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Little did my husband John and I know in 2017 how much our lives were about to change. My name is Linda. I’m sixty five years old and my husband John is eighty two and has Alzheimer’s.
Looking back I first noticed something was wrong when John was trying to make a plant storage arbour in our garden. John was always a practical man and suddenly he stood in the wood yard looking confused and didn’t know what he needed to buy. Thankfully I’ve helped him over the years and stepped in to assist with a list I’d made.
The following day the wood arrived and we began building and assembling from our rough drawing. Sadly things didn’t go to plan. John had forgotten how to use his tools, how to cut the wood, drill the holes and screw the project together. What would have usually taken a day to build ended up taking three as I had to instruct him every step of the way as best I could. Drill this bit, cut that bit put the screw in there etc. Finally it was finished and thankfully it’s still standing!
At the time I was also running dance events which John enjoyed helping with. We’d arrive at the hall early and John would set the music gear and lighting up whilst I set the hall up. One evening he stood there looking at the vast array of cables and didn’t have a clue which ones to use or where to put them. I couldn’t understand what was going on and was stressed and said “What is the matter with you” not realising at the time he had already started the Alzheimer’s journey.
John had always been fit and healthy enjoying playing cricket, squash, rowing and modern jive dancing which we started doing when he was fifty five and continued for almost twenty years. John was always able to keep up with me and the busy pace of life we’d always enjoyed.
Fast forward to Autumn 2019.
By then things had progressed so we went to see our GP and were referred to our local hospital. We saw the doctor who gave John a few memory tests and drawings to complete then she asked him if he would like a brain scan. The scan was arranged then we went back to see her. We were told the results were inconclusive and she asked if John would like a more detailed scan. We waited. No appointment arrived so we went to John’s next appointment.
We told the doctor we were still waiting for the second scan appointment to come through to which she replied “We haven’t had time to have a meeting to discuss this and have decided to put it down to mild cognitive impairment so we won’t be offering another scan” We came out of the room totally devastated. We knew what Alzheimer’s looked like as John’s brother and father had it.
We both knew something was wrong, we wanted to put our affairs in order; LPA’s Wills etc. and we’d just been left to our our devices and had been let down.
2020 and the pandemic arrived. We were stuck in isolation like everyone else and John’s memory deteriorated. I was having to do more caring for him and was struggling coping with what was going on emotionally so every night I slept in the other bedroom. It was the only place I could get a break. John couldn’t understand what was happening and why I was like this. I felt numb and probably went through some sort of breakdown and all I wanted do was withdraw into myself.
In December 2021 after going back to our GP in desperation we were finally referred back to hospital and were greeted by a new doctor. We told her of our previous experience and as she listened she looked shocked. When we’d finished she just said “I’m so sorry this happened to you. What can I do to put things right”. We both said we wanted John to have the more detailed scan and she made the appointment.
The scan came back and she showed it to us. We sat there looking at all of the black areas showing where John’s brain was now disappearing and wondering what would happen next. The radiographers also wanted John to go back for another scan as they picked up what they thought was a benign brain tumour that had probably been there since birth so off we went again as they wanted to make sure it wasn’t growing, or making his symptoms worse. The results came back that he had been born with this and thankfully he didn’t need any treatment.
The doctor then asked John if he’d like to try some medication; not as a cure as nothing could be done to slow the disease but to help him think more clearly. Having had a bladder problem since 2007 meant some medication wasn’t suitable for him so she suggested he try Memantine starting on a low dose. He takes 15mg a day and it does help.
Sadly John had to give up driving soon after diagnosis. Having been a police class 1 advanced driver for many years he was devastated. I had to give up my job and am John’s full time carer.
We found that getting support was not going to be easy as nothing had opened up since the pandemic lockdown. After a few months one short memory cafe a month started and that was it.
We were frustrated and I contacted our county council who had no idea about the lack of services in the town where we live and frankly were not interested. The Dementia daycare suite in town stopped running a year or so before the pandemic and was closed and the nearest one was in the next town and had a long waiting list. John was finally offered a place last year in the next town and continues to attend.
My daughter could see how difficult things were for us all and decided she’d love to set up twice monthly live music sessions for those with dementia at her bar and with consultation from our newly established Dementia & Me Coordinators and Age Concern. These have been amazing events with live musicians volunteering their time playing music from the 1960’s up to present day enjoyed by people from other towns as well as ours. People enjoy refreshments and sing along and dance for two hours and it’s everyone’s ‘Happy Place”
We now have two Mild Cognitive Stimulation Therapy groups a week for up to ten people in our town which John enjoys. Age Concern set up two monthly memory cafes in our town which attract around thirty plus people each time and now we also have Zest, an art based activities group.
John and I participate both online and face to face in ‘Time For Dementia’ where we help medical students understand what it’s like living with dementia and how to help make things easier for them as part of their training which we both enjoy.
We still haven’t any daycare in our town but we hope one day someone might set something up as there is a need for it.
Sadly councils are not putting in clauses that state if a dementia contract is awarded to a charity, facilities and services should be spread equally across the whole area the contract covers. It shouldn’t be a postcode lottery.
Our local council provided figures showing 383 known people (as of June 2023) in our town (population of around 35,000) are living with dementia and probably almost as many haven’t; or don’t want to come forward for diagnosis and help.
We decided to renew our wedding vows to help bring back some memories in 2022 as sometimes John doesn’t know who I am. We had a wonderful afternoon with our family in the church he went to as a child followed by afternoon tea at a local cafe.
John continues on his journey. It’s been noticeable that if he’s out every day doing something he’s so much better as he gets plenty of cognitive stimulation. It’s no good just staying indoors. He’s happy and lives well with dementia; and we try not to think too much about the future.

‘Is there anybody out there?’ is a personal reflection of the journey of my mother’s Alzheimer’s Dementia and my lived experience with her. It recounts the total isolation we both felt (individually) during this tumultuous journey. I was not living with her for most of the time as I was abroad but moved back to London six months before she passed and managed her care both locally and from abroad. When I returned to London there were days when I would sit in my car, having just visited her, and not know whether to laugh or cry just asking myself “is there anybody out there who understands how I’m feeling, or more importantly, does anybody care?” Hence the title ‘Is there anybody out there?’
I was oblivious to the issues surrounding Alzheimer’s Dementia and whenever I heard of anyone suffering from it, my internal reaction would be of ‘pity.’ It was only when mum was diagnosed, that it dawned on me that I was in for a long and painful journey.
My mother was diagnosed in September/October 2018, but I realised that she had been suffering from the disease at least a few years prior to the diagnosis and her Dementia Advisor concurred. I noticed some of her behavioural changes from 2013 onwards. Whilst we experienced the journey together, there were elements of the journey that we experienced alone. My loneliness came from the inability to share it with another nuclear family member. I had no sibling to share the experience with. Talking to a friend or even my husband was not the same as talking to someone who felt responsible for her. I was accountable for all the decision making that took place and I constantly doubted myself. Decision making was always conducted as a family and now I was making all the decisions. When mum was lucid, I would doubt whether she had dementia and then she would slip into a fog and I would be back to square one. The blank look in her eyes; that empty look that the lights were on, but nobody was home still haunts me today.
One of major issues I faced was how to deal with mum when she was being indecisive about important matters. The family home needed to be sold to be able to fund the care support and required both our signatures. She was keen to sell the house but there were days when she would become indecisive and say that she wasn’t going to sell, and then change her mind the next day. I found these moments extremely difficult primarily as I knew the dire situation she was in financially. No house sale meant no care support and she required about 18 hours a day of care support. The house was eventually sold and support continued.
In terms of mum, I have often reflected on how she might have felt during the years that she lived with dementia. I know that there were moments in the last 6 months of her life that the carers would call me and say that she would sit in her chair and cry. She needed help with bathing, getting dressed and at times, eating. I realise now that she was probably mourning her independence, but I didn’t realise at the time. She had always been an independent woman, worked, looked after us as a family and had her hobbies of cooking/baking, gardening, sewing, knitting and was an avid tennis and snooker fan.
There are so many situations that in hindsight I would have managed differently. I didn’t have the awareness then. It’s taken my mother’s death for me to become more aware, have a greater understanding of the disease and become more compassionate in the process.

Howard and I first met and started dating when we were at school together. We re-met 22 years ago and celebrated our 20th wedding anniversary this year. We celebrate everything as much as we can now.

My father and grandmother had dementia, as did Howard’s father, so I knew he had dementia about four years before he was diagnosed.

Howard studied at The Royal College of Music and composed music for TV, radio and theatre. He’d always been very practical but building something in the garden, even with instructions, became baffling. Sometimes he’d get on the wrong train platform and his driving also became worrying. He would say he was going to do the recycling and then he’d be gone for ages.

The memory clinic was reluctant to diagnose him because he still appeared reasonably independent, even though scans showed the presence of the amyloid protein connected to Alzheimer’s disease.

Howard took the car for an MOT test in 2021 and a few days later he was accused of not stopping after an incident. It was after this that I became stronger in my insistence on some form of diagnosis. Howard was eventually diagnosed with Alzheimer’s disease in August 2021.

It’s not easy to deal with. No-one understands the cost of care or what a carer goes through.

When you’re diagnosed with cancer you get a referral to a consultant, and you’re told through tests and scans what type of cancer you have. Whereas you’re not with dementia.

We only know what type of dementia Howard has because he’s taken part in clinical trials. There is no official requirement for all those living with dementia to have a scan to provide an accurate diagnosis.

Diagnosis of Parkinson syndrome and dementia with Lewy bodies also frontal lobe syndrome

I put my life on hold for my sister when she was diagnosed and cared for her for 10 months 24/7 until a fall at home took her away and her future decided by strangers and human rights ignored. I have been trying to put things right on her behalf for over 2 years at a a cost of over £2ooo.
I would like to see laws to protect human rights, to ensure POA'S act with protocol, and ensure OPG are fit for purpose to investigate concerns raised , rules should be put in place for transparency when social services make decisions.
These issues relate to my personal experiences in my ongoing fight for justice for Marion.