Missus with Parkinson’s & a few other problems. At present she can just about get herself out of bed & dressed, sometimes needs some help. Gets around the house with the aid of a stairlift, zimmers etc. but becoming increasingly difficult for her. My question is what next? I am managing at the moment but how do I go about lifting, moving etc as she becomes more immobile. Also who do I speak to? I have asked at the GP , & recently had a carers assessment but they just give me a list of contacts.
@Noddir ask for your wife to have an OT assessment - they can assess for and provide aids to assist you in moving your wife.
It’s also worth considering a Needs Assessment for your wife - so care workers can come and assist her with a shower for example and as her condition progresses help her to get up and dressed.
Hi there @Noddir ! My husband has Parkinsons … had it for about 12 years and in the last few months he has had a sharp decline.
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First port of call would be to the Parkinson’s nurse at the hospital where your wife’s neurology team is based. Their job is to really help you and her with connecting you to services that can help. They can also give you advice - our Parkinson’s nurse advised us to apply for Attendence Allowance which we got - you will be eligible too and for the higher amount which is £108 a week. I actually didn’t have much to do with the Parkinson’s nurse all these years because my husband was managing just fine - it’s only now when he is having such a decline that I’ve been in touch but they are very helpful.
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I would get onto the hospitals community neuro-physiotherapy/Occupational Therapy team. This team at Guy’s Hospital has been a complete godsend to us. They came out, worked with him doing physio therapy exercises to help with his mobility and the OT has made a large number of practical suggestions but also ordered us equipment. They really know what they are talking about!
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Contact Adult Social Care in your local authority and ask for a care needs assessment. It is different than a carers assessment - This is where your wife care needs will be assessed. The upshot of this might be that you get a care package where they send out two carers four times a day to help with things like dressing, taking her to the shower, etc. OR they might recommend that the council install a level access shower or wet room.
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We also got a separate referral to the local authority OT service - they came out and did an assessment and referred us to the council Home Improvement Service… they then approved us for a full bathroom refurb - taking out bath and installing a level access shower, wet room and they waived the means testing.
Anyway, it is worth making all the phone calls. It’s a real bug bear of mine that no one really tells you all this. One thing I would say - you need to stress to the different services that you are finding it increasingly difficult to cope. All these services have a vested interest in keeping people out of residential care because it is so costly and they know that in order to do this, they do have to support people to live at home and they will prioritise you if you are feeling you might not cope.
I hope that’s helpful?
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Thanks for the very detailed answer. Just the advice I needed I think. Sounds like my wife is at a similar stage. Quite a rapid decline recently both physically & mentally. We have claimed attendance allowance. Easier than I thought. I think my biggest problem will be to get my wife to accept that she needs more help & that I can’t do everything.
Thanks again.
Richard.
yes, that has definatly been a challenge for me too! I did start off by booking Bluebird Carers (not the council as we hadn’t been assessed but also we would be self-funding anyway so if I am going to pay for carers, I’d rather have more choice) a year ago… just for help with housework… my husband was not very keen at the time but i managed to get him to accept it by saying all the housework was too much for me (I work full time). So that helped somewhat… it also became much more obvious that we couldn’t go on as it was… his grown up son (my step-son) mentioned that he thought a care home was the best option which my husband really, really, really doesn’t want to do so now the option of carers coming in to help with personal care looks like the least worse option. But that was horrible really and upset my husband greatly so much that his Parkinson’s symptoms worsened for a while under the stress of it. - but I was so stressed at the time because of his sharp decline and so was his grown up son and we didn’t know what to do for the best.
I do think it helps to start gradually - like just having them help with housework first… and then moving onto more personal care…
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Thanks again mscoachbeth. We have now got a paid for carer/ ‘cleaning lady’ in two days per week which gives me a bit of respite. Didn’t go down well at first but gradually getting used to it. Fortunately the carer is excellent. Slips into the background when necessary and helps when my wife will accept help. Also a great conversationalist which helps a lot.
I will contact OT next week and start with that. We can move on to an assessment & plan for personal care as it becomes more obvious that she needs it and emphasise that I will be unable to do it all and it is the best alternative to going into a care home which she also really doesn’t want.
I echo your comments that no one tells you these things. You just have to go out & do your own research. This forum has been a great help. Thanks again to everyone who has contributed.
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I know this is a difficult subject, but Parkinsons can count as a “severe mental impairment” and therefore the sufferer can claim EXEMPTION from Council Tax which can be backdated to the day PIP or DLA was first claimed. Martin Lewis said someone had a refund of £8,000+ ! The council will send you a short form so that they can ask the GP for confirmation of the illness. This might save a lot of money which can be used to pay for care.
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