Hospice and CHC

[Escada29]

Hi everyone, J is now under hospice support and CHC are sending in 6 carers per day he is not bed bound but gets very tired and is in bed fairly early in the evenings. He had a weeks respite at the hospice which was good although he had 2 falls whilst there and came home with bruises. The CHC will be reviewed in 3 months. I was wondering how much longer all this is going to go on for as now I am stuck in mostly waiting for all these carers to turn up everyday . The Sara Lee trust have been around asking if I would like therapies but I can't get out to have any! Has anyone else got tips about this stage in the game ??

[Satt2015]

Bless you Escada! Not heard from you for ages! I remember the waiting around for carers, used to do my head in!! It’s just another s****y stage of Psp I’m afraid! Just make the most of the help and take each day as it comes....you could ask for 2 lots of respite from chc per week, ie 2 afternoons of 4 hours where the carer sits with your husband and you can then get some time to yourself! Obviously just make sure your happy with that particular carer first! When we did this we stayed in the first time and pottered about upstairs, popping down every so often to keep an eye on the proceedings, the next time we went out for a coffee and were back within an hour (but didn’t say we’d only be an hour) the element of surprise is necessary I felt. Ask chc for this help but trial it slowly by doing what I’ve said to ensure you and your husband are ok with everything. Do come back and let us know what chc day, don’t believe they can refuse this, just tell them how utterly exhausted you are and how you cannot get out! Good luck my darling x

[kenh1]

I've been in a similar situation for almost six years now. Our local hospice provide at home sitters two days a week, they are all qualified nurses and superb. I also get help from relatives and friends and manage to get out enough to do some shopping and work one day a week as a volunteer at CAB I would have a word with the hospice, my experience is that they are as much concerned about your health as that of the patient .

[kenh1]

Thanks for your like. I would also add that our CHC are not very helpful on respite. I would recommend you contact CAB to find out what benefits you are entitled to, they will help you to claim. My wife gets Attendance Allowance and that enables me to hire a care worker to take my place while I have a break. She doesn't just look after my wife she spring cleans the house and with the nurses has changed some of the care. Some care workers are just doing their work for their minimum wage but there are some who are saints and she is one of them.hope you get the support you deserve. God bless. Ken.

[Katiebow]

I had difficulty arranging cover due to the high risk of falls and continence issues. Once I had a ceiling hoist installed there was one care company willing to sit with Ben as it was considered a two man job by his regular company, It's a tough one. I hope you manage to get cover as it's vital to have a bit of time to yourself.

Love Kate xxx

[Tippyleaf]

Good to hear you have got CGC funding - it dies take time to adapt to all these visits. Do you have a key safe? That would at least mean you don’t have to keep jumping up to answer the door.

As others have said your health is so important keep asking for help - we all need a break from caring hope you can find yours

Take care sending love and hugs

Tippy

[Sonic47]

From my experience,the quality of care seems very dependent on whether one can get independent,private carers. All of my mother's are privately employed by the family. They aren't more expensive,& in most cases are cheaper per hour but are a lot more flexible than care companies. The ones we have go over & above their duties & we'd be lost without them. They come when WE want so no waiting about. I couldn't praise them highly enough.

[Sonic47]

Ps. Obviously,we are lucky as we have some private funds with which to employ these people. If u are reliant on council funding it's obviously a lot different but even if u could afford an independent person for a few of those hours to give urself a break it's worth it, for YOUR OWNhealth.You are important as well. X

[Suebatt]

Hi

Ask for more hours from chc coordinator and tell them you need to go out and do things .when I had chc we went from 5hrs a day then 19 hrs a day then 24 hrs . Keep notes on what goes on at home daily so when they review you have got it at hand

If you have a community Matron tell her and she will be able to put her opinions to them

Hope you can get it sorted out

Take care

Sue xx

[Clair-28]

We have had an awful time as late, so much so if we didn't get more support via carers then the alternative would be my mum going into a home. We know this would finish her off. The social worker is applying for the money that it would cost for her to be in an EMI unit, she reckons this costsbaround £500 a week so we this we should be able to get a good amount of cover coming in. Not only is my dad stuck in all day but when I get home from work and she has a angry moment or a panic attack she asks for me, so I am there if I am not in work. Hopefully these extra hours will make a big difference.

Our social worker seemed to think we can't get CHC and that's why she going down this route.