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I'm new to this site - just want to introduce myself


Registered User
Apr 13, 2015
Hitchin, Hertfordshire
My sister and I have been caring for our parents between us for the past eighteen months. Mum suffers with vascular dementia but other than that is physically fit and healthy. Dad however has multiple problems - Prostate Cancer, Parkinsons Disease, Pagetts Disease and Dementia with Lewy Bodies. Mums deterioration has been slow - she was first diagnosed seven years ago and apart from having no short term memory at all, she knows who everyone is and functions quite well as long as she feels safe and secure. Dad used to be sole carer for mum - until he suddenly deteriorated in November 2013. He went downhill very rapidly and due to numerous NHS blunders and incompetence it took us until April 2014 to get everything diagnosed accurately. We realised that they could no longer care for themselves, so my sister who is divorced and does not have children decided to rent her house out and moved in with them. They now need constant care as dad is really wobbly on his feet and falls if left on his own. I decided to give up working full time so that I could do my share of the caring and things are working out OK - just! It has been a total emotional roller coaster and dealing with all the everyday practical things and coping with the way that things can change in a moment has been very difficult for us to come to terms with. We seem to spend hours and hours discussing the best way forward and assessing risks and trying to do things in a better way to give them both the best quality of life we can manage. Dad's mobility is now very bad and he is always at risk of falling and has had several quite bad falls that have resulted in cracked and bruised ribs and the odd black eye. His mental state is now declining rapidly and his periods of total confusion are happening more frequently and for longer periods of time. He 'sundowns' almost every day now at around 5.00pm - and this can last for hours on a bad day. He starts shouting at us, mum and the tv because we can't understand what he is experiencing in his head at the time. This can sometimes get quite distressing. His behaviour can also be challenging sometimes - but he has never been violent towards us. Yesterday we took them out for lunch and for the first time ever - he forgot how to eat. He just didn't know what to do with his knife and fork and we had to feed him and had to keep reminding him how to chew and swallow his food. We both found this very upsetting. I'm really interested to find out other people's experiences in caring for someone with Parkinsons with Lewy Bodies dementia. Our experiences with the NHS and Social Services has been very bad and we feel quite isolated dealing with the many problems we encounter along the way. The best help we've had has been from the Occupational Therapy team and Alzheimer Society volunteers. So if anyone out there has any tips that can help us through, we would be very grateful. :)


Registered User
Aug 30, 2013
The only tip I can give, is this, Get a "hospital" type beds for both of them. The type that will go right down to floor level (to prevent injury when falling out of bed, the bed is lowered right down before the patient is left.) and right up to a comfortable level for yourself to work at. (just making the bed up or full bed-bath/turning the patient.)
Look after yourselves, first and foremost! You ain't much use, to man nor beast, if you can't stand up because of a bad back caused by trying to lift badly.