There’s no easy answer to that question. All I can tell you is there will come a time when you will know you have to make a tough choice. Your head will know what’s right, even if your heart doesn’t want to accept it. By Christina Neal
In the earlier stages of a person’s dementia diagnosis, they may be able to live on their own at home fairly independently, with occasional help and support from family, friends and carers. As the disease progresses, their needs will increase and they will require more support.
For five years after her diagnosis, my late mother Hazel was fine at home with occasional help. As her memory deteriorated and she became more confused, I increased the level of care provided. There were good days and bad days, but it mostly worked. Then one day everything changed. It’s usually a certain day or a defining moment where you realise that things can’t continue in the same way for much longer. As much as you try to make things work and plan for all eventualities, sometimes you have to accept in the inevitable. In mum’s case, there were two defining moments – the first occasion illustrated to me the extent of her confusion. The second made me realise it was unsafe for her to live alone.
The first time, mum called me and said there were people in her living room standing around chatting. She hadn’t invited them in and they wouldn’t leave. I soon realised what was going on. Mum was watching TV and there was a scene at a party where people were laughing and drinking. She had confused TV characters with real people. As far as she was concerned, those characters were in her living room, drinking and talking to each other while ignoring her requests to leave. I told mum I’d get them to leave immediately and asked her to hang up the phone. I then called her neighbour and asked him to go over and turn off the TV. He obliged and made mum a cup of tea while I called her back and reassured her that the ‘uninvited guests’ had gone and wouldn’t be returning.
On the second occasion, things were more serious. A neighbour rang me and said mum had been found outside the house at 10pm in December. She was locked out, without a coat. She couldn’t remember why she was outside or where she lived. That was the moment I decided that mum needed 24-hour care for her own safety. Fortunately, I’d already looked into care homes and done my research several months beforehand.
If you feel that a loved one is nearing the stage of needing 24-hour care, don’t leave it too long to do your homework. Start looking at care homes now. View several of them and see how staff interact with existing residents. Do they treat them respectfully? Ask lots of questions. Alzheimer’s Society has a good guide to choosing a care home and key questions to ask on its website, which helped me a great deal. Visit the Care Quality Commission’s website and make sure the home you have in mind has a good rating. Anything less than a tick in every box was a no-go for me.
You might feel guilty making this decision. You may feel it’s not your decision to make. But let me ask you one thing. If the person continues to live alone, will they be safe? Will they be at risk? I felt guilty. But I decided I had a duty to keep mum safe. It took her about three months to settle into her new environment but she made friends, felt safe and received excellent care. I got to visit her daily. We spent quality time together. The last few years of her life involved us enjoying each other’s company more than ever before, because she was safe and I knew it she was fine. Do your homework. Think it through carefully. Then make your decision safe in the knowledge that you’re doing the best you can under the circumstances.
Making the decision for my late Dad to go into a care home was one of the most heart-breaking things we as a family had to do along the dementia road. My Mum was doing an amazing job of looking after him at home, helped by professional repite care, and me and my brother when we could, but she was exhausted, he was very confused, and and we decided a residential care home would be best. It was very difficult seeing him go in there, and equally upsetting visiting him (I often lost control of my emotions, while Mum was I believably stomg). However I do believ it was for the best, and he was well cared-for during the last year of his life.