Jen's parents one evening, smiling

Jen's story of her dad's dementia: ‘Mum has experienced the worst of it all’

Jen shares her family’s experience of caring for her dad, who has dementia, and the tough decision to move him into a care home when her mum was pushed to exhaustion.

Our dad, James – everyone calls him Jim – was diagnosed with dementia in 2016, aged 66. He’ll be 73 this year.

It all started when we noticed he was getting confused and forgetting things. Dad was an engineer, very switched on and always quite active, so this change was noticeable.

Doctors performed tests and Mum got an appointment at the GP. I remember when she phoned me; I was at work and even though we were all prepared for something not being right, it was hugely upsetting to hear the words that Dad had been diagnosed. It was a horrible time.

From there, we gathered as much information as we could. That’s when the reality of it hits. You get an idea of what to expect and what’s coming, so that was really tough.

Before, none of us knew much about dementia. It made it very real and scary.

The doctor told us there wouldn’t be much of a decline in the first few years but that was wrong. I’ve learnt to take estimates like that with a pinch of salt - everyone’s dementia journey is different.

Two pictures of Jen's parents, including from their wedding day

Jen's mum has always wanted to do best by Jim.

Leaving the family home

Dad started sleepwalking and was able to let himself out of the house, so eventually Mum and Dad both moved out of the family home to assisted living accommodation with a locked entrance. That was sad as we had grown up there and made a lot of memories.

His incontinence got a lot worse when they moved. That was hard for Mum to deal with – nobody would ever really be ready for something like that. There was also a point when he managed to get out.

Someone found him in the early hours, round the corner in his pyjamas. It was worrying.

Along with their move, Dad was going to day care, which gave Mum some respite and he would really enjoy it. The staff would always comment on what a lovely guy he was. They would do activities and he would get to socialise with others.

My sisters - Gemma, Lucie and Sian - were incredibly helpful and popped over to see Mum when she was struggling in the assisted living facility. They would clean and do other bits for her. I was extremely grateful for this, as was Mum.

Jen with her parents and three sisters, standing together in the garden, smiling

Jen with her three sisters and their parents.

Changes after a hospital stay

On Boxing Day 2019, Dad went into hospital with a form of pneumonia and stayed until the first week of January. It was a very scary time and we thought we were going to lose him at one point. I think that experience had a very negative effect on him.

After that, he went for two weeks of respite care at the care home where he’d been attending day care. I went with Mum and we dropped him off together. It was a sobering experience.

I remember having to cry in the toilets because I didn’t want Mum to see me upset. It was hard.

When the coronavirus pandemic hit, all of Dad’s activities and groups were cancelled - that had a big impact on him. He went from being busy to basically doing nothing every day. That was in March 2020 and then over months that followed, he deteriorated further.

We knew the time would come that Dad would need further care and Mum always wanted to do best by him. We moved Dad into a care home in June 2020 and because of the pandemic, visits weren’t readily available.

I didn’t see Dad from February to November that year, but when I did go, his face lit up and he was so happy to see me.

Jen, wearing a mask, visiting her dad at the care home, behind a screen

Jen's dad was delighted to finally see her after such a long time.

It was scary making the decision to put Dad in the home mid-pandemic.

We looked into all the safety procedures beforehand and they’re really good there. They test the residents regularly and all wear the right PPE. They already knew who Dad was and we were relieved they were taking him on.

We knew it was a safe place that we were all familiar with. They were aware of his individual needs and handled the situation well, quickly taking action on the occasion a staff member tested positive.

The effect of Dad's dementia on Mum

Mum has experienced the worst of it all as she’s been through the whole journey alongside Dad.

I know at times she found it frustrating because there wasn’t much she could do. Dad used to be a big tea drinker and suddenly started making it with cold water. It was little things like that, but also big things, like his incontinence, and she got to a point where she felt like she couldn’t do some things well enough or safely enough.

We would tell Mum it’s nothing to be ashamed of to admit she needed help, too.

It was hard during the pandemic because we couldn’t go and help Mum. She was trapped, in a way. We helped her make the decision about the care home, reassuring her that even though she felt guilty it was the right decision. There comes a point where you just have to realise you can’t give him the care he needs. She feels a lot better and reassured now he’s in the home.

Ultimately, we all feel that the pandemic has robbed us of time, the most important thing when dealing with dementia. We feel that if we could have spent more time with Dad or have been able to see him more, he may have not declined as much as he has.

Sign our petition to #CureTheCareSystem

Jen and her family shouldn’t have to wait until they’re exhausted to get the dementia support they need, for themselves and Jim; the government should cure the care system to provide the support they all need.

Sign the petition

Huge thanks to Jen for her recent donation to Alzheimer’s Society. Jen designed a forget-me-not print, which was used to create a range of dungarees for a company called Lucy & Yak.

'I thought of the design ages ago and put it forward. When they accepted it, it was amazing. I wanted a physical reminder for people – being able to think of their own families and friends. It was a little nod to everyone affected by the condition and a big nod to Dad.

'Lucy & Yak were very kind in that they paid me double the normal designer fee when they found out that I was donating it.'

4 comments

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Muy valioso el testimonio de Jen. Efectivamente el COVID-19 hace cambiar la rutina con los parientes enfermos, aislándolos como medida de protocolo, condición que les afecta. Esta pandemia esta dejando secuela en la salud mental de la personas. También tenemos que tener presente ello, pues aumenta la incidencia de la demencia.
Este tema en el Perú lo venimos abordando
Gracias.
Edwin Delgado
ONGD FOCCADI
ONGD FOCCADI,

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It is the lack of proper communication which is so difficult . My husband is in a Care Home because he is doubly incontinent and his spine is crumbling and his short term memory is non-existent., but intellectually in the last few weeks we have discussed Chaucer’s Canterbury Pilgrims, the battle of Bruanburgh 972 and this week Black Tudors. All this on 2 short visits a week and numerous phone calls. I am not allowed into his room , no hugs or kisses , and no chance to sort his books and other belongings out. It is no life for a highly intelligent person. Other Care Homes in our area are relaxing their rules a bit but not ours . There seems no acceptance of the need for his intellectual health though the physical care is very good. . The staff are not unkind but clearly not on his wavelength. Despite my requests there is no spiritual support either .My GP thinks I am doing a grand job but I am not convinced.

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Hello Elizabeth,

We're really sorry to hear this – it sounds like the care home's restrictions are making things very difficult for you and your husband.

Please know that we are here to provide you with support. Our dementia advisers are available through the Dementia Connect support line on 0333 150 3456. (Find more information about the support line, including opening times, here: https://www.alzheimers.org.uk/dementia-connect-support-line)

You might also like to talk with other people affected by dementia within our online community, Talking Point. Feel free to browse and read others' experiences, or you can create an account to reply and connect with others who may be going through a similar situation: https://forum.alzheimers.org.uk/

We hope this is helpful for now.

Alzheimer's Society blog team

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Hi, I have just read your story after a recent admission currently to a nursing home by my father following a hospital stay. So sorry and sad to see parents free falling as they get old. My dad had deteriorated fast following a fall Christmas before last which resulted in a bang to the head. That visit saw him recover from Pneumonia but further tests etc found Bowel Cancer. Treatments worked but recent problems and hospital admission has seen him fall into another world. He's 4 weeks into his stay but assessment doesn't sound promising. Thanks for your story and best regards to your family. - Mike P.

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