PSP Association

Out of Home Respite

Has anybody in Australia had a happy experience when placing their PSP sufferer in out of home respite? My husband has just gone into an aged care facility for 2 weeks so that I can have a break but I am absolutely appalled at the way they are handling him. Seems to be a 'one size treatment fits all' mentality in there. My husband was continent and ambulatory on admission, but I am afraid that when he comes home he will be just the opposite on both scores. It is going to happen soon enough anyway, so surely the aim should be to maintain these functions as long as possible. Do any of the people running these 'care' facilities actually 'get' PSP???

5 Replies

Hi Lois

Your concerns are totally justified from my experience. The best facility for my wife seemed to be the Multiple Sclerosis Respite centre. Even there, a carer was not attentive enough to prevent my wife having a fall during a transfer.......from which she did not fully recover with respect to "movement" even though she only suffered bruising. (However, my wife is very forgiving and likes this faciity). I am now reluctant to send her to any "out of home" respite. We carers all need regular "respite" and our loved ones may also need a break from us! However, respite should not involve worrying about how our loved ones are being treated.

All the best



Thanks for your response T. I'm happy to know that I am not alone in expecting care appropriate to the disorder our loved ones have. I fully understand the difficulties associated with running an aged care facility, but I cannot come to terms with the fact that if one is in high care then their needs are determined to be the same as the person in the next room. If the facility cannot offer appropriate care then they should not accept individuals who do not fit within their operating parameters. In just 48 hours I can see the light going out of Don's eyes as he sits in a corner of his room, in a nappy, waiting to be told what to do next.

I had a look at his chart yesterday and the RN who admitted him has recorded him as being doubly incontinent, vision and hearing impaired, with a behaviour issue that has Don throwing himself onto beds and into chairs. Really, that says it all-absolutely no idea despite being told exactly what Don's problems are at this point in time!!!

Today, instead of going on the planned holiday, I am off to liberate Don. Wish me luck.

1 like

good luck , you are the best judge ,,

1 like

Thanks cabbagecottage.

He has been freed from the indignity of wearing nappies day and night, when he didn't need them, and from being growled at for asking for help to use the toilet.

This has been an excellent example of how vulnerable our loved ones are and how strongly we need to advocate on their behalf.

1 like

It's a worry that you might have to place your husband into a nursing home with all that goes with it . I know from my experience when my mother went into one for three years .

I didn't at ther time know the way round ways to keep someone at home . A stroke happens so suddenly and my husband was diagnosed with Parkinsons at the same time .

I know if my husband went into a home they would straight away put him into pads day and night . We use them at night but only to save me waking all the time he isn't incontinemt but is immobile . I only use on if I need to go out for a few hours but I remove it as soon as I get back . he can be hoisted onto a commode . If I can do it , I am 77 you would surely think a much younger CARER could do it . But NO they have to have it double handed . Health and safety!,

1 like

You may also like...