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.
Viktoria Hoel
saysDear Peter,
I read your story with a lump in my throat - although it is sad it is also inspiring to see your love for Joyce through your words and in your beautiful poem. I am actually writing my doctoral dissertation on relationships and communication when living with Alzheimer's and other dementia-related diseases. I would be truly honoured if I can introduce my dissertation with the moving words of your poem. If you would allow me, of course. Warmest regards, Viktoria
Peter Baker
saysNancy. Battersby
saysI too am the caregiver for my spouse but it is my husband. He has gone through many stages and it is the hardest thing I have ever faced other then my sons death. He went through getting lost and an accident before I realized what was going on. We had just retired and moved to another state where our finances would go further. I am devastated and overwhelmed with doing everything he took care of and my tasks plus taking care of him 24 hours a day. He went through a violent stage, a falling stage and many others but I haven’t been able to place him in a facility because he still knows who I am even though he doesn’t recognize anyone else. I’m so scared of what is to come but need to have him with me as long as I can.
Anonymous
saysNancy, we are really sorry to hear about your challenging situation.
If you are based in the UK, we recommend speaking with one of our dementia advisers to discuss this further. They will be best placed to provide you with advice and support. Please call our Dementia Connect support line on 0333 150 3456. More information on opening times: https://www.alzheimers.org.uk/dementia-connect-support-line
If you're based in the US, please contact the Alzheimer's Association helpline: https://alz.org/help-support/resources/helpline
Or if you're based in Canada, please contact the Alzheimer's Society of Canada helpline: https://alzheimer.ca/en/Home/ContactUs
Alzheimer's Society blog team
Felicity Woodcock
saysThe final line' Love endures' is so important to remember as we care for loved ones through this cruel disease. A wonderful poem which will certainly give me strength. Thank you.
Katherine
saysWow that is beautiful , I can relate to it in another light as it’s my grandmother that has dementia . I find it hard to except it but your poem makes me see another light
Peter F Gribble
saysI can relate to this so closely although my wife was 68 when diagnosed. Like you we tried to live life to the full for as long as possible but female health issues reduced the trajectory greatly. Only days remain now but love is all that counts!
Taylor Deb
saysOh wow. Beautiful.
Donna
saysSuch beautiful words ..my mum has been declining in memory for 2years just diagnosed with Alzheimer's as her only carer it's tough as I also have to work..
Dorothy Dwayre-Wood
saysYour poem was so lovely to read and I am so glad that you are both trying so hard to stay together. I know how hard it is, I supported my Mum for 25 years until she passed away at the age of 95. Our family became experts in dementia and this will stay with us for ever. it is a very sad disease but if you can celebrate the small achievements then life will be easier and you will be able to relax and take life as it comes.
Janet Smith
saysThank you for your lovely poem. I just reminds me of myself I have been housebound for nearly nine years with various illnesses. But two years ago I started like your wife did I was having careers twice a day but that wasn’t enough so my husband had to retire from work and look after me because I couldn’t be left alone. I am physically disabled and I am losing my memory so I have had one test and they said it was memory lose well since then my memory has deteriorated very fast and some days what with the pain I am in and my memory just doesn’t work right any more, I ask my husband things that many times that sometimes he has to leave the room and count to ten because I know I cause him a lot of stress with just my other disabilities I have got without me keep saying to him the same thing over and over again.
So thank you for your poem it was really dry nice and understanding. I hope you and your wife have many more wonderful years together all my love and prayers for a special couple Janet Smith xxxxxxxxx
Christoper Horace Steele-Perkins
saysYou have great courage Janet and your husband is really supportive. I wish you both the best. Chris
David Clarke
saysThankyou Peter - lovely words
Cheers
David
GeorginaRyan
saysBeautifully written account of a horrid happening. Loss of communication when there is no change visually is so very hard to accept and makes for such a dreadful loneliness.
Cushela Robson
saysCourage and steadfastness are required for life's health marathons.
My career has been as a health professional ... You have my sincere admiration for the complex challenge you're moving through. I hope you always say yes when supportive offers are forthcoming. Take care. Regards from Cushela in New Zealand.
Katie
saysWhat a beautiful heartfelt poem. I pray that I can be as strong as you are as I am struggling now with my husband’s early stages of dementia at the age of 70. Every day is a challenge.
Susan
saysLovely poem, keep strong and well together.
Sharon
saysGod bless you Peter, while I can relate to an extent. I am a daughter, that after my Father past suddenly, my siblings and I were in for a surprise. We think our Father hid how bad our mon was, but we realized very quickly what challenges he faced alone. Now 9 yrs later Mom is in a nursing care facility that is close by that we can see her regularly, and pray we are doing the right thing. It truly is like losing her every day. It's a horrible disease and pray that you can survive the "tides" that come. Again, God bless you! Love your poem too!