Return to HDA home page HDA Message Board
HDA About the HDA HDA What is HD HDA Juvenile HD HDA Children & Young People HDA Professionals HDA Resources HDA Research HDA HDA News HDA Events HDA Contact the HDA HDA Home Page

Outside of office hours if you need someone to speak to you can phone the Samaritans on 116 123


Go Back   HDA Message Board > Message Board Categories > General HD topics

General HD topics Open forum for all other issues concerning Huntington’s disease

Reply
 
Thread Tools Display Modes
Old 10-09-13, 02:21 PM   #1
B
Approved Member
 
Join Date: Feb 2012
Posts: 44
Default Respite

Hi there,

Maybe someone on here could help or have some advice for me?

I've been looking after my farther who has HD whilst my mother has a well deserved rest with a week away with some friends, its been a mixed bag of emotions this last week for me for a number of reasons, one of which is that I didn't realise the level at which my dad was at, another is that on the morning of looking after my farther my wife done a pregnancy test and its was positive ( through the help of PGD ) so I've not been able to spend any time with her!, and lastly I really do think that I've started to show some symptoms myself this week, so I've been a little stressed to say the least - anyway enough about me and back the question in hand!

How can I get some regular help for my mother and give her a little rest from week to week?

Not sure exactly where to start or even if my father would participate but I've got to try!

Regards

B
B is offline   Reply With Quote
Old 10-09-13, 04:13 PM   #2
Trish
Approved Member
 
Trish's Avatar
 
Join Date: May 2010
Location: England
Posts: 2,381
Default Re: Respite

Hi B

In terms of the respite situation, has your mum had a carer assessment from social services? Things have probably changed since my time (assessed 2007/8) but my respite came under that and they arranged for someone to come in and - for want of a better term - 'babysit' Steve a few hours a week. It wasn't an instant thing but it was what I decided I needed at the time. Little and often worked for me as I knew Steve would resist normal respite of going away for a period of time and be twice as much needing care when back home or I came back.

Later on I was able to find a place where me and Steve could go together. I appreciate many if not most people think of respite as a break from the person we look after (looked after in my case). However, it was wonderful that the place was basically a hotel for disabled and carers alike and we got to enjoy the time together. Park House Steve's part of the trip was funded under continuing care although I am not sure how that equates these days.

I'm not sure if any of the above is practical but it is worth having a chat with your mum, maybe inviting along her or your RCA and working together on what the options are and also how to include your dad into the solution. Steve resisted the weekly babysitting option initially but came around although he thoroughly embraced the thought of our going away together bless him.
__________________
I tried.
Trish is offline   Reply With Quote
Old 10-09-13, 05:02 PM   #3
B
Approved Member
 
Join Date: Feb 2012
Posts: 44
Default Re: Respite

Quote:
Originally Posted by Trish View Post
Hi B

In terms of the respite situation, has your mum had a carer assessment from social services? Things have probably changed since my time (assessed 2007/8) but my respite came under that and they arranged for someone to come in and - for want of a better term - 'babysit' Steve a few hours a week. It wasn't an instant thing but it was what I decided I needed at the time. Little and often worked for me as I knew Steve would resist normal respite of going away for a period of time and be twice as much needing care when back home or I came back.

Later on I was able to find a place where me and Steve could go together. I appreciate many if not most people think of respite as a break from the person we look after (looked after in my case). However, it was wonderful that the place was basically a hotel for disabled and carers alike and we got to enjoy the time together. Park House Steve's part of the trip was funded under continuing care although I am not sure how that equates these days.

I'm not sure if any of the above is practical but it is worth having a chat with your mum, maybe inviting along her or your RCA and working together on what the options are and also how to include your dad into the solution. Steve resisted the weekly babysitting option initially but came around although he thoroughly embraced the thought of our going away together bless him.
Thanks Trish ,

shes had no assessment and I've read a little that they may be able to help so ill start to make some enquiries there!

Our RCA said she would make a visit in the next few weeks so ill take some advice then from her as well.

Many thanks
B is offline   Reply With Quote
Old 10-09-13, 08:21 PM   #4
dennisw
Approved Member
 
Join Date: May 2007
Location: South Cumbria
Posts: 847
Default Re: Respite

You need to make a call to you parents "Adult Social Services" and ask for an assessment. Your father as someone needing assistance and you Mum as a carer.
They may do a quick one over the phone and subject to that a social worker will be appointed and will visit.
If you are lucky they will have heard of HD, but quite likely they will not have. So it is useful to have one of the HDA basic leaflets "What is HD" to help you explain it simply.
Do not make the mistake of under playing things, in answering the questions use worst days as answer not good ones. This is a classic mistake. If available RCA would come to a full assessment and help explain HD.
All support available has to start through a social worker so do not be shy to ask.
Various of the HDA information sheets can help "educate" the authorities.
Hope this helps.
Dennis
dennisw is offline   Reply With Quote
Old 10-09-13, 08:27 PM   #5
Cupcake
Approved Member
 
Join Date: Mar 2011
Location: East Anglia
Posts: 1,486
Default Re: Respite

Hi

I have found out there is a carers respite grant, £1500 that can be used for respite, my understanding is social services give you the money, you then arrange the care or day centre for the person who is ill, have a break ourself for a few hours, and then produce the bank statement and receipts at the end of the year to prove how you have spent it. There is also a £175 carers allowance to take yourself off some where for a break.

You need an assessment by social services, and a carers assessment, I have had these done, but as yet have to hear whether we are eligible for the grants. Everything I try and access seems to be No as yet, due to the fact hubby has pension from RAF and I still work. I have hubby going to the MS centre a couple of times a week, to give me a break as well as work, but in the long term that may not be possible and I think I will have to give up work.

Take care xx
Cupcake is offline   Reply With Quote
Old 11-09-13, 08:33 PM   #6
B
Approved Member
 
Join Date: Feb 2012
Posts: 44
Default Re: Respite

Thanks both, I'll keep you posted of my progress
B is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off

Forum Jump


All times are GMT +1. The time now is 03:23 AM.


About the HDA Message Board

A UK-based forum for people whose lives are affected by Huntington's disease and wish to share their experiences with others. Moderated by SHDAs from the HDA, a UK registered charity.

Please Remember

The HDA Message Board is not a substitute for professional advice. Consult a relevant professional before making decisions that could affect you or others.

Donate to HDA


Powered by vBulletin® Version 3.8.5
Copyright ©2000 - 2018, Jelsoft Enterprises Ltd.
Registered Charity No. 296453. Website Content © HDA 2010

HDA