I was sheltering indoors from the late afternoon monsoon yesterday when the phone rang. The lady gabbled on for a minute before I recognised then name of one of Bug's physios. She was a social worker and keen to offer us both respite care, and for bugs ramps, help with bathing, cooking, cleaning, dressing and daytime visits to prepare /give meals such as a sandwich at lunchtime.
It was dawning on me that somewhere there is a planet where it is always sunny and nice - the inhabitants are all sw's.
I tried to explain that, at the moment Bugs can wash and dress just about ok but needs supervision in case she falls -"so she doesn't need help then". No she needs supervision in case she falls. Why would she fall? What about meals- who does the cooking? Me. Well we could come and give her a sandwich at lunchtime. Bugs cannot eat sandwiches. Why not? She can't manage the bread and chokes or simply cannot swallow it. Why does she choke? Its part of the illness. Best question coming up "What's wrong with her then". PSP. What's that? Tell her the full name and listen as she types. I don't bother to correct supernuclear.
She repeatedly asks what they can do and I am sorely tempted to tell her. Instead I say that I am not sure, I don't understand fully what they can offer etc and that I had hoped that the call would be to arrange an appointment so that everything could be discussed and that they could meet Bugs. "What a meeting, like face to face?" Yes please I answered (resisting the temptation to ask if she preferred Skype or video conferencing). Oh, I'll need to talk to my supervisor and call you back.
Perhaps I am showing my prejudices but she did sound just about old enough to be doing work experience and used sentences where like is a conjunction and end in "right".
I must admit to having very little confidence when the SW did not even know the nature of the illness, symptoms and therefore likely care needs.
Wait for the next episode!
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Tokki
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Hang on in there Tokki. I'm sure they will "get it" one day. Make sure you get the face to face meeting and if you have any printed information on PSP, give it to her. If t you don't, download it from the Internet before she comes and make sure she doesn't leave without it. Further down the line, when more help is required, hopefully they will know Bugs better and you will probably need all the things she offered yesterday, and more. Hopefully not for a long time though.
Thanks, I've got a library and most of it I know by heart! It's nice here today so some work in the garden and cats to vets for 6 month check up while Bugs is at hospice and then await the 'phone.....
I had same type of experience.,when eventually a face to face was organised the social worker told me that the first contact via telephone is from a type of call centre , unexperienced staff.....that's why I was asked if my husband went out on the bus on his own and did I do any voluntary work, and did his illness affect me at all!!!
Apparently it's to save the social worker time , it's plain ridiculous. I agree with NannaB, hang in there it's a slow, slow process, and exhausting. At the end of it I was awarded some sitting time , but nothing has happened yet. Best wishes.
Walking 'progressively' further!! Know EXACTLY what you mean! Am fighting the same battle with CBD! Have wswatched my man's progression for past 4 or more years as I persuaded him to join a gym and exercise! 5 years ago he was going out for an hour and covering 5kms. 3 months ago he would go outfor half an hour and get 250m there and back.
How frustrating, but we DO UNDERSTAND! Hang in there!
Hi Tokki remember that the professionals want to keep out of your life and not have to do anything. I learned very early to give them the state on bad days not what M could do 80% of time with supervision. I also got the information cards from PSPA that I handed out to all professionals and made sure they read them before putting in their notes as many have no idea of PSP.
I also tell them the description I got after listening to a comedian (Mark Steele I think) who did a turn on the radio about his experience with his dad's PSP, I use a short hand of his description:
PSP is Progressive: it does not get better,
Supernuclear: the middle of the brain,
Palsy: rot,
so PSP is the rotting of the brain that does not get better. It was funny when he said it but it grabs attention of some of the silly professionals who try to put your wife into a convienient box.
You need help now to care for your wife now, if they won't help contact their boss or the local ombudsman if you are in the UK.
Might have been Mark Thomas, F had to see a gastroentologist today for his colitis, I was expecting to have to explain the PSP, but he was aware of what it was and was talking about a comedian who's sketch about his father explained it well! I was expecting to have to give one of the PSP cards!
Charles is in the same place. He is stable and needs minimal help. The part about the sandwich made me laugh, but it's not funny, he can't swallow. And I leave out paperwork and info about PSP. No one even takes a look at it. In the old day people did their homework before beginning a project, etc. Now its a glance and they know everything. Hang in there. I'm with you and having a little giggle besides.
Funny, I would love such a call! Most of the help I get I have had to find on my own. One aide is partially paid for by the Veterans Administration. She is supposed to be a home help, but she and the other aide, whom I privately hired, basically provide the supervision that keeps him from falling while I am at work, and help feed him breakfast and sometimes do make him a sandwich. Eating he manages pretty well still. I always come home at noon to make sure he has lunch and deal with incontinence issues. My guy can't bathe or dress himself, and I could use that help, and oh, for some respite! Closest thing to that is my going into the office. And the social worker was offering to arrange home cleaning? I have a very nice woman come in every other week, but she is madly expensive. i can't afford to stop working, but sometimes feel my life is, as they say, held together with spit and baling wire.
I recently had contact with a sw she did not know what psp was so I advised her to Google the condition she said she would. If she does then its another person who knows about psp she was very helpful though
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Our battle with PSP
mother with PSP in Italy. 
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