In the months since my last post, Dee has entered a deeper phase of her illness.
She is going to bed earlier, a result of finding it more exhausting to try and keep up with every day conversation. She forgets who she's talking to, who she lives with, and has started a routine of calling me daily at round about the same time to find out when she will next see me, even if I'm seeing her later that day. (I found out recently this is called 'sundowning', a period of uncertainty or confusion that many Alzheimers and Dementia sufferers experience at dawn or dusk.) I quite like these conversations though. She's always so charming and sweet. It seems to be an attempt by Dee to try and take control in some way.
More recently, she's been having these episodes of complete and total confusion and paranoia.
This episode I'm about to expand on was very difficult for all involved. It was the first of its kind for us and for Dee, and although books and various medical studies can help you feel prepared for these moments in a loved one's journey through Alzheimers, when they become a reality, it's quite difficult to handle.
It was a Saturday night. Dee had gone to the Cotswolds with Father, her sister and brother-in-law for a weekend in the country. She has been to the cottage before many times with various family members. The place is homely, comforting, familiar, set on a lake in the middle of beautiful countryside. Up until this point, there had been no real issues with taking Dee away from the family home for periods of time.
She'd had a pleasant day wandering around the local town before heading to the pub to watch a game of rugby with Father. They returned to the house and Dee went for a lie down.
It was at this point, she began to find things a bit strange. She had a photo frame and clock by her bed that comes with her whenever she's away to keep her settled and allow her to readjust, but this seemed to be what made the confusion start.
It began with questions. She was asking where all her stuff was, where she was, who Father was. When she was told the answers to each question, she didn't believe them. She thought she was in her own home, something in hindsight I think came from Dee's sense of familiarity with a place she'd been before, coupled with the understanding from others that she was getting confused.
The situation then escalated rapidly. She began to question everything that was being said to her, demanding to speak to her best friend and me for help and confirmation of her thoughts. I received a phonecall from Father, who explained that Dee was confused and wanted to speak to a familiar voice.
Dee was really upset. Her words were muddled, she was scared, confused, and unable to rationalise anything that was being said to her. She believed everyone was trying to kidnap her and take her into a home. Father decided the best thing to do would be to get her in the car and take her home, but even this proved a struggle.
She thought they were getting her in the car to take her away, so much so she shouted 'if you don't see me again call the police!' down the phone. At the time this was quite a harrowing thing to hear your Mum shout, but now thinking back on it that line makes me laugh. Clearly she'd been watching too many police dramas on ITV3. She always had the ability to be dramatic, something I hate to admit I've inherited!
Anyway, being in the car immediately placated her. She quickly calmed down, returning to a more manageable state. By the time she'd got home, on first impressions she seemed 'normal' again. But she was talking in a manic and distorted manner, pacing the room and doing the same familiar things in a particular order.
In her mind, she'd already forgotten the whole thing. (This was probably the first time I've been grateful for the bloody disease.) If only the same could be said for the rest of us.
This was the start of her deeper descent and although the more regular episodes of confusion are less extreme, they are becoming exactly that - more regular. But with each episode, we are getting better at coping and calming Dee down. But one day, these periods of complete confusion will become the norm, and her moments of clarity and understanding will become the episodes.
