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Original poster

Need some urgent help and advice re parkinsons/respite/carers

19 replies

mosschops30 · 03/10/2006 14:25

My step father has parkinsons and has been getting increasinglky worse but is totally in denial that he has any problems.

After a weekend away, my mum has just phoned me in tears saying she cant cope anymore. I need to get her some help but dont know where to start. I know someone has given me advice on here before about respite and carers, just wondered if anyone could help

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KellyKrueger1978 · 03/10/2006 14:27

I would call help the aged and the social services who will be able to do an eligibilty assessment.
very for your family taht things are gettign so difficult.

cece · 03/10/2006 14:28

Hi my fil and mil are in the same situation. Have they got a social worker yet? There are charities that help but tbh it is all a bit grim as regards carers and help.

My fil goes to day centres 3 times a week. Not sure how mil organised this but I now it was quite a battle and also a real fight to maintain this level of help.

I think a lot depends on how much money they have. So think you get more help if you don't have any iyswim. Otherwise you have to pay for it yourself....

cece · 03/10/2006 14:28

What stage is he at - is he violent towards her?

lemonaid · 03/10/2006 14:29

My dad had Parkinsons and spends a week in the local hospice a couple of times a year so that my mother can get away on her own. Yours might do something similar?

lemonaid · 03/10/2006 14:30

has, not had.

shimmy21 · 03/10/2006 14:30

Is there a carers support service near you? They'd be best placed to advise on services in your area or go to SS. If your stepdad is eligible for Attendance Allowance or DLA (which he will be) then your mum is entitled to a carers assessment for her own needs which can allocate respite care etc. She can have this independently from your dad.

foxinsocks · 03/10/2006 14:31

my gran refuses help as well grrrr

The Parkinsons Society (think this is what they are called) have been very good. Also, there should be a Parkinson's nurse based at the hospital where your step-father sees his consultant - probably one of the first steps is to speak to the GP and tell the GP that they cannot cope. I know the Parkinson's nurse used to visit my gran but I'm not sure what they do now.

cece · 03/10/2006 14:32

My fil cannot be left alone and he has to go into repsite 2 weeks out of every 8 weeks for the sake of my mil's health. However, she has to pay for this out of her own money! It is written into his careplan but then they refuse to pay! I find it amazing that htey can do this!

Got to go on school run will be back later..

Original poster
mosschops30 · 03/10/2006 14:32

Unfortunately they do have money. He's not violent but can be nasty, disorientated, loses things, wont ever leave my mother alone (she cant go anywhere without him, he wont go out without her and she feels suffocated), he has had 2 accidents in the car (i dont think he should be driving).

Just want to know really where i can get hold of a pd nurse specialist or information on some respite care for my mother, she cant cope and I am worried she will do something stupid if this goes on

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cece · 03/10/2006 14:34

she also gets once a week a carer to come in overnight (he doesn't sleep at night....) that is paid for by a charity (Ithink?) called Sufflok Carers. This is to enable her to get one night's sleep a week.

foxinsocks · 03/10/2006 14:34

actually, I see the Parkinson's nurse came through that society I linked to

I know they were told they were eligible to have someone come round and help clean (I think they would have to pay but it was very cheap). They were told to oragnise this through the council. They also had a social services assessment done but no extra help came from that.

It might be worth looking up their local council online and giving them a call to see what is available in their area.

cece · 03/10/2006 14:35

My MIL has built up a little 'crew' of two or three carers that she uses regualrly and pays for hewrself. Thinks she found them through word of mouth and personal recommendations...

foxinsocks · 03/10/2006 14:35

if you click on that link and then 'Support in your area' it has a number you can call to see if they have a nurse in his area

HRHQueenOfQuotes · 03/10/2006 14:39

Best bet is to contact the Parkinsons's disease Society to see if there's a nurse in your area. then try and see if you can get one to SS to get some carers to come in during the week - that's what my mum has - and it's eased the pressure on my Dad a LOT.

Also he shouldn't be driving - my mum had to give up her provisional licence when she was diagnosed.

Original poster
mosschops30 · 03/10/2006 14:41

thanks foxinsocks have just looked at the link and will try number (it is engaged at present). Mum doesnt need anyone to do the cleaning or anything like that (she's only 60, he's 75), think they just need more information, he needs some help accepting the problems, and maybe some time away for him so my mum can have a rest because its relentless. I go for the odd weekend and it drives me nuts

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HRHQueenOfQuotes · 03/10/2006 14:44

moss - has your mum contacted the PDS (parkinsons disease society) at all. They offer lots of help and advice for carers (ie your mum) as well as sufferers, including how to help people who won't accept that they have problems deal with it. Also worth seeing if there's a local group which has meetings and they could attend.

lemonaid · 03/10/2006 15:01

HRH They don't automatically take away your licence for Parkinson's (not sure what the story was with your mother). My dad's still driving occasionally and he's been diagnosed for eight or nine years now he contacted the DVLA when he was diagnosed and was told it was fine to keep driving for the time being. I don't think he should be, but that's another issue.

cece · 03/10/2006 16:01

My FIL gave up his license voluntarily as he felt he wasn't safe to drive.

If they have the money she could get social services to provide a list of places that provide respite for people with Parkinsons. You usually have to book it way in advance though unless there is an emergency.

Has he gat a care plan?

Original poster
mosschops30 · 04/10/2006 14:25

thank you all for your advice yesterday. I spoke to the PDS and they put me onto a local day hospital and I spoke to the manager who gave me lots of info and said that all he needs is a gp referral so my mum will take him to the gp. They can then twiddle with the meds and hopefully get him a bit better.
The PDS also recommended my mu going to the group even if dad wont go, although they said a lot of people feel like that initially.

On the driving side of things I dont know what to say, he is obviously not safe and I wont allow him to take the children in the car, but i cant protect all those children who are out there and that worries me. He knows how i feel so if i reported him to the dvla he would know it was me, however he wont listen and thinks he is fine driving

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