We work with a plethora of carers, in all circumstances. Each case is so individual, which is why the time is taken to listen to the carer to really understand how we can help.
Jan, 71, is a carer for her husband Steven, who is 83 years old and living with Dementia and her son, 36, with Learning Disabilities. Although both are now in supported living Jan still has caring responsibilities.
“When Steven went into the Care Home, I felt I had lost my right to count myself as one of the group as I had passed the responsibility to someone else, which caused me a certain amount of relief but also guilt.”
Jan still attends monthly meetings at Sage House and feels supported, despite Steven now living in a Care Home she feels that by sharing her experiences she can help other carers which despite feeling guilt, makes it worthwhile.
Does your caring role differ from the care you give to your son and the care for your husband?
“Both roles have some similarities around the tasks undertaken, but I have been handling caring for my son all of his life. The early diagnosis of dementia for my husband, was not a shock as I had seen the warning signs. However, had I known the depth and complexity of his journey and the change to his behaviour I would have been more concerned. I didn’t think I would ever be concerned for my own safety.“
“Looking back, it is difficult to identify when Steven started to change.
The last thing you are suspecting is the onset of dementia if you haven’t had any real experience before.
2016 is a date that my sister-in-law and I reflect on as being a significant change in Steven’s demeanour. Around this time, he became obsessed with his health he was backwards and forwards to his GP.
Steven had had a very successful career and had always been somewhat of a ‘Marmite’ personality, so it was difficult to ascertain where his ‘strong’ personality ended, and ‘Alzheimer’s’ began.
By the middle of 2018 we were firmly on the radar as regards memory assessment and the GP referred Steven. All the obvious signs were there by then – losing things and blaming anyone for taking or stealing what he couldn’t find. Intolerance to change, inability to follow anything on the TV, having the news on the TV all the time but being unable to tell you what was in the news, losing interest in everything, increasingly only wanting to eat cake and ice cream, inability to problem solve.
I was becoming increasingly stressed, thankfully I have good family support, but Steven didn’t really want them around, my added problem was that Steven was still driving his car! In itself that was about to become a huge issue but initially I have to say that I was relieved when I got some brief respite if he went out in his car – even trips to the shops with a simple instruction became impossible. Small instances like this are a learning curve on the journey of dementia which carers don’t necessarily recognise as progression.
All the things that Steven would have been able to do standing on his head I began to realise that he could no longer do them, and I had to be careful not to set him up to fail at tasks as that only made him stressed and anxious.
By February 2019 Steven was given his diagnosis of dementia, we were given lots of paperwork, I don’t remember everything, I suppose I thought that we had a diagnosis and a prescription, and I could probably handle things. The thing I have learnt is that problems will be different but one thing that is certain, is things will not remain the same!
By 2020 Covid hit, and Steven didn’t understand what that meant, we had taken our caravan to Devon for the season and then the country was locked down so the farmer said we could stay where we were. Steven continued to drive backwards and forwards to Devon which sounds quite a feat but in reality, he just got in the car and drove where the satnav told him to go. When he arrived back in Sussex, he thought he had been there for weeks so got straight back in the car and returned to Devon, at this point the Dementia Crisis Team were called in.
I was nearly on my knees at this point and was investigating with some local care homes for Steven to go for respite. Once we had arranged for Steven to go into respite, I realised how vulnerable I had become. I was fearful for my own safety in our own home. The person I was living with wasn’t the one I recognised anymore.
The care needs had changed so drastically I could no longer cope. I was reassured that this is natural and understandable and that if I felt unable to continue to care safely, I could say so. I truly felt that I had reached my limit, emotionally and physically. I planned for Steven to move into the care home. He could no longer take care of himself and couldn’t be left alone for even a short amount of time. “
What impact has your caring role had on your life?
“Had I known how much of an impact the diagnosis was going to impact my life, I may have sought out support earlier. I cannot express how much of an impact there has been on my life. Even before the situation with the Court of Protection, I was in fear of my own safety and caring for a man that only resembled my husband in looks. His whole personality changed into someone I didn’t recognise. “
“I do believe that Carers Support have a very special contribution to offer because it is the only organisation which is dedicated to the Carer not the cared for and it offers a safe space for carers to offload.”