Daycare disaster.

[Escada29]

I thought it was all going soooo well. I was really enjoying my days when J went to daycare at a local care home but as the saying goes all good things have to come to an end. I picked him up last night from daycare with a carpet burn to his face and was told he was too high dependency and could'nt come anymore. Now I have to shop around for an alternative solution. I feel very let down by these people. I did my bit getting him up washed and dressed and getting him there and their job was to look after him and it did'nt happen . Am quite upset .

[Katiebow]

I'm upset for you, when our carers visit there are some that I know just don't understand their vulnerability. I hope you soon get somewhere that understands, do you have a hospice nearby, our local hospice have a few people with PSP and understand the condition. Hope you soon get somewhere suitable soon.

Love Kate xx

[abirke]

I know how you feel. The only centers that would be fremotley helpful for my husband only cater to senior citizens....There no places for my husband....thus he sits home all day! I got him, I thought, a second round of PT (we had some last year...or in spring) .Thsi PT only gave us some exercises but told us that there was nothing more he could do for us....so unless I initiate Bruces activity....nothing for this man happens...to be fair he does do his own ramp walking, 10M of ramp at our house he walks up and down 2x daily; And granted he does not miss so much social activity....BUT I SURE DO! i want him to keep physically active...I don't even want a babysiter just a place for him to find mental and physical activity....not going ot happen...that I know of...So I feel your pain sister! I hope you find a place that understands your partner's needs! I have read that there are other place there in the UK that understands the need of a PSP patient....you might go there and see what they do that can be easily applied in other facilities...

Good Luck Dear,

AVB

[Yvonneandgeorge in reply to abirke]

Oh my god that is disgraceful, George goes to a day centre, run by the council, we have to pay for but it is well worth it, is there nothing like that where you are? Sending you a hug. Yvonne xxxx

[abirke in reply to Yvonneandgeorge]

I have looked into Area Agency on AGing....nice lady came out...but she's the one who said that Bruce is too young....I'm sure there is stuff for him the PT said "what about Parkinsons therapy...?" so I will look into that...we just don't know it still!

[Duffers]

Oh dear. How distressing for you both. Unfortunately as this devil of a disease progresses our loved ones do become high dependency and it's not everyplace willing or knowledgeable enough to look after them. My hubby ger has 1 day a fortnight at our local hospice. Not an enormous amount but it helps him and me for a bit. Ask your GP for respite and see what he says. Good luck with that. Take care. Marie

[PUTLAND]

So sorry for you. Just when you think you are getting a break its taken back from you. My husband goes to daycare once a week and he would be high dependency as he keeps trying to walk and falls a lot. The daycare keep him in a wheelchair and he is better behaved for them. I though daycare would be well prepared for caring for patients. Dont give up, go back to whoever arranged this for you and see can they get another place. We need a break. Take care of yourself xxx

[Amilazy]

Sorry to hear of your daycare let down, but it is a common problem our council daycare only took M for a couple of sessions early on then kicked her out same excuse as you got, M was was too high a dependency for them, in some ways a relief as M at 59 was youngest by at least 20 yr. Over the next 4 yr we used and were happy with 2 hospices day centres but they both eventually gave up. The best I found by accident was a local Stroke group who accepted M as long as I was there to feed her. They provided activity and social contact for M but also gave me social contact.

This ended last winter when M had a choking fit that I sorted but it upset and panicked the others causing one to fit in sympathy. She went into the nursing home in April so day(night) care no longer an issue.

All I can suggest is check out your local hospices get GP to refer if needed. Also check out your local charities (Parkinson's Association, PAS (positive action stroke), they may have a group close by.

Good luck Tim

[doglington]

I bet you are ! Its ridiculous that its left to untrained family to look after some-one beyond the scope of professionals.

Do you have a local hospice ? Chris goes once a week. Its my life-line.

love, Jean x

[Escada29 in reply to doglington]

Yes Jean if a care home cant do it who the hell can??? I feel totally let down and cross he only wanted the loo and no one was around and now they dont want him. It sounds like to me if you need attention you are OUT!!!! We have already done the hospice thing and they said he was a danger even then. xx

[Heady in reply to Escada29]

I had this when I was looking for respite for S. The nursing home said they didn't think they would be able to cope. I'm afraid I lost the plot big style, if a nursing home, who had had PSP patient, wouldn't take him, what on earth was I meant to do??? Nearly gave in, then and there. They did take him in the end, but I will never forgive the "sweet lady" Thankfully, the staff, especially one nurse, are brilliant and S is very happy, when he goes.

If your husband has been going to the locally run council care centre, I am not surprised they can't cope. Get in touch with your local hospice, most provide day centre's. Of course he is never going to be completely safe, PSP has seen to that.

Lots of love

Heady