palliative care for my dad

[Just Jane]

Hi everyone,

not posted on here for a while, my dad been in and out of hospital 5 times this year for different health conditions and now he as liver disease.

my dad had lewy body dementia and Parkinson's my dad got told he had this in the first wave of lockdown, and how in 2021 we are going to be having a palliative care nurse come and talk to us tomorrow, my dad gone down hill fast he is spending alot time in bed.

The Parkinson's meds are not working on him as it brings out his mental health side. I can't get my head round how my dad has gone from being confused and upset last year to not able to understand the people around him and being in bed most of the day sleeping and also rambling at night, how progressive is Lewy body dementia?

 

[Izzy]

I’m so sorry to read about your dad @Just Jane. I’ve no personal experience of Lewy Body Dementia but I wondered if this factsheet would be of any help -

Symptoms of dementia with Lewy bodies (DLB)

Symptoms of DLB include having difficulties staying focused, experiencing delusions, and having problems with movement and sleep.

www.alzheimers.org.uk

 

[canary]

Hi @Just Jane
Im sorry to hear about your dad. Every person with dementia (of any type) progresses at their own speed - Im afraid that it is impossible to know how quickly, or slowly, someone will progress. And it can change over time too - sometimes they can stay at the same level for quite a long time, and at other times they can progress very quickly. Six months can be a very long time in dementiaworld. My mum went, in six months, from living independently and me not even realising that she had dementia, through to her accusing me of stealing from her and abusing her, so she wouldnt let me in the house, stopping doing housework, not washing and changing her clothes, not being able to cook anything and finally going out at night just in her nightwear and knocking on random peoples doors at silly o'clock in the morning. When she ended up in hospital she was completely paranoid and delusional, malnourished and dehydrated (because she couldnt even make herself a cup of tea), beginning to become incontinent and had to move to a care home. All within six months.

Yes, it is hard to get your head round - it can happen and when it does it can be scary
xx

 

[Banjomansmate]

LBD can progress quite quickly, especially near the end. The Banjoman was walking and talking when admitted into residential care in February 2019 and died a curled up skeleton in the October. I was just thankful it didn’t drag on for longer. He had been diagnosed two years earlier and I had been warned by a Dr. friend that deterioration could be rapid. Rivastigmine patches may have helped hold things at bay for a while but I think the downhill progress was fairly consistent.