Anne: "The hardest decision I ever had to make"
After years of being stretched to the limit juggling work with caring for her mum, Anne knew that the situation could not continue as her mum’s dementia progressed.
Mum was born in 1927 and was a true Cockney. She had me late in life and always said I was her greatest achievement. As an only child, I spent a great deal of time with her and we were extremely close. Whatever I did or wherever I was, she was in my corner.
I never thought of myself as a carer, it sort of crept up on me. At the start, mum’s care needs were mainly physical but then she was diagnosed with dementia too. The saddest aspect for me was that it robbed her of her personality. Never again will I experience that unconditional love.
Once I’d begun to really struggle, I started looking into care homes. Mum kept saying she didn’t want to go and no matter how unwell she got, she still had that strong-minded streak.
I had a 40 to 50 hour working week on top of caring, which became more intense as mum’s dementia progressed. Paid care workers visited mum during the day but only spent 20 minutes at a time and often called me at work. All my weekends and holidays were spent with mum. I moved closer so I could dash over in the night. I was living in a strange parallel universe, with work conference calls in hospital carparks and food shopping online, on my commute. I never felt part of the normal world.
For a year and a half I was stretched to my limit. I lived from phone call to phone call and still jump now when I hear the phone ring. When social services would come, mum would insist she was fine. I made sure I was there, often at short notice, to tell them what was really going on. It got to the point where she couldn’t answer the phone – she thought the ringing was coming from her TV remote.
Frequently, ambulances had to be called out in an emergency to take mum to hospital. On one occasion, she introduced the doctor as her nephew. But they still decided she could make her own decisions regarding care. I felt incredibly guilty but also very desperate. I said I was withdrawing all support from mum and would hold the hospital responsible if anything should happen. I wouldn’t have gone through with it but it caused them to reassess and agree she needed nursing care. I’d already researched homes near me, visited many of them and knew which one I wanted mum to be in. I’d even hang around care home car parks at different times of day, getting honest reviews from visiting family and friends.
From hospital mum went straight to the nursing home. It was the worst day of my life. There was no harder decision I’ve had to make and I still wasn’t sure if I had made the right choice. The worst thing was that I’d done it behind her back and against her wishes. The first week was the hardest. I left in tears every time.
After a while Mum did settle down even better than I’d hoped. It put my mind at rest knowing she was getting her meals and medication, and being cared for by people who got proper time away. I still visited her every day and managed her care with the nursing home.
It’s been over a year since mum passed away but I think of her every day. Even towards the very end, that love remained. Once I asked her “Do you know who I am?” and she replied “No, but I know you love me”.
I still feel guilty. I don’t know what mum would have told me to do if she really knew. Reaching out to people on the Carers UK forum who had been through a similar situation made me feel less isolated. It was my link to the outside world, and a place where I could be honest and open. It helped me accept that guilt always comes with love.
As a piece of practical advice, it’s better to be prepared and to do some research about different options, even if you’re not sure what route you’ll go down. Then, if circumstances change at least you’ll have that information. I couldn’t have selected the right care home whilst mum was in hospital, in the middle of that stressful time.