PSP Association

A positive day today

The postman delivered us a Care Plan today following our visit from Cross Roads Care Service at the end of July. This will mean a Care Support Worker will stay with my husband for 3 hours (free of charge) and for any hour more than that the charge per hour will be £13.50 while I am able to go out. The 3 hours "free" are conditional upon using the same hours, same day, each week but if the sitting service is required on an Ad Hoc basis then the charge of £13.50 per hour applies. I would suggest that anyone who is not aware of this service should check it out. I live in Solihull and I know this service is also available in Birmingham. However, I'm not sure if other areas operate a similar facility.

Then, this afternoon we had a visit from a lady who works at the local Marie Curie Hospice. They operate a Day Centre for people who have debilitating and disabling illnesses as well as an In-Patient hospice. This facility was recommended to us by the Parkinsons Specialist Nurse. My husband will be collected and brought back home afterwards There are only 13 places for this Centre on each of the 3 days they operate, and two trained nurses are on hand along with several volunteers who ensure that the people attending the Centre enjoy a pleasant few hours together. We are both going to see the place in a couple of weeks when we return from a few days in the Lake District, and my husband seems really keen to give it a try. They are very much aware of PSP and all its complex symptoms, etc. and I feel that not only will a few hours apart give my husband something of his own to think about, it will utlimately benefit both of us by allowing me a few hours to have some "me" time.

I feel that at last I shall be able to "share the load" just for a few hours knowing that Tony will be looked after in a safe place. How long he will be well enough to leave the house there is no way of knowing, but for the time being I intend to take full advantage of what is being offered to help re-charge my batteries and give Tony a little bit of independence again.

4 Replies


Glad to hear you are getting some help. My husband used to go once a week to a local Day Centre. He enjoyed it because they played Bingo and he got to see other people for a change. One day he fell and hurt his head there and the woman who ran the place did not want him to come back. I had to really stand my ground and insist that they allow him to go back also because the fall was in part due to their negligence. Someone else I spoke to told me his local Day Centre would not take his wife because of PSP. Unfortunately there is still a lot of misinformation about this disease.

Take care



Really glad to read your good news. How lucky we are to have these facilities. My husband starts his daycare tomorrow, Because he is over 65 they can only offer him one day a week but we have visited the centre and the manager came to our home to assess and prepare a risk assessment. They are familiar with PSP and look after people with very complex needs. I am also about to contact Crossroads here in Scotland to arrange a sitter on another day. You sound really positive and I'm sure both you and your husband will get a lot of benifit from his daycare. Both of you have a lovely day. SheilaN


We look foreward to Wensdays. This is when our care giver comes in. She makes lunch for Mike and does a few chores for me. We both have something new to talk about. ( IKEA opened its first store in Colorado ) Have waited three weeks to go. I love my little excursions. The agency we use knows we want the same person each week. She is trying to teach Mike simple games on his computer. Today they will be enjouing some tomatoes from the container garden we still maintein.


That's so brilliant to hear. The day centre sounds ideal and exactly what you need.


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