Need a short information hand out for care givers

I'm trying to find a short but to the point of PSP to give home care and any medical team I come across.Need it to short because no one will read it otherwise.

Thanks

Dee

[Yvonneandgeorge]

Ask the PSP association if they have anything xxxx

[Satt2015 in reply to Yvonneandgeorge]

They do Yvonne and are happy to send it, once requested by anyone x

[Kevin_1]

Hi Dee

I expect they won't even read 10 lines.

Sorry, that's my experience.

I found it hard enough talking to them directly.

I used to say a few words, wait for the glazed eyes and then say, "Please come back to me this is important." They are often too tired and too distracted in my experience.

So I would do it training style.

Once I got them focussed as above I would say:

"I am going to give you two things:

Essential facts about this unusual illness - It is completely unlike Alzheimer's . So don't get caught up on previous experience.

Then I will go through risk. Which is unusual for this illness and it will protect you."

Even with those attention grabbers it was sometimes hard to keep them focussed.

I kept it short.

Then I would shadow their first session - keeping a little out of the way so as not to make them feel watched. The key things, I found, was to point out best ways of doing moving and handling, to stop them being patronising and to keep them focussed that my lovely could communicate and had capacity. The last tow points sometimes took a while to get accross to the poorer carers.

I found it useful to keep an eye out and occasionally re-prompt them about capaciy and communication particularly. So often they would short cut and take control without asking Liz what she wanted.

I hope this helps.

Best

Kevin

[Kevin_1 in reply to Kevin_1]

Adding - I would not tackle all issues with a carer every time, little by little with a lot of praise and encouragement.

[Hidden in reply to Kevin_1]

Thanks,I was thinking the on the same line,but I thought someone may have made one up,off to buy a laptop,daughter took mine and the old desk top calf it so I'm left with a tiny tablet to which I can't print from.if nothing else I will make my own,they can read them or use them for scrap paper.lol

[raincitygirl]

Hi Dee; CurePSP website has documents....Descriptions, and separate FAQs

Anne G

[JR61]

pspassociation.org.uk/for-p...

Try this link there are lots of resources which, hopefully, may be of assistance. Ruth x

[Dadshelper]

I used this form for dad...

hampshirehospitals.nhs.uk/m...

I filled it out and kept it in a bright red folder with Emergency Info written on it. It was not so much to inform any aides coming into the home but to inform any emergency staff that may be called in if I was out while aide was here. Aide was instructed to give it to them and have them give to doctor. That way at least the medical staff had a basic idea of what dad had until I could get to wherever he was taken.

Hope that helps.

Ron

[Finoni]

We have a 'credit card' of information from CurePSP that lists the symptoms on one side and briefly describes the condition on the other. The sort of thing you might hand to a waiter or any new health care provider

I copied it large when J has been in hospital and posted it on the board in his room.

[BABALINDA in reply to Finoni]

How I can get one

[Jdjdjd in reply to BABALINDA]

Sorry to just jump in here, but the PSP helpline have fact cards, about the size of a credit card, they sent me about 100, as I give them out like sweets to everyone, to help raise awareness and for information to carers gps etc, I also sent them out in my Christmas cards, never leave home without them

Good luck to you all, I don’t post often, but read daily

Much love

Janet

[hiebert]

Good morning Dee, this is what we wrote up for my mom at one of her stages of care. This is a fluid document which we update as her disease changes her responses/needs. We chose to focus on her specific needs, as every person with psp presents slightly different symptoms. This makes it easy for care givers to know what is going on rather than having to evaluate and asses her needs (often to busy to take the time to do this). Hope this help. Erna

Anna Hiebert suffers with

Progressive Supranuclear Palsy (a rare disease that causes serious problems with walking, balance and eye movements)

An erroneous impression of senility or dementia can be created by the PSP patient’s combination of speech difficulty, slight forgetfulness, slow (albeit accurate) mental responses, personality change, apathy and poor eye contact during conversation.

Balance

while she has strength her body is stiff and she has compromised balance which make her movements slow and awkward

Vision

has difficulty aiming the eyes, especially looking down or up, eyes may appear unfocused and cause her to look disinterested or unaware. This also makes it more difficulty for her to feed herself neatly.

Facial features

masked face (little or no expression) she appears unaware or disinterested however be sure she is aware of what is said “about her” or “about what is going on around her”

Speech

· she often has difficulty finding the correct words to express her needs and as a result rarely express her needs.

· She may moan or cry in order to try to express her needs (our experience means this could be headaches, stomach aches or boredom (needs a change of scenery)

· In unfamiliar situations she may not express her needs at all as she feels it is to difficult to get someone to understand her needs

Activity

· She enjoys watching or listening to what is going on around her, but loud continuous noise is irritating to her

· She enjoys soothing music

· Does not care for television

Eating

She has a good appetite (needs small meals as she is putting on weight) but not a good stop button (perhaps food is one of her few pleasures left

She has difficulty eating soup (utensils are difficult for her to manipulate)

[hiebert]

Also if you change up the font/bold/italics etc different things will standout