Hello


#1
Hello, my name is johntyjack...my partner of 34 years has had Parkinsons for five, maybe six years...I'm sole carer 24/7, probably like most on here.
Not sure what kind of help I need, would love a break ...havent had a holiday or a break for over a year. cant quite see how someone moving in whilst I'm away would work? Any thoughts on this??

#2
Welcome Johntyjack,

I do not have a definitive answer for you and for sure this is the place you will get one. For the last seven years of their lives we had my parents in law living with us. The Mother in law was her husbands carer. He was on DLA which I think is significant and Respite Care was offered by Social Services. This entailed my Father in law being offered a bed in a care home for a couple of weeks so that his carer could have a break.

May I suggest that before you do anything else that you contact the PUK helpline for advice. This is also exactly what your Information Support Worker is for.I have made the assumption that you are a member of a branch and that you would be willing to part from your partner for a time.If this is not the case please forgive my clumsiness.[::redface:: You do not have to be a branch member to get advice it is just that I have found it a lot easier to get advice and support because I knew where I could obtain it.

At least this will get you started in the right direction and hopefully you will find an acceptable solution very soon.

#3
Hello Johntyjack. I worked in a care home which had a room for Respite care for which there was a great demand. I concur with what Bogman says. We had people (some with PD) who came in for one or two weeks, e.g. twice a year, to let their carer have a break. It must make it more feasible to look after someone at home if you get regular breaks to do your own thing. You would need take the matter up up with Social services who would arrange it, subject to funding available. To do it privately would cost around £600 a week. Some care homes are nicer than others, so it would be good to ask around, if Social Services offer options, so that your partner would be happy during their stay.

#4
hi ,im ali been dx 11 half years im 43.the above posts i would of said also about restbite,cus me handicapped bruv goes into restbite from me ill mom.but also cus they both have carers,when mom goes in hospital the care agency lets someone do sleep overs with me bruv.i no your the sole carer though so i guess that not applie to you yet,but may be a thought in the futre,if care agencies are needed.if you have a social worker they will be able to guide you,there are things set up for people in the same opositon as your self:smile:

#5
Hi jontyjack
Im new to the site but been dx 2yrs. all I can say at the moment is welcome....the people on here are honest and encouraging about facing life...im sure you will get good advice.

best wishes neenag:laughing:

#6
Hello Jontyjack,

Welcome to the forum, as the others have said there is a lot of information on here, you are entitled to a carer's assessment and if you don't get one insist on one as many people don't get one without pushing for it. My husband had respite for many years before having 24hour care at home then going into a nursing but he has had pd for almost thirty years and I am disabled myself. Some people find that going into respite somewhere doesn't work so do also look into options of more help coming in to the home. If you both get an assessment they should take into account your needs, it all depends on getting a good social worker some are very helpful and other only give the minimum of information.
I have just had another thought, sometimes you can get a discount on your council tax if the person you live with has what they call (severely mentally impaired) don't let that awful description put you off as the actual form describes many different conditions so it may be worth getting a form from your council to see what their criteria is, the discount here 25%,I don't know if other forum members know about this entitlement, you do have to be getting a benefit of some sort to qualify.
I look forward to seeing you on the forum in the future as everyone is so helpful and you need never feel alone.
best wishes
vivian