Monday, 29 May 2017

Black Sunday

Have to go to work today...and the next 5 days.
Spent a lot of emotional energy yesterday...

We visited the hospital at lunchtime. While he parked the car and went on upstairs, I went to a local cafe to get a choice of coffee or a cocoa, and a nice cake for Okaasan. Try to take her something nice everytime.

A few minutes later I arrived in the ward room. Okaasan was the only patient - the other 3 bed were empty and clean.

And fury was in the air. She was NOT happy - she was angry - at everything we did or said. The fury. The aggression. Anger. Rudeness. Raw emotion sitting in a wheelchair.

DON'T sit there!
Don't move that chair!
Hmm. Coffee? Cocoa? Both.
Don't put your bag there.
Don't use that trash bin.

It's itchy on my back. What's this thing round my body. I want to go to the toilet. What's this. Don't.

Such a change. We'd left her Saturday afternoon all smiley and pleased to have seen us.
And come on Sunday to this.

I got riled up too. I couldn't help it.
Dear Son put a warning hand on my arm....I went to walk around the corridor with my coffee. I Reset and went back. 

DON'T walk around the hospital like that with a coffee cup!
DON'T put the lid there!

It's impossible to fully get over the shock of seeing someone so different. So much anger, where usually there is none. 

I left again. Blood boiling. Went to the toilets downstairs.
Came back.

She was talking about the itchy feeling of the corset and wanting to go to the toilet. Dear Son trying to explain that she couldn't GO to the toilet - she was wearing diapers and a urine tube and bag. Trying. Anger. Wanting to defecate. Badly.

We left her. Hoping that without us sitting by the bedside she would defecate. 

Stood in the rain in the parking area wondering what had hit us. Was she alone in the ward because she'd turned difficult and the nurses had moved other patients? Or was that just a coincidence of hospital admin?

We went to lunch. Tried to Reset. Exhausted. Dear Son had a whole thing about whether he was bike taxi working or not, whether the rain would stop.

One hour later we went back to the hospital.

She was in bed. The anger was gone. Replaced with whimpering sadness and irritation about the itchy feeling.

I'd bought a back scratcher. While DS  paced the room I sat at the bedside and tried to scratch inside the back of the corset. Okaasan endlessly telling me to take it off and check her skin for redmarks. I sat and talked comforting, kind words. On and on....she calmed.
I got one of her magazines and held it over the bed, showing her pictures of old Tokyo - asking her about places in the city. Scratching. Talking. Calming.

It was a relief. She had returned. That other person, the anger person. Gone.
I guess everybody who lives with dementia in the family has this experience? Seeing a whole OTHER side to the person they know? It's amazing. Scary and confusing.

20 minutes later DS wandered off to the toilet. Okaasan heard the word "toilet" and started getting agitated. Flapping her hands on the bed, whimpering...stress building.

I asked the nurses to come and a team of three went into action behind the curtains to help Okaasan. We stood in the corridor and wondered when this will all come right...when will she be able to come home?

She HAS started physical therapy. End of last week. She had talked happily about the nice therapist. Obviously a positive experience. Will she be able to stand and start walking this coming week? 

We left. In the rain. Exhausted by the two hospital visits.
Went home to finish cleaning Okaasan's room and clothes. Watched a video. Ate steak for dinner.

And now a week of work begins.

Ho hum.


  1. I am not surprised. I was expecting something like that. The "Jeckyl and Hyde" encounter. It is very scary and very confusing. Is there any social worker around to help you and DS navigate this period?

    I also noticed you rarely mention doctors. Are you two getting any kind of feedback from them? Is she getting any kind of psychiatric support? A mild anti anxiety medication perhaps?


  2. Scratching, talking, calming. I was soothed just reading those words. Good luck with the week ahead

  3. My parents were taking care of grandma. She was demented to the point of not recognizing them. Although she had better moments... It was extremely difficult. She would come to any visitors and complain to them about my parents, how mean they were to her, and call them "those people". She would also hide food and dirty toilet paper all over the place, and had to be watched while taking meds, so she would actually take it. Took lots of patience and self-care to survive this for about 4 years.

  4. I'm so sorry that you had to experience this side of MIL. Dementia is a sneaky, horrible disease.
    My Dad while in the hospital would call me by my sister's name. He would say I had been to visit and must not care about him. All the while, I had been to the hospital 3 times that day and not my sister.It's a struggle for patient and caregiver. Hang in there. You are a great DIL, who is kind and caring. Will you have daily help when she comes home? Laura