Your Stories

Hertswise strive to make later life a fulfilling experience for all. Here you can read the stories of just a few of the people we’ve worked with.

Karen’s Story

My mum is 78 years old and lives in Hertfordshire, she was recently diagnosed with vascular dementia. She is very independent, but has not attended any activity or social groups before and was reluctant to do so.

The locality worker from Hertswise made a home visit and had a chat with my parents, and then told them about their local groups and their one to one service. Initially, I thought the one to one service would be great to help my mum get into doing things, but when the locality worker talked to mum she liked the idea of a group and I saw a change that day in my mums’ demeanour, helped by the way the worker delivered the information and spoke to us.

My mum decided during the visit that she wanted to try with my dad to go to the local Hertswise group run by the locality worker, and so that’s what she did. Since then my parents have attended two local centres regularly as well as the Hertswise Dementia Group and she has been really enjoying it.

She is now getting out more and doing things she would have never done prior to the visit from Hertswise.

*Karen, Daughter

Beth’s Story

Diagnosed with probable Alzheimer’s, Beth* quickly became reluctant to leave the house, to the point that her husband Eddie* worried about her mobility. Beth’s diagnosis left her withdrawn and distressed, so her GP referred her to Hertswise for one-to-one support.

At her first one-to-one appointment, Beth admitted that she didn’t want to join groups or social activities as she lacked the confidence – but over the next few sessions, she began to feel more like herself. With some chair-based exercise to help with mobility and short walks around her neighbourhood, Beth’s confidence began to grow.

Over the 10 weeks of one-to-one sessions, Beth and Eddie found that the help they received through Hertswise was making a noticeable improvement. Beth loved to chat about her past and fond memories, so her Hertswise support worker helped her create a Lifebook to record these memories. The couple were also referred to Age UK Hertfordshire’s Information and Advice team, who checked their eligibility for the Blue Badge scheme and other benefits that would relieve some financial pressure. Their Hertswise support worker noticed that Eddie was struggling to manage the household by himself, with tasks like the weekly shopping leaving him utterly exhausted. With a referral to HILs Community Meals on Wheels, they began to receive healthy meals delivered right to their door, leaving Eddie more time to rest – and to spend with Beth.

Though Beth’s initial diagnosis severely shook her confidence, 10 weeks with a Hertswise support worker has made living with dementia an easier and more fulfilling for both Beth and Eddie.

*Names have been changed to protect privacy


Debbie’s Story

Debbie*, 41, is both wife and carer to 66 year old Mike*, who has been living with young-onset dementia. While preparing to return to work part-time after an extended leave, Debbie became concerned about finding someone she trusted to support and care for her husband while she was away.

Debbie got in touch with Hertswise, who were able to refer her to several services that could help. Through these referrals, Home Instead found Mike a companion who could provide one-to-one support while his wife was working. The people at Crossroads assisted Debbie with an application for a ‘Helping You Care’ grant that would help them financially as she could no longer work full time.

Meanwhile, the team at Hertswise put Debbie in touch with our Young Onset Dementia Worker, who runs groups and activities for local people affected by young-onset dementia. Debbie and Mike started attending one of these local groups early this year, and have been looking forward to it every week since.

* Names have been changed to protect privacy


Tessa and Vince’s Story

Photo by Pixabay on Pexels

Tessa* and Vince* had always been a sociable couple, but after Tessa was diagnosed with dementia she felt that many of her friends were dismissive of her struggles; they didn’t quite understand what she was going through.

After a home visit with their local Hertswise dementia worker, the couple decided to come along to a Hertswise Hub, excited for the opportunity to meet other people who could empathise with their experiences. By the end of that first afternoon with the group, Tessa and Vince approached the Hub leader with delight – they had gotten so much more from that session than they ever imagined, they explained.  They had found people they really could talk to, and activities they could enjoy as a couple.

The following week, the Hub ran a seated exercise session using rubber resistance bands. Vince, whose mobility is limited by diabetes and other conditions, was pleased to find that this was a physical exercise he could take part in. 

“I can do this,” he said. “Why has nobody told me about this before? Not my doctor nor my diabetes nurse. This is something I will do at home!”

Vince

Having found not only a community, but activities they could both enjoy, Tessa and Vince were glad to have discovered their local hub. They have been readily welcomed back every week.

* Names have been changed to protect privacy


Jenny’s Story

Jenny* lived nearby her mother Sandra*, and did a lot to help her during the day as Sandra had begun to show signs of memory loss. It wasn’t long before Jenny noticed that Sandra was neglecting herself in her daughter’s absence; she struggled with basic self-care, forgetting when she had last eaten and skipping meals.

Because her mother hadn’t been formally diagnosed with dementia, Jenny struggled to find the support she needed until she came across Hertswise.

Jenny reached out to our team to explain her difficult situation and was relieved to hear that her local dementia support worker could help. She and her mother were referred to a variety of local services who could help with some of the gaps in care, such as Meals on Wheels. Sandra was also invited to try 1:1 support, and both she and Jenny are looking forward to joining their local Dementia Hub and Carer’s Group, where they can become part of a community who can understand their journey.

*Names changed to protect privacy


Archie’s Story

Photo by Pixabay on Pexels.com

As his dementia progressed, Archie* started to become withdrawn and reluctant to speak much, especially with new people. Concerned, his wife Margaret and daughter Jen got in touch with Hertswise for more information about their local Dementia Hubs. Hertswise Dementia Hubs offer a sense of community among local people affected by dementia, as well as access to information, support and a variety activities based on the needs and interests of attendees.

Archie came to his first Hub session accompanied by Margaret and Jen to hear about the activities planned for the day. Archie joined in with the chair-based exercise session, which he decided he “enjoyed a lot” – so much so that he agreed he would return the following week.

Although nervous, Archie turned up to the next session by himself, with both Margaret and Jen rather anxious to see how he would cope at the Hub alone. When Archie arrived, a Hertswise team member waited at the door to greet him and tell him all about the singer they had visiting that day. Excited for an afternoon of live music, Archie overcame his nerves and was ready to dive into the session.

At the end of the afternoon, Margaret and Jen came to meet Archie and were thrilled to find him with a huge smile on his face. “I enjoyed that session,” he told them.

Archie has been attending his local Hub ever since.

* Names have been changed to protect privacy


Kim and Philomena’s Story

Being diagnosed with dementia is something that a family would always remember.

Philomena was diagnosed with dementia 17th February 2016 – a date that her family would never forget. She currently lives alone with the support of her Home Instead carers, and her two daughters to help her with her medication, ironing, shopping and meal preparation.

Once a month Philomena and Kim (her daughter) used to attend a dementia cafe in Bishops Stortford, run by The Alzheimer’s Society, which they both thoroughly enjoyed, but unfortunately it got shut down.

With the worry of Philomena not being able to have some social interaction, they got referred to a dementia hub in Sawbridgeworth by Hertswise.

” Hertswise run such an invaluable service that has been great not just for my mum but for me too!” – Kim, Philomena’s Daughter 

Ever since her first session, Philomena has enjoyed every moment of it “There is just so much to do and many opportunities to join in with things.”

With Philomena’s dementia getting progressively worse, she has been every so thankful for the opportunity to join a hub that is welcoming and helps her engage more in the activities.

“At home she now always talks to her carers and her cleaner about the things she does at the hub, and shows them what she makes – thus allowing her to have social interaction with them too.” – Kim, Philomena’s Daughter 

If you would like some more information regarding one of our hubs please contact Herts Help on: 0300 123 4044


The inspirational John Ley on life with Alzheimers

It all started so, so well. I met the beautiful Linda in Easter 1985, proposed on Valentine’s Day 1986 and in June three years later we were married.

Along came child number one, Thomas, born in October 1991. Sprog Two arrived two years later but when the midwife called for the duty paediatrician clearly all was not well.

“Is there a problem?” I asked.  “Yes, I think there is,” she replied. “She’s got Down’s Syndrome, hasn’t she?” The Doctor looked stunned. But  – and I don’t believe in this stuff normally – I had had a premonition on the journey to the hospital.

Katie was born with Down’s and suddenly our perfect lives were not so perfect. Quickly she became a joy but one morning – our wedding anniversary 16 years ago – Linda couldn’t wake her. She was rushed to St Mary’s in London and spent three weeks fighting for her life.

Katie had developed Type 1 diabetes but now copes admirably. And she has become my crutch, alongside her brother, since another problem decided to pop up in our lives.

Linda was wonderful with the kids, encouraging them, cajoling them, loving them, challenging them while I was working as a football writer with The Daily Telegraph, jetting all over the world to watch football.

But soon after she reached 50 we, as a family, noticed something wasn’t quite right. Linda would forget things, miss-place objects, get lost on routine journeys. In isolation, things we all do, but collectively a worry.

One neurologist confronted our fears with incredulity. She was only in here early 50s, how could it possibly be dementia? Linda’s dad had dementia. I knew. So, I think, did Linda.

After nearly three years of investigations – brain scans, lumbar puncture tests, countless MMSE tests – our worst fears were confirmed. At the age of 53 Linda was diagnosed with Early Onset Alzheimer’s.

A quite brilliant artist, she was developing her skills to the extent that she was selling her art, had a website and was thriving at what she did best. The art continued for a couple of years, but I noticed her paintings were now not up to their usual standard.

Linda’s deterioration has now become rapid. She cannot read or write. She seems to have tunnel vision, can barely talk and now has epilepsy and psychosis. I have to dress and wash her, help her at meal times and with her more personal needs. That’s fine. But as a family we have already lost a devoted mum and darling wife. She still looks so young, and when she smiles I see the Linda of old.

We have been lucky with help, both for Katie and Linda. Katie dances, plays the piano and teaches other special needs kids.

Linda now goes to day care twice a week and has four three-hourly visits a week from Crossroads Care.

She is looked after fortnightly by Turning Point, a charity for younger dementia sufferers, attends a wonderful music therapy group, Music 24, and goes signing with Singing Down Memory Lane. In addition MIND’s weekly Hub is a welcome break.

But once that is over, home can be a lonely place. I have lost my best mate, my lover, my soul partner. Recently she has been going into care for two weeks, and while I hate losing her for a fortnight I need that break to recharge.

To deal with everyday life I try and stay positive. I am still in my 50s – just – but I mix with many wonderful carers, who are older than me, and I wonder how they cope.

We had an extension built to accommodate the inevitability that Linda will eventually be unable to use the stairs. A downstairs bathroom with walk-in shower is already well  used, while her future bedroom is, for now, a music room with a piano – and a load of her art work on the walls.

To relax I am learning to tickle the ivories – badly – while as a family we have been ‘adopted’ by some wonderful people at The Golden Lion pub in Hoddesdon, Hertfordshire. All the locals know about Linda and Katie and look out for them. I can have a quiet pint in the knowledge that both are safe.

Without that refuge and the friendship of a growing army of carers – and their partners – I don’t know how I would cope. I still don’t know how I get by. It’s something you do. Unconditional love maybe? A reminder of those vows we took nearly 30 years ago? I don’t really know the answer, but I am determined to give the lady that was Linda Ley my unquestioned and total support for as long as I can. Because that is what love, in any form, is all about. Isn’t it?


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