What are your main concerns as a carer? - PSP Association

PSP Association

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What are your main concerns as a carer?

pspa-helpline profile imagepspa-helplinePartnerPSPA217 Voters

Please select all that apply:

17 Replies
Chris_F profile image
Chris_F

Interesting that the highest scorer is:- what if I am ill ? I'm registered with Carers in Crisis down here in Dorset, if I become incapacitated I've given them a plan that they will kick start once they receive a t/phone call

abirke profile image
abirke in reply to Chris_F

wow good idea! we don't have anything liike that here in the US that I know of anyway

Yvonneandgeorge profile image
Yvonneandgeorge

I think that is a big concern, we have also got Isabel hospice that are always willing to help

Heady profile image
Heady

Yes, what will happen to S when I am ill, is a huge concern. But, I am not really worried if I am seriously ill, I know social services have a plan. It's the little illnesses that bother me. if I need to see the doctor, what happens then? I don't want to take S, can't leave him in the waiting room. You don't get a choice of appointments, so getting somebody to just drop everything and come and sit with S, will not always be convenient.

There should be some sort of system, that carers have to register, to get better access to doctors. But then, so should our loved ones, who have this evil disease and not have queue up behind little Johnny, with his snotty nose!!!

If the NHS want/demand we take full care of our loved ones, then we need some care and support ourselves. A service that you could call, that would provide an hours care at very short notice, so we could attend the doctors, physio or any other medical need that may come up, would help enormously. Might stop a trivial backache, turning into a crisis!

Heady

shasha profile image
shasha in reply to Heady

i think that is abrlliant idea heady - THERE SHOULD DEFINITELY BE A REGISTER FOR CARERS AT EVERY SURGERY ...

DenB profile image
DenB

I have been trying to join the PSP association....my husband has CBD.........but I gave never had an answer! I filled the form in on line.

pspa-helpline profile image
pspa-helplinePartnerPSPA in reply to DenB

Hello DenB

We are sorry you have not had a response to your on-line membership enquiry. Please contact the helpline 0300 0110 122 or email helpline@pspassociation.org.uk we can resolve this for you straight away.

Kind regards

PSP Helpline

DenB profile image
DenB

Our local hospice has said that if I needed to go for an appointment and couldn't get a sitter than they may be able to help with my husband.

Sayer profile image
Sayer

My wife has PSP.and over the past few year I have filled in at least six q'nnaires/polls asking questions about, health wefare coping etc. What happens to these q'naires? Who benifits from them? I cannot say that I have. A reply would be something.

Thanks.

pspa-helpline profile image
pspa-helplinePartnerPSPA in reply to Sayer

Dear Sayer

Thank you for taking the time to complete the polls we post on HealthUnlocked. The PSP Association post regular polls so that we can get a better understanding of peoples needs in order to ensure we are best able to respond. Polls also help us to shape our services for the future in relation to development of information, local support and raising awareness. We will from now on be posting the results of the polls with an explanation of what the information will be helping us with in the future.

GAD42 profile image
GAD42

I have several concerns with PSP. My husband is in a LTF because I was burnt out. He has changed greatly & I want to be able to understand so I can give the info to the PCA's. I need help now about this Horrible Disease. I know this does not go with the REPLY but I want to get my plea in.

shasha profile image
shasha

I ASKED MY HUSBAND ALL THE QUESTIONS And this wAS HIS REPLY .. HE FEARS BEING ILL THE MOST

happyjackandjoan profile image
happyjackandjoan in reply to shasha

back in late 1960 I was in catholic all needs school one to one

Robbo1 profile image
Robbo1

I ask for a doctor to come to my husband if he needs a visit. He is due for his flu jab and I have asked if I can have one at the same time here at home. Our doctors are good in this way. They gave me a leaflet some years ago, which I filled in and returned to them. I am now on their Carers list and regularly receive newsletters from our local Carers Service. The leaflet was an NHS one and not just for their surgery. It might be worth asking your doctor about it.

happyjackandjoan profile image
happyjackandjoan

look up to god my friend

_gvis-8 profile image
_gvis-8

We in South Africa do not have government help in any form. We have to cope with everything on our own. My biggest problem is coping emotionally.. It is so sad to see your loved one in this condition...

abirke profile image
abirke

You need to re run this poll . new people and i did not see some old folks there either. How did you get 134 voters but only 14 replies?.

I do not know how to vote on this site so i'll just tell you how I feel 1-5 corresponding to the question and 1-10 corresponding from least to greatest.

1...8 VERY DIFFICULT...NO ONE THERE TO HELP

2...6 doing ok in that we have a roof and food.TV and other media only for entertainment

3...8 shit

4...2 I have become very creative in this area

5...3 with this one becoming more on my mind