What help is there for Parkinson

Hi Rosemary 

I was a fully healthy 45 year old when my husband and I moved in with my mum to care for her due to her parkinsons.. If you live with someone you do not have to do the physical caring ( showering dressing getting in and out of bed emptying commodes etc) the social worker from adult social services won't even quibble if you say you can't do those things...I said I can cook clean wash iron manage meds etc but hands on won't work as I knew I would be exhausted.. But the social worker explained that they know that the physical side of caring leads to a relationship breakdown . The lines blur and the person who is ill will shout , become short tempered if a family member handles them and they are struggling but if a nurse or care worker does it they control themselves ..so don't worry about wanting a care package .. You can ring adult social services yourself and request to be assessed stating you can't cope...also ask your gp to refer you to have occupational therapist assess your husband ..fantastic they will assess him putting up hand rails grab rails raised toilet seats electronic bath seats even riser recliner chairs ..they are free mostly from Red Cross stores...

now days you will get assessed by adult social services and given a set amount of money a month to buy your husbands care with ..you can choose a care firm and what you need ...

is your husband over 65 if so apply for attendance allowance then you can get carers allowance but to be honest the £50 a week they give you for carers allowance they reduce his attendance allowance by £50 ..so just apply for attendance allowance..and 

when your husband is assessed by adult social services ask to be assessed as a carer and ask for your carers grant which they can award you of up to £300 once a year for a holiday a hobby anything to spend on helping you cope ....

and this is a long haul of an illness its a roller coaster .. With ups and downs but once you have a care package each time your hubby worsens ring adult social services and they will reassess. My mum ended up getting £2000 a month for care ...she had 4 visits a day one at 7.00am to get her out of bed and give her breakfast ..one at 10.00am to bath her and dress her one at 12.00  to give her lunch and one at 7.00pm to dress her for bed and put her to bed ... Then because I couldn't leave her un attended at all ... 9 hours a week to pay someone to sit with her and keep an eye on her so I could go out ... It worked .. And my mum was able to walk with a pusher frame , feed herself , talk etc right up to her death ...

i got this because I said each time she worsened help I can't cope I don't want her in a home .. Homes cost far more than £500 a week ....

hope that helps and see if you can get a Parkinsons nurse to look at his meds ..lots of meds out there ...just need to get the right one...

my mum died of broken hip and being so frail ...so diet and weight loss are key badger the doctor for ensure supliment drinks ..because the parkinsons drugs and constant movement burns calories and weight loss is the killer not parkinsons..so lots of rich fattening foods ..hope that helps 

sally 

I was diagnosed in my early 40's and this January i underwent DBS surgery which is showing great improvements. For me, i declined fairly quickly and everything was trial and error trying to find the right combination of medication which worked. I found once i had come to terms with it exercise played a huge part and regular exercise helped me feel less stiff and llowed me to move around more freely. Things have changed a lot since my operation and im grateful myMeds dropped from 17 each day to less than half.

As sally says the financial support isnt huge but i would recomend speaking with ParkinsonsUK - they were a great help to me and gave me access to a Parkinson's nurse as my area didnt have one. That nurse was like a rock for me..