My husband had his first day at the daycare centre yesterday. Everyone, staff and 'clients' (I hate the term service users) were so welcoming. Some have extreme, complex needs but the atmosphere was so positive and friendly. I knew he was in good, safe hands but still got upset when I left him. Anyway he had a great day on the computer, playing carpet bowls, singing along to the radio and he even made me a present of a leather keyring. They are also going to organise a physio session for him. He chose his lunch from a menu and apparently settled well. The only problem was his refusal to go to the toilet, despite my chats to him about that before and after we arrived. He is happy to do that at home with me or morning carers but not yesterday despite assuring me he would let someone take him. Maybe the newness of environment and people was a bit too much. It meant a bit of a disaster on the way home but I'm sure we'll overcome that in time. Of course in the interests of client discretion, choice etc they can't insist or force someone to go to the bathroom. Maybe if I suggest a little more gentle encouragement or if I take him when we first arrive so he is familiar with a new loo. Any ideas? Otherwise a successful day. If anyone out there is hesitating about daycare I would say your loved one will get a lot of pleasure from meeting new people and enjoying new activities. They asked me to take a notebook along next week so that they can write down what he does, eats etc because he can't remember or explain himself clearly. The notebook will be my prompt to talk about his day.
Daycare.: My husband had his first day at... - PSP Association
Daycare.
Hi Sheila
I'm so pleased it went well for your husband at the Day Centre. Sounds very positive. We are at present making arrangements for my husband to attend a Day Care centre too.and your positive feedback has confirmed that it will definitely be in his best interests. We had a lady come to assess him just this week and when we return from a few days holiday next week, we are both going along to check it out. I look forward to having a few hours "me" time too. You have also made me aware of the "toilet" issue too. Tony tends to leave things to the last minute and I am already trying to make him understand that when we go out anywhere, he must tell someone he wants to use the bathroom. We shall see what happens. Hope it continues to go well for you and your hubby and enjoy your time while he is being cared for.
Take care both of you................SuzieQ
Hi Sheila,
I'd like to echo Suzie's comments ..... I'm SO pleased it was such a positive experience for you both. I think taking him to the loo when you get there is probably a very good idea. I'm sure when he gets to know them a little better he will allow someone else to help him, especially if it could be the same person each time....although I know that this may not be possible.
Like you I absolutely HATE the term "service user", its sounds so impersonal and cold. I don't like the term "client" much better 
if they must "label" people why can't they call them "guests" or "visitors"?
Love to both of you
Kathy
Hello Sheila,
I've been reading about your husband's first days at his Day Centre. My husband went to one for nearly two years and absolutely loved it. He started off by going one day, then two until he went almost everyday - apart from weekends of course. Even though he finally had to go into a residential care centre his 'gang' from the Day Centre visited him there every few weeks on their day centre bus. Richard's voice was starting to fail so I would always make sure I was there to 'translate'. We used to have such a laugh with them; they were a real cheery bunch. I called them the 'walking wounded' when they turned up with their driver and their male carer. One was blind, one had had a serious stroke, another had epileptic fits, someone else had MS. The Day Centres are a fantastic help when you are caring for someone at home. They certainly give you a break for a few hours.
Regarding the issues on toileting. I am sure the manager of the Day Centre wouldn't mind if you stayed at the centre with your husband until this was sorted. When your husband needs to visit the loo you and another carer could take him together. He would soon get used to the other person. Gradually you could let the carer take him on her/his own - whilst you outside in the other room. To pass the time you could always muck in and make tea and things like that. There are always pads, a conveen sheath or a catheter but I'm sure he wouldn't want those yet. Have a gentle word with him and see what he thinks. Tell him the situation and your dilemma. I am sure however, that he will soon get over his embarrassment of someone new taking him. Are then any male carers?
I have also found that a lot of places ASK their 'clients' "Do you want to go to the toilet?" and you can bet your life the PSP sufferer will always say "NO!" Have a word with the manager. Explain that people with PSP aren't capable of making correct choices for themselves. This business of 'personal choice' simply can't apply to PSP sufferers, they tend to say the opposite to what they mean. Give the day centre staff your permission to gently but firmly, TELL your husband when he should visit the loo. Once I had explained all this to Richard's day centre manager, they stopped asking and DID tell him when it was time. In a kind and gentle way, they would say something like,"Come on Richard, it's time for the loo!" and he would happily go along with them.
Hope this has helped and good luck. It'll all settle down I am sure once he gets used to everyone.
Maggie x
I
This is such good advice, thank you. You're right, he can't make decisions for himself and as his carer I hope I can 'advise' the staff to make the decision for him. They prompt him but make it a choice then don't take him. The wording is crucial. Today he fell and had to have a gash on his head glued. When I asked him 'Are you dizzy?' he said 'Yes' but when I said 'You aren't dizzy are you? he said 'No'. The staff are very good and hopefully they will welcome and not resent my input. Thanks.
Sorry to hear about your husband's fall. What a pity when things have been going so well. I hope the gash on his head will quickly heal and it doesn't cause him any more problems.
As you say, PSP sufferers are unable to make simple choices for themselves and can almost be manipulated into answering a question with the answer you want to hear. This terrible illness makes them so vulnerable in lots of other ways too. I shall certainly bear in mind Maggie's suggestion about advising the staff to suggest when it's time for the loo when my husband (hopefully) starts his day care. I'm just keeping my fingers crossed that he will like the day centre when we both go for a visit in the near future.
By the way, Sheila, Tony has had cause to have his head "glued" after a nasty fall earlier this year. It's amazing how quickly the wound heals and is far better than stitches.
I hope all goes well on his next Day Care visit and he manages to stay upright!
Take care..........SuzieQ
Encouraging words for us all today, may he continue to enjoy his outings, as any others visiting the day care centre.
Hi Sheila I am so pleased it went well for you both. I don't have any experience of DaY Care Centres but I do have with Short stay and certainly the toilet issue.
When I took dad to somewhere new as part of the first time there and with the approval of the staff I would stay and take him to where the toilet was just as part of showing him around. I'd ask him then if he wanted to go and he would either say yes or no and because it was me, after a bit of 'are you sure you don't want to go' I'd know it was the right answer. A short time after I'd ask again if he wanted to go to the toilet and if he did I'd just say I'll get one of the staff to help us then and they would come along with us. After that if dad wanted to go again which was about every hour and a half when he could still feel the sensation, I'd ask again or suggest going to the toilet and then I'd ask the staff if they would take him and because he was going to get to know them he'd go along ok. Because of the timing issue I let the staff know to ask him about every hour and a half or to ask him after he'd eaten his lunch. After than I dropped away gradually but it usually took a few days to get to this point. As usual with PSP it didn't always go to plan as if asked sometimes he would say 'No' when he did really want to go. But the staff were really helpful and gradually understood his first answer wasn't always necessarily the right one
Hope all goes well for his next visits
Lesley x
Thanks Lesley, I value your advice and tips. Although we had been shown around the centre and shown where the many loos are Eddie had never been into one. I am going to have a talk to the carers there and start with the two of us as you suggest then ask a carer etc. Thanks. I find all the suggestions, advice and shared experiences invaluable. This is the steepest learning curve I've ever been on and realize every day that I need stamina to get through. But you know despite mishaps, accidents and a glued head Eddie still makes me laugh. I gave him a cup of tea yesterday, he took a sip, screwed up his face and said 'I don't like tea'. I was surprised but after a short pause he said 'I like gin'. Just like on the TV advert. I'll treasure that for days.
Take care
SheilaN
Hi Sheila
Glad everything went well with your husband, despite the one glitch.
Tell me, how do you find out about Day Centres, are the same as an hospice?
good luck
dorothy-thompson
Well the resources centre Eddie goes to is for adults with physical or sensory problems. The other kind would probably be in a residential care home and is just for old people to have a day or so of company, activities and lunch so the staff might not be familiar or experienced looking after someone with special needs and requirements. Both provide transport although I take Eddie myself. His social worker organised it. If you don't have one ask your GP, he/she will refer you to social services and you might then be assigned a social worker or an occupational therapist might visit and make a referral for you. It takes a few weks to get organised so depending on your area and 'customer demand' it might be something to ask about quite soon.Assuming there are facilities in your area I would think someone with PSP would have no problem being accepted. Good luck.
As far as I know a hospice is specifically for those with a terminal illness, a final resting place where they specialise in pain control and easing the final stage of a person's life. I have also heard of respite care in hospices.
By the way the first few times I heard myself saying to someone that Eddie has a social worker I was embarrassed and a bit ashamed. But I got over it when I realised how helpful his is and what influence she has in organizing things for him. Pride well and truly swallowed!!!!
We have to try everything a few times before I get the least bit of co-operation from Mike. He doesn't want to be seen as disabled by anyone,even strangers. We talk about what he thinks about other people with asistive devices. He is very kind to all but just will not use his walker of chair anywhere but in the house. I had to go into the mens room with him this week. It was empty. He had a real hard time with the situation, but when I pointed out there were not suficient safety railings he gave up. One gentle man started to come in and I jtold him that we would be right out. This will happen again, and hopefully it will not be so difficult for either of us.
Hello Dorothy,
You were asking Sheila how did she get to know about Day Centres? We got to know about our local one through Richard's Social Worker too. She thought it would be a good idea to give Richard some stimulation by meeting others and it would be a break for me during the day. Having a Social Worker was also arranged through our GP.
These Day Centres are usually run through local county councils. There are lots of facilities on hand, care staff and a cooked lunch is usually available at a small charge, as are drinks and snacks during the day. Of course it depends where you live in the country as to whether there is one available in your area. A quick phone call to your local council office should soon tell you, but you will have to be put in touch with a Social Worker first, as previously mentioned.
Hope this has helped.
Maggie
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