A person with dementia has an effect like a stone thrown into a pond, with its ripples all the people affected. The carer has to deal with them all. Here are a couple of examples:
I would visit at a specific time to take my mother a short distance to church, but not having a good grasp of time, she would sometimes think I was late and walk to the church on her own. She told me that outside her flat there should be a plaque saying: ‘Mrs Clarke waited here for her daughter – who was late!’ Several parishioners would see her arrive and look for me. If my mother was alone, they would worry, as they had seen her turn the wrong way to walk home before. So they would take it upon themselves to escort her in the right direction, or patiently walk her home.
Attending a regular Womens League meeting seemed a good idea. But when the lady collecting her rang the front door bell, my mother was disorientated and pulled the monitored ‘CareLine’ alarm cord (which she sometimes mistook for the light cord). This started a very loud sound, with an invisible voice calling her name through the loud speaker. In a state of confusion and panic, she then phoned me at work. In the background, I could hear the alarm, CareLine trying to speak to her, and her lift still buzzing at the front door. I tried to get my mother to talk to the CareLine voice, but she dropped and left the phone dangling… I was helpless and stressed on the other end of the phone and had to end the call. As her nominated contact, I then received a call from CareLine and tried to explain to them what I thought had happened. However, because there had been no answer from the flat and the warden was away, they had no choice but to send an ambulance to check the situation for themselves. My mother had eventually found the lady who had come to collect her and they both left for the meeting. They were late. As this lady was leading the meeting, she found the experience stressful and understandably declined to pick up my mother in the future. My mother was totally oblivious to this earthquake this had caused.
Trying to pick up the pieces from these experiences is emotional and difficult. Working full-time means that you are not always around to do the ‘nannying’, so you just end up picking up all the pieces afterwards.