Monday

I got asked the other day whether it was difficult seeing Mum when she’s totally unresponsive. To be perfectly honest, they’re the easiest visits. For me at least. It’s comforting to see her so peaceful.

The phases she’ll go through in the next few days as she wakes up again aren’t at all easy. The next phase will be the one where she’s awake enough to know where she is but not strong enough to move. That makes her painfully aware of how poorly she is and she’ll be feeling very sorry for herself. Sometimes, she’ll be a bit weepy. If the cycle is a particularly tough one for her for any reason then this will be the day that she says “If I could die, I would”.

The day after that, she’ll be quite calm and can be reasonably lucid. I’m guessing that that’s because she’s had a day or so where she’s been able to eat something.

After that, her level of animation increases and the hallucinations get worse until on Day 6 or 7 of her cycle she’ll hit the Peak Active Mum phase and then she’ll crash back down to Sleepy Mum again.

On the way up to Peak Active Mum she can still be quite lucid though. All the staff tell me that if she’s asked a direct question then she can give a clear answer. But those who spend any length of time with her know that if she gets to lead a conversation then it will get very surreal very quickly. My problem is that I ran out of things to talk about months ago so it’s difficult to lead the conversation for an hour or more every day. It’s why I read to her.

My world revolves around failing to keep up with domestic tasks, rehabilitating a dog that’s been through a rescue several times, supporting an ailing father-in-law, visiting Mum and writing this. My social life is limited to the staff and residents at The Home.

Consequently, if she’s not interested in being read to, I’m following wherever her reality takes us. Her ability to speak clearly has declined so it’s not always easy to understand what she’s saying so I have to hazard a guess at what she means and make the appropriate response. I will not be drawn into saying whether close to 40 years of marriage has given me any skills appropriate to making the right response when you can’t hear or can’t understand what’s been said. I just do my best not to challenge her reality. Perhaps I’m being overly sensitive but often my nerves are in tatters as I do my best not to give the wrong answer which would cause enormous upset. Giving no answer at all is just as bad. What she’s seeing is extremely vivid and totally real and she doesn’t need to think I’m thinking she’s completely lost the plot. It leaves me acting a part in an improv skit where I can’t see who the Other People are, what they’re doing and can’t hear what they’re saying. I have to take my cues from Mum and I can’t always understand what she’s saying either. It’s exhausting.

But today is a quiet day. Mum’s barely awake. She definitely knew someone was there and I’m reasonably certain she knew it was me. She was able to lift her head so that I could adjust her pillows but that was about it. I was able to ask her whether she was comfortable and warm enough and whether she wanted the window closed or a drink but I had to get really, really close in order to be able to tell whether she was nodding or shaking her head. Responding to just those few questions was all she could manage and within minutes she was completely unresponsive.

The highlight of the visit happened before I’d even got in the front door. A lady in scrubs was leaving and said…

“Do you mind if I say I really like your kilt? Not everyone can carry one off like that. It really suits you!”.

That made my day. 

Author’s Note

My Mum is in a nursing home in a small village in the Thames Valley. The photo is not of the home. I used an AI image generator to give the reader some idea of the home she’s in.

All, some or maybe even none (you’ll never know!) of the names have been changed to protect privacy and hide real identities. If you think you recognise someone then let me know and I’ll edit the post or remove it entirely