so true.
My 78 year old mam was diagnosed in January with mixed Dementia. She lives with me and we have no other family. I saw this coming on about 3 years ago but she didn’t want to know and wouldn’t go to the doctors. I used to loose my rag with her but I’m much more tolerant now. We are grieving for the person whose not there now.
It still hit me very hard when the consultant gave her diagnosis. I’ve finally told all our friends. I still fill up when I tell anyone. It’s very very hard to accept and this dreadful Covid has not helped at all. She loved to get out every day before. It’s a horrible disease and you could do more for your darling wife. We have to look for the little joys in life now and as you say just try and carry on doing our best. God bless you x
Desmond Sequeira
saysNo one can fail to be moved, Peter, by the situation you are in and how you are dealing with it. It takes courage and a clear understanding of the changing conditions which you demonstrate. I’m benefiting by your experience to face my own situation. My wife was diagnosed with Alzheimer’s in 2015 when she was 88. We both loved life and travelled extensively so I decided that to go on a round the world cruise in the 90th year of her life, before she felt incapable to enjoy it. I ensured that at every port we travelled by coach with her wheelchair to the interesting places and sometimes we did it on our own. Luckily I was able to to push her wheelchair for miles and have lunch at some interesting restaurant. In 2018 she had a stroke and now she is unable to walk or even stand and is wholly dependent on carers to help her 24 hours. Luckily the care home provides all the care she needs. However in this Corvid situation I was not able to continue with my daily visits but we could still meet in the garden weather permitting and from yesterday we are allowed a 20 minute visit in a heated cabin with screens via a pre- booked visit. Unfortunately my Pulmonary Fibrosis with only 75% lung capacity limits my ability to do much and I doubt when spring comes I’d be able to wheelchair her as before to the nearby park.
But I find a lot of positive things if we can accept that there’s not much we can do. It is what it is but there is an immense amount that we can keep discovering and best of all is that my wife has the innocence of childhood so it’s a continuous process of finding ‘new’ discoveries and delighting in them. And for me it is discovering her as she once was was a child.
Thank you Peter, for your valuable perspective. I’ll try and write some poetry myself.
Jane Patton
saysWhat a beautiful poem.Thank you for sharing.My husband has been recently diagnose with Lewy Body dementia.I feel it started much earlier but very hard to accept. He is still at home and I care for him with the help of my two kids.My daughter lives with us my son has just married.Being the main care giver can be very stress full but having support from you all and friends and family does help.Thank you for all your stories and help and to know I am not alone.
Debi
saysThe words resonate the love and devotion you both so obviously share. My mum, also has this awful condition , compounded greatly by the loss of my father in the spring of this dreadful year of uncertainty. We are now struggling as a family, to meet mums increasing needs, but I fear, only people who are in the midst of Alzheimer’s really understand the complexity of this illness. Professional help is a navigational nightmare ........... your words are golden. Thank you for sharing them. Stay safe all. Debi.
Sandra Burch
saysBeautiful words Peter , so sad to hear about your wife Joyce
I have a sister with dementia and know hard this is having to see someone go through this silent illness
I live in Scotland and my sister lives in Essex, so I am struggling at the moment not seeing her since March, my brother is her main carer
Clare Phillips
saysBless you Peter and Joyce. Your love for Joyce shines through your words and she will feel that love which speaks deeper than words or memory.
Christopher Roadhouse
saysThats beautiful Peter. I hope to read to read more of your poems in the future. Stay strong for you, your wife and family. All the very best.
Sue Hill
saysBeautiful poem, sentiments completely understood as mum suffered too for many years whilst dad and then I cared for her. Dads devotion was incredible. Thank you for reminding me of a time when I was privileged to care for my lovely mum.
Gwenda McLean
saysYou are such a blessing your wife. She is so fortunate to have someone who loves her, like you do. Hang in there. The poem is beautiful.
🙏🏼
Paula Groves
saysBeautiful sentiments so heart felt may you enjoy some good days together still
Christine A Jones
saysA lovely poem Peter. My Mum died last year after suffering from dementia for 9 years (not early onset). It is such a cruel disease. Your love for each other shines through. I have recently read the book by Wendy Mitchell 'Someone I used to Know.' which is very good. She also writes some wonderful poems. It sound like you have a wonderful routine, very important I think. Keep on keeping on.
Wendy Butcher
saysHow lovely, thank you for sharing this with us. Your love for her is very clear. I wish you both all the best, stay safe and healthy.
Wendy. X
Ann Waggitt
saysWhat a beautiful poem. My story is similar to yours Peter. My husband was 59 and had to retire earlier. I worked 8.00am - 6.00pm and had to leave my lovely job. We are in our 7th year, and worry about what is a head of us. Well done Peter..besutiful.