Jacky’s story

My husband of 18 1/2 years, who was diagnosed with Alzheimer’s in 2012 at 70, is in full-time care. My husband with a great sense of humour, love for Elvis impersonators and holidays together to Las Vegas. My husband, Dave.

But I feel now like I’m divorced and I didn’t want to be divorced. Dave meanwhile asks me why we’re separated and if he has done something wrong.

First signs

I wish I didn’t dismiss the early signs that things weren’t right; the sleepless nights when he’d be anxious about his DIY work for a friend, constantly asking me for reassurance which was a far cry from the man I knew; mixing up conversations he’d had with people; and not remembering names.

Jacky and her husband Dave

Jacky and Dave on holiday in Crete

From the day when Dave was diagnosed to what followed I knew that we had caught it early. It allowed us to discuss any plans we needed to make. We still did everything together at this point, from the carers groups to trips to the theatre and socializing with friends and family.

But when Dave started to get lost on his favourite walks around our home in Hastings in East Sussex, the pressures started to mount. I gave up my work in children’s social services to care for Dave full-time in 2018. We then moved to Lincolnshire to help me to do that.

It wasn’t until a year and a half later that day care was considered, with Dave going one day a week. The routine worked really well for us; I could spend some time working on the bungalow and Dave would involve himself in the day centre’s singing activities.

However, this was all swept from under our feet when Covid-19 struck.

Jacky and her husband Dave

Jacky and Dave enjoying afternoon tea

Locked down

He couldn‘t understand why he couldn’t go out. Colouring, games, music for dancing, and growing runner beans; these were all things I set up for Dave to do round the house. It wasn’t enough, even though Dave enjoyed doing these in groups out in the community.

Dave had always been the kindest and most loving person, but as his dementia developed and lockdown went on, he became more confused – he started to not only hurt himself but to also hurt me, possibly due to the frustration of lockdown and sundowning.

When he was working at a social services residential children’s home, he was trained to perform wrist locks, which then actually became illegal and safe holds were carried out instead. Every time he put me in one of them, it would be impossible to release myself. I had no other choice but to call the police. They came round four or five times. After the visits they then made the appropriate referrals to services, which included a safeguarding officer at one point.

I also had reed diffusers dotted around the house and I would catch him lifting his fingernails out with them.

I’d sometimes be up four times a night to see Dave urinating in the fruit bowl or up the wall.

Even when I’d hurt my foot and was advised to rest, Dave would yank me off the sofa. I was trying to be one step ahead of him at all times.

I was trained in safeguarding through my job so I knew which steps to take to protect myself. I had a key ring marked with different colours so I would know which key would open and close which door to protect me if Dave was being unpredictable. I also had a lock put on the kitchen door to stop him tearing his fingernails out with any utensils.

Meeting my Admiral Nurse

It wasn’t until July 2020 that I was referred to the Admiral Nurse service at St Barnabas Hospice by the local day centre.

My Admiral Nurse Christa allowed me to get a sense of what was going on in my husband’s mind, in a way that no one else had. Sometimes Dave would get angry with me and say: ‘I’ve got no money, no coat, and no shoes.’ Christa would say that they could signify essential things to give him comfort.

She also gave me credit for what I knew about Alzheimer’s. After hours of being on the phone to so many different people, I had a sense of relief that someone believed me.

Jacky's husband Dave

Dave on holiday in Corton, Suffolk in March 2020

Christa was there for me as well after a visit from the police due to Dave’s behaviour. Community health professionals then made a decision, following my need for respite, to transfer Dave to a mental health assessment unit. I was initially told that he would be there for two weeks – he actually ended up staying there for two months. I still don’t know the reason why.

No one could give me a straight answer of when I’d have my Dave back – I really wanted him home. I was always crying but I could offload to Christa.

At the pre-discharge meeting, the staff confirmed that carers would need to come four times a day which wouldn’t have suited either of us. I understood that I had to do what was best for Dave and myself. Christa supported my decision and allowed me to see things from a different perspective.

Jacky and her husband Dave

Jacky and Dave on their wedding day

Long-term care

With Dave in care now, we had a Continuing Healthcare (CHC) meeting. At the meeting the home said he wouldn’t be able to stay there unless he had fully-funded nursing care, plus a 1-2-1 due to his needs. It was sheer panic and I was upset. Christa intervened to say to the assessors that I’d been through a traumatic time; no one had said that to me before.

I found myself in a situation where I had to reduce my outgoings, so cutting back on TV packages and how often I used my car. I felt like I was being penalised because of Dave’s condition.

Without Dave in the house, it does get lonely. Even in his Alzheimer’s when I needed help with anything, I’d just ask Dave. He wouldn’t know but it was just knowing he was there which helped.

Who am I now? A wife separated from her husband, and a former full-time carer now living alone. Without Christa to talk these things through, I can’t think how I would be able to manage without her.

The Lincolnshire Admiral Nurse service, which provides dementia specialist support to families in the area, is hosted by St Barnabas Hospice with additional funding from Lincolnshire County Council and Dementia UK, and now Lincolnshire CCG. It has been made possible by an award in June 2020 from Postcode Community Trust, a grant-giving charity funded entirely by players of People’s Postcode Lottery.

Admiral Nurse Dementia Helpline

Anyone with a question or concern about dementia (including Alzheimer’s disease) can call our Dementia Helpline for free on 0800 888 6678 or send an email to helpline@dementiauk.org

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