Katrina's story “My Admiral Nurse helped me to cope with the guilt”

I graduated in the summer of 1994, and Ian and I had our first ‘proper’ date that October. I’d have married him there and then if he’d asked! Ian proposed the following July, and we were married in August 1996. Our daughter was born in 1999, and our family was complete with the arrival of our son in 2002. 

Ian was diagnosed with depression

Ian took early retirement in 2018 when he was 58. He had been with the Ministry of Defence for 40 years, but he didn’t like the way his job was changing. The plan was to have six months off then try to find something with less pressure. Then Covid hit and everyone went into lockdown.   

At the start of 2022, I noticed Ian was slowing down and seemed out of sorts. He was walking much more slowly and becoming overly anxious about things. He was also becoming weaker and losing weight, even though his eating habits and exercise routines hadn’t changed. He struggled to play bowls – something that he had always loved to do – and as a result he was asked to stop playing competitively. Having that taken away had such an effect on him, and he became very withdrawn. 

I requested a GP appointment for Ian in June 2022. We were offered a telephone consultation and Ian was diagnosed with depression. The GP prescribed antidepressants but they made no difference. We arranged several follow-up appointments, but each time, the doctor assured us that it was depression.  

In March 2023, after no improvement, I requested a second opinion, and at that appointment Ian was given a suggested diagnosis of Parkinson’s. 

A follow-up appointment confirmed young onset dementia

The GP requested an immediate referral to a consultant and an urgent MRI scan. We were told there was an eight-week wait, but we heard nothing. When after three months I chased it up, I was told Ian’s referral had been downgraded to non-urgent, and the MRI request cancelled.  

Our GP re-requested the MRI and suggested we see a consultant neurologist privately so that if Ian did have Parkinson’s, he could start treatment without delay. The consultant neurologist confirmed that Ian did have significant signs and symptoms of Parkinson’s, with a reduction in mobility and motor coordination, and immediately prescribed Parkinson’s medication. 

When we finally had our NHS appointment in September 2023, the Parkinson’s consultant increased Ian’s medication, identified cognitive concerns and requested a range of tests. By that point, Ian was unable to cut up food, do up zips or buttons or operate household devices like the TV or cooker. He had lost over three stone in weight that year. 

A follow-up appointment with the Parkinson’s consultant in February 2024 confirmed rapidly progressive Parkinsonism and young onset dementia. Ian was 64 at the time.  

Ian’s decline was so rapid

The delay in the diagnosis, the lack of information, the cancelled appointments and scans had all made this an incredibly stressful period for the family. Our children, who were in their 20s, both struggled with feelings of guilt because they were living away from home at such a difficult time. If I got upset with the enormity of what we were facing, Ian would get really distressed because he felt he was responsible. It was an impossible situation to deal with. 

Ian began to struggle to follow conversations and became reluctant to engage with anyone outside the family. He initially didn’t want anyone to know about his diagnosis, so we became very isolated from friends and the wider family. We had no support, and no idea how to manage day to day.   

Ian’s decline was so rapid. He was diagnosed in February 2024, and by that April, he was confused about who I was. He thought his wife had left him, and I’d been brought in as carer. He lost all his confidence and wouldn’t leave the house on his own, even to walk the dog.  

I was trying to keep my job going during this time; fortunately, my employer, Aviva, has been incredibly supportive and allowed me to work from home, so Ian was never left alone. I also arranged a ‘sitting service’ for a few days a week, where people would come in and take Ian out for a walk or a coffee to break up his day while I worked.  

I felt totally out of control

As the year progressed, Ian became very disorientated – not recognising our family home and becoming so confused. He became uncomfortable sharing a room with me as he thought our children would think badly of him, so I often moved to the spare room to avoid distressing him further.  

I was referred to our dementia specialist Admiral Nurse Rachel last June. At the beginning, I was an emotional mess on the phone. It felt like I was trying to climb a massive mountain, and that everything was slipping away from me. I felt totally out of control, but Rachel’s practical and specialist advice has been invaluable. She is also a brilliant emotional support and always there for me when I need her. 

Rachel helped me to focus on one hurdle at a time. I wasn’t sleeping properly when Ian and I were still sharing a room. She reminded me that I needed to be well rested to be able to care for Ian the following day and suggested that I permanently moved bedrooms. I did, and this really helped me to feel stronger and more able to care for Ian.  

My Admiral Nurse helped me to cope with the guilt

By October, I finally accepted that Ian needed far more support than I could give. I arranged for carers to come in to help in the mornings, but this really didn’t work for us. Ian felt hurried and confused by the carer turning up seemingly out of the blue, and he became very distressed. I had no idea what to do to help him.  

I was on the edge of falling apart completely. I couldn’t keep going. 

I agreed to take Ian for an assessment at a local care home for respite care. It was absolutely heartbreaking. I felt that I had failed him and let him down by not being strong enough to care for him at home. But I also knew it was the best thing for him and that he would get the care he needed and deserved. Rachel was there every step of the way, reminding me that I had done my absolute best for Ian.  

When Ian moved to the care home permanently, Rachel gave us some tips that I would never have thought of. We have a dog at home, so she suggested that I buy a similar-looking toy dog that Ian could take with him to make him feel more comfortable. She also suggested that we put a photo album in his room with a collection of photos from throughout his life. She said this would be a great way for the carers to get to know Ian and to initiate conversations with him. 

As soon as Ian moved into care, he remembered who I was again! He became far less stressed and settled very quickly. I was able to take a step back, knowing that he was getting the professional support he deserved. I was finally able to start putting myself back together again. 

Rachel has been a massive support

Within six months, as Ian’s dementia progressed, I was advised to move him into a nursing home as they would be better able to meet his needs than his original care home. The speed of this came as shock to me, but Rachel was there to explain why this was necessary for Ian and gave me the reassurance I needed. Ian’s nursing home is a wonderful place and will be his ‘forever home’. It organises events and days out that I can go on too, which means we spend real quality time together.  

Rachel has been such a support, both practically and emotionally. She has a very calm and practical approach which is absolutely what I need. I feel like we’ve been through quite a journey together, and I know she will be there whenever I need her.