PSP Association
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PSP carers available

Hello everyone,

Before I start, I would like to appologise in advance, if this post shouldnt be here. If it shouldnt, then please let me know and I will delete it.

My name is Janette. I have a nursing background and I’ve been a live in arer over 19 years. I had a patient with PSP, I was his live in carer for 7 years. I learnt so much from him, but I can say, I gave so much too.... all my knowledge, care , all my time I could give, sometimes sacrificed my family in order to be there for the patient.

The biggest reward was for me or us carers, that each time we had an appoitment with his neurologist, each time the neurologist was pretty surprised that he was still here, alive. The neurologist said, it was also because of the standart of care we delivered as well as the the patient’s determination/strong will power to live, not to give up.... that was mine reward, not only appreciation from each family member and the patient, but the words and praises from the specialist.

Anyway, we have learnt a lot as I mentioned, i knew how to fill up neverending forms for funding and how to fight for the rights of the patient, my nursing background help me to deal with paliative care team, with physios, with OTs, ordering any neccesery equipments, we were lucky to get what ever we wanted. We learnt how to “fight” for my patient. 7 years was long 7 years, physically draining, mentally draining work, but oh man, it was worth it.

Me and my colleague (now best friends) had very difficult time after he died. It took us a long time to grieve.... We ‘ve stayed in touch with his wife, we meet now and then for tea and have reunion each year.

We moved on as I said, its been over 2 years....but somehow we cannot find satisfying work. I m a live in carer for a lady with different, completly different medical problem, my friend works with Dementia and Alzimers patients as a dailey carer in NW London.

Its only lately we found out, why we are not happy... We know a lot about PSP, we want to help people who have PSP, because it is such a rare illness, not lots of carers have caring/nursing experience in this way. I know everyone deserve equal care, absolutly. But we relized that we would love to became carers and help to those have PSP again.

Im a selfemployed live in carer, i have free one long weekend in each month at the moment. If anyone of you anywhere in UK ( would prefer London but willing to travel) are looking for a live in carer for respite , or to give you a hand with looking after you, your partners would need a help or someone else you know would need a help get in touch... maybe I can help.

My friend Hanne, who is a selfemployed carer, living in NW3 London, is also available, 5 to 7 days a week.

We have really great references. I, from my heart can say, we are good, dedicated carers who care.

Do get in touch with us if we could help you.

If any of you or admins think, that this post shouldnt be here, thats this place is not the right place to put this kind of post, please accept my appology. Do let me know and will immediatly delete it.

Thank you to those who read till the end.

Wishing you all a nice evening.

24 Replies
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Hello, Janette, and welcome! I am in the US and hardly an arbiter for this site, but I think your post should be very welcome. Finding good, caring, qualified help is something many of us have struggled with. Especially for respite. I think for someone here you may be a godsend. I hope you find a good post, but also hope you might meanwhile chime in here sometimes to contribute some of the knowledge your experiences have given you. I'm sure you have good practical advice!

Best wishes.

Easterncedar

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You are a treasure for the way you stay connected.

Whenever I see you post I make sure I read it.

God Bless you and yours.

Rita

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How are you doing, Rita?

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Thank you for your kind words xx

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Wish you were here in the USA!

God Bless you

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Hi Janette, Hope someone in your geographic area is able to contact you and benefit from your dedication and experience. I totally understand how you would want to keep using those skills, knowledge and techniques that you developed over a long time. Someone will be fortunate to engage you! (I'm in Canada...a LITTLE too far ;-)

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Hi Jannette, Ben is CHC funded so don't know the position on respite care for live-in carers, are they from a register of live-in carers do you know? We live in East Sussex.

Love kate xx

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Hi Kate

You would have to convert your CHC payment from direct service to Direct Payment. You would receive the money instead of the care. You would then buy iin the services you need. You have a legal right to do this by the way. You would have to keep simple accounts of the money you spend. The only complication for buying care in is that they would need to be a 'company' otherwise you will have to do all of the PAYE. If they are a company you only have to pay their invoices.

Hope this helps a little.

Best

Kevin

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Thanks Kevin, your have a head full of very useful information, I have a head full of useless information which doesn't help the cause. I'll see how Ben gets on at this new nursing home this week and make some decisions after that.

Love a Kate xxx

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Good evening Kate,

As Kevin mentioned, you can be the one in charge of the money, instead of a nursing agency. What I’have been told, but not necessary has to be each case, that agencies are charging such a high commission and pay carers peanuts. Therefore, the carers dont put that much effort in caring if paid so little. So many clients decided to take funding into their hands, got self employed carers, paid them more and expect higher standards of care. But always keep nursing agency as a back up, just in case regular carer calls sick or so.

As I said, this is only what expierence some of my clients had.

If you would be interested in respite care or just to have a chat, please feel free to inbox me, and will see how I could help.

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Thankyou for your message Jannette, it is something that I would certainly consider if Ben's respite doesn't go well. I will definitely contact you to find out more about the service you can offer.

Love Kate xxx

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I would be very interested Janette. We live in Hertfordshire and at the moment John is in a care home but am trying to get everything in place to try and have him at home

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Good evening,

Thank you for being interested. Please feel free to inbox me and we can chat and also help or give ideas for happy settling down at home. Its a big step, but once you have the house/equipment/care/support you need, things will get easier.

Till then have a nice evening.

Janette

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I live in west Sussex and my husband has PSP. At the moment i am coping but who knows how long for. I am going on holiday for 2 weeks in August and looking into respite care for him. The options are a care home or at home but will discuss it with him in due course. I think home may be favoured as it is familiar to him and friends and family can visit easier.

What are yoir charges?

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Good evening Linda,

Of course home is the best option. The anxiety of going to be somewhere new .... that doesnt help. Your husband can get all tha support at home 24/7, knowing someone is there if he needs anything immediately , where as in nursing home - yes, support too, but not Within few seconds.

On the other hand, i knew about few people with PSP, who loved to go to hospices for a respite once a while, while spouse away. From medical point of view, they feel safer there. So it is very individual.

Please inbox me if you would be interested me to help in August or when you wont be able to manage on your own and needing a extra pair of hands once a while.

Have a nice evening.

Janette

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Thankyou for your reply. Very much appreciated and will bear it in mind.

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Hi Nanette we are in the West Midlands and desperate for some help!! Wish you were closer. ❤❤

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Good evening,

Thank you for your message.

What kind of help do you need ? Live in or daily carer?

Feel free to inbox me, and will see if I can be any help.

Have a lovely evening.

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Oh wow what a lovely post to see.

We are in Shropshire and if you were willing to have a chat and travel I will snap your hand off for a weekend respite. I have the budget but can't find anyone to fulfill the needs. Mum has CBD so similar to PSP.

The need for this sort of care is so great across the country.

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Good evening.

Thank you.

This sort of care - live in care, is expanding a lot lately. CBD and PSP are not such common illnesses, therefore not that many carers can gain experience and getting a good carer can be a nightmare. What we learnt with previous client when expanding his team of carers was - not to get just anyone, but to be picky and getting the best ones. And we did.

Please feel free to inbox me, and will see if I can be any help :).

Have a good evening.

Janette

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I am picky but there isn't many to be picky with locally. Recruiting care staff is like gold dust. I've replied to you message. Many Thanks

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Thank you everyone for your kind words. Thank you thank you thank you. I will reply to you all seperatly tonight or tomorrow, Im overhelmed with your sweet and kind messages. And Im very much looking forward to helping some of you or your closest one. Till then have a lovely evening.

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You and your friend sound amazing, I have been caring for Leon ( Hubby) for 8 years now, he has just gone into care, I would love to have been able to keep him home till the end, good luck and thanks Keeps us all going I am sure, unfortunately Australia is probably a tad too far

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Hi Janette,

I’ll be interested and needing help once I get my husband back home. Yes, please message me details. Thanks

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