Hi! I'm Kirsty.
Dad was diagnosed about 7 years ago. It's been a rollercoaster. Mum has done all of his caring , which is ironic as he had been her carer for years as she's almost crippled with osteo and rheumatoid arthritis. Mum had her first proper break in mid June, while I stayed with dad to look after him. He could walk from bedroom to front room, and use the toilet, although urine incontinent, feed himself. He had horrible hallucinations,made inappropriate sexual comments, be grumpy and uncooperative. He was never nasty or aggressive.
At this point, there were still flashes of 'my dad' I became concerned as he began to slur his words, and had 'left the room' to a greater extent than usual. He looked similar to how he did after his stroke. He was admitted to hospital , much to his distress and disgust.
After 6 weeks he came home, no diagnosis, and a care package was in place. The care company had been told he was bed bound, although there was a hoist for him.
For the next 6 weeks he suffered with vomitting and diarrhoea almost daily. He was eating less than a toddler, and having to be fed. He was also apart from mum at night as the hoist was too wide for the bedroom door, and we didn't want him isolated in a bedroom all day.
Even so, I still got glimpses of 'my dad'.
My mum was insistent he could still stand. She only agreed to carers after lots of conversations with me, my sister and his doctors. Even so it was done with great reluctance. She got him standing, then fought for home physio. After one physio session, a Sara Stedy was delivered. No hoist, back to bed with mum, back into the wet room for showers!
The next day, hospitalised again for low blood pressure, kept in for low potassium. Was nil by mouth, all medication except Parkinson's patches stopped. On Thursday we were told if his potassium level didn't start to rise within 24 hours he wouldn't survive long. Mum wanted him home, but was told it wasn't possible as he had to have his heart monitored 24/7. They didn't rise.
Today I've been with him. He's now allowed water or apple juice. They've given him glucose and potassium drips, but none of his regular medication. I'm really confused as to whether he is near the end or not. He rallied today, I washed his hair and tried to respond to his unique conversation style !
The hospital is being uncooperative when questioned. I don't understand why they're trying again to raise his potassium level , when it's been unsuccessful for 10 days. He is having distressing and disturbing hallucinations.
I just wondered if anyone had experienced this, or if anyone could shed some light on the hospital's thinking.
Thank you so much, sorry it's so rambling
Kirsty x
Dad was diagnosed about 7 years ago. It's been a rollercoaster. Mum has done all of his caring , which is ironic as he had been her carer for years as she's almost crippled with osteo and rheumatoid arthritis. Mum had her first proper break in mid June, while I stayed with dad to look after him. He could walk from bedroom to front room, and use the toilet, although urine incontinent, feed himself. He had horrible hallucinations,made inappropriate sexual comments, be grumpy and uncooperative. He was never nasty or aggressive.
At this point, there were still flashes of 'my dad' I became concerned as he began to slur his words, and had 'left the room' to a greater extent than usual. He looked similar to how he did after his stroke. He was admitted to hospital , much to his distress and disgust.
After 6 weeks he came home, no diagnosis, and a care package was in place. The care company had been told he was bed bound, although there was a hoist for him.
For the next 6 weeks he suffered with vomitting and diarrhoea almost daily. He was eating less than a toddler, and having to be fed. He was also apart from mum at night as the hoist was too wide for the bedroom door, and we didn't want him isolated in a bedroom all day.
Even so, I still got glimpses of 'my dad'.
My mum was insistent he could still stand. She only agreed to carers after lots of conversations with me, my sister and his doctors. Even so it was done with great reluctance. She got him standing, then fought for home physio. After one physio session, a Sara Stedy was delivered. No hoist, back to bed with mum, back into the wet room for showers!
The next day, hospitalised again for low blood pressure, kept in for low potassium. Was nil by mouth, all medication except Parkinson's patches stopped. On Thursday we were told if his potassium level didn't start to rise within 24 hours he wouldn't survive long. Mum wanted him home, but was told it wasn't possible as he had to have his heart monitored 24/7. They didn't rise.
Today I've been with him. He's now allowed water or apple juice. They've given him glucose and potassium drips, but none of his regular medication. I'm really confused as to whether he is near the end or not. He rallied today, I washed his hair and tried to respond to his unique conversation style !
The hospital is being uncooperative when questioned. I don't understand why they're trying again to raise his potassium level , when it's been unsuccessful for 10 days. He is having distressing and disturbing hallucinations.
I just wondered if anyone had experienced this, or if anyone could shed some light on the hospital's thinking.
Thank you so much, sorry it's so rambling
Kirsty x
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