PSP Association
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Carers know best! ?

I'd like to hear how you all find the best way to make suggestions to carers or to question what they are doing. I would hate to lose this agency who are all really lovely with Jon but I find it hard to make any suggestions or question anything as they seem to think that their years of experience and wide range of patients makes them much more expert than other professionals or me.

On one occasion I questioned the mode of delivery of some medication which had been modified following his aspiration pneumonia. It was our favourite carer but he didn't come back for weeks because he had felt crticicised. I hadn't been criticising just wanting information.

Recent example. At Jon's wheelchair assessment the occupational Therapist pointed out that his tendency to sit with his hips rotated was the reason he was tending to lean sideways in his chair. She said to check hip alignment when he was lowered into his chair, by feeling the top of the pelvis on both sides and if the one side was forward to rehoist and adjust. This should avoid him leaning to one side. Sounded good to me so I told the carer. But the response was that he had developed his own way ( basically propping up with cushions ) and it worked well. He did the same with another similar case and it worked for her too. Now I've had time to think about it I will insist on checking the hip alignment next time myself and see where we go from there. But I think if I had peristed in the first place he would have taken offence.

Another situation regards washing. Jon doesn't shower or bathe so he just has a bed bath in the morning and a wash at night and I'm not sure how thorough it is. His beard often is stiff with food or drink. Sometimes his tremor leads to him scratching repeatedly at his beard and results in loads of dry bits down his shirt front. Ive mentioned it once but been told they use a dry tissue first and then a wet wipe and what else can they do? But its still the same. Any time I fondle his beard (yes of course i do!) it's crusty. A good scratch and a wet cloth sorts it. As for the bed bath, the door is firmly shut behind them so I dont know what goes on. It usually takes them 20 minutes to change him, wash and dress him and transfer him to his kitchen chair for breakfast.

I know I'm not the most diplomatic of people so I would like your advice as to how to approach these things, what language to use etc.



11 Replies

Just tell them the way you want it to be done, go in the bedroom to get something, see what they are doing, it is your house not there’s so say what you like, in a friendly way , they should not get upset with you xxxxx


Rosemary I used to follow the carers everywhere! At first I don't think they knew what to make of it as all 3 of us stood outside the bathroom door while he was given privacy to use the toilet. I just started to talk to them about their lives...were they married, where did they come from and so on. So they got used to me!

Like your husband G couldn't get in the shower towards the front end so was washed by them in the bathroom. I went in with them! I told them if they were doing anything which I wasn't happy with but politely.

Why on earth are they using a wet wipe to clean his beard? Leave a face cloth out for him and tell them you would prefer it if they used that rather than a wet wipe. They can hardly refuse that? You can leave one for his face...a light coloured one and a dark one for his bottom half?

As someone said it is your home so go into the room. Just open the door, or alternatively get into the bedroom before they do? They can hardly tell you to get out? I used to help them. Probably put myself under more stress but at least things were done properly. Be polite and smile until your face aches, so they don't feel they are being criticised.

Rosemary none of this is easy but you do want your husband clean and comfortable. Only you know him well, and he probably feels he is only half washed? I actually learnt how to put a convene on by looking at one of the better carers. Some were so nervous of doing it and were delighted when I offered!

Good luck with this. Thinking of you.

Marie x


This is a tough question. I experience the same issue in a nursing home setting where they will not allow me in the room during his care. Have questioned numerous things in an extremely nice way, and now they seem to avoid me.

Something that has helped somewhat, as unhealthy as it may be, is supplying the aides with goodies, i.e. tastycakes, cookies, etc. They are appreciative and do realize I am not going away.

In a home care situation, I would think you have more control since you directly pay their salary. There have been times where I have asked them to "try something for me" and explained what I would like. "If it doesn't work well, we can go back to the other way."

Dealing with egos is difficult. Good luck.



Hi rosemary

1st and foremost you are the one who knows your husband and what his needs are .so to cut it short you tell them what you want doing not the other way round . The carers that I’ve had at mine the 1st question I ask is do you know what psp is and if not tell them to read about it as they my never be in contact again with who has it

When they are getting him ready like others have said go in and see what they are doing if you don’t like it tell them .

The language you use really is up to you rosemary I tell them from day1 that I swear and if I don’t like anything what your doing I will tell them

I would personally have a work with the care company manager and express your concerns and they way you want it or the other is if you have a social worker inform them there’s no reason whatsoever to loose the company you just want them to listen to what YOU want for your hubby

Hope you resolve this


Sue x

1 like

Rosemary firstly if this care is taking place at home, you can always be present, as far as I know, and 9 times out of 10 myself or my mum were present watching closely! You simply have to keep speaking up! At the end of the day you know Jon better than anyone and as for that crusty beard, not bloody good enough!! I found carers at home a constant battle, 10% excellent the other 90% ok or worse!! I’m afraid darling it’s a constant bloody battle and sadly that doesn’t end when/if a nursing home comes into the mix! You literally have to keep everyone on their toes and rule with a very hot iron! X


As others have said Rosemary, it’s your house and you are responsible for Jon. He should be getting a proper face wash with water. What good is a dry tissue and wet wipes. The measures I took with the care of my husband were a bit drastic but I insisted on being the second carer once he required two carers. The care company said it couldn’t be done so I thanked them for what they had done for him so far and said I’d be contacting CHC to find another company who would accept me helping. I’d already checked if CHC would agree to this and of course they did as they were paying £19.50 an hour for each carer. As soon as I told the care company this, of course they agreed as they didn’t want to lose the business. One carer we had for 3 years and was lovely so once I’d helped her take C into the wet room, I left her and would listen to her singing and laughing and C loved her. The others, I went in with them and we got into a routine. If I didn’t like something or wanted them to do something differently, I told them politely that this was the way C liked things done. I always put the convene on as rubber gloves and convenes don’t go together and so many got wasted at the beginning until I took over. I know being the second carer would not suit everyone but it worked for me, i’m In my 60s and fit, however you should not hesitate to say something if you don’t agree with anything. Be polite but firm and hopefully they will take notice.



I just bring up what I think about issues or something that is being done. I know not all care is handled financially the same but in my opinion if you're paying for it you have a right to question.

As for them closing doors when they are bathing/changing/whatever, it's your home, go in if you feel like it.



It's CHC funded care and I'm sure I would feel different if I were paying myself. Perhaps they feel that same difference. Maybe they feel they are answerable to the health authority primarily?


Can you ask the CHc is there are more suitable carers for your husband as the level of personal hygiene given is poor?

20 minutes to wash, dress and transfer into kitchen is not a long time at all and I'd say not doing stuff thoroughly at all.


My dad used to be propped up with pillows/cushions in his day chair and his old wheelchair and still slump.

We got an upgrade on a wheelchair that’s properly measured to his body and guards at the side and a head rest. This helps a lot and my dad no longer slopes to the side. I think they just don’t have the muscle strength to adjust their own body and it all depends on how they are placed in the wheelchair by the staff.

With regards to face cleaning. This is one of my pet hates. When I visit my dad I shave and wash his face. I manage to wash away old food stains. My dad also has a beard and I have had to trim it very short so the staff can see the marks on my dads face. It makes no difference though. There’s a notice on the mirror in my dads room stating new hygiene routine (think it’s to keep me happy) about washing my dads face after every meal and his hands. They still don’t do this. I take new face cloths every time I go, however they’re never returned non at his sink. I will be bringing this up with the staff this week as I would like to know what they wash his face with.

I have a meeting with a Parkinson nurse at the home this week to talk about my dads end of life plans and I will mention again my dads hygiene.

My mum gets upset that the staff don’t wash my dad down after every pad change, the smell of urine is strong and she worries about sores as he only has a bath once a week.

I would mention it to the staff, it will be on your mind all the time.

Good luck x


I'm replying to myself as it's the only way I can see to reply to all of you kind people who responded to my request for advice. Thank you all so much and apologies for my late reply.

Every single response has been helpful and what I have mainly taken from them is is that I do indeed need to be more insistent to get things done the way I want. Also quite a few individual useful tips.

I've made a start but I am up against it. Lovely as they are they are pretty convinced they do a good job (their way).

So thank you one and all for taking the time to help with your advice. There's nothing like hearing from those who've been there. Perhaps I'll get to thank some of you in person on March 6th.



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