Yesterday Tony and I were invited to The Marie Curie Hospice near where we live in Solihull to check out the Day Respite Unit. What a wonderful place. There were people there of mixed abilities and suffering from many different illnesses. The unit has two trained nurses on duty, together with several volunteer helpers. Tony loved it and it's been some time since I saw him as enthusiastic about anything. They offer many and varied things to occupy the time, but we were told it is perfectly OK if a patient just wants to sit quietly or do their own thing. It is a mixed group and when we arrived they were just finishing lunch. There was a lot of good humoured banter going on and everyone was so welcoming when we joined them. I had a really good feeling about the whole set up. The location, the patients, the staff, the facilities, etc. and I feel reassured enough to leave Tony in their care. They have previously had patients there with PSP so the staff are fully familiar with the illness.
They have offered Tony a place with them every Thursday from 10am to 3pm and will even arrange transport to collect him and bring him home afterwards. I cannot believe how fortunate we are to be offered this facility, particularly as there are only a dozen places on each of the three days they offer the service. The PD Specialist Nurse arranged this for us when we saw her at the beginning of the year and I had begun to think it would never happen. However, I should have had more faith in the help that is available to us.
Having seen all the positives I confess I did get quite emotional when we arrived. It seems so sad to think we actually need this service. 3 years ago Tony was running his own business and still able to join me every weekend to walk a minimum of 7 miles with our rambling club. How things have changed. On a good day I feel that I can cope but on the difficult days I can't wait for someone else to take over for a few hours. I am sure I shall feel a bit strange next Thursday when he attends for the first time, but the prospect of having just a few hours of "me" time feels really good.
There is no way of knowing how long he will be physically able to attend, but as carers, we all know that a few hours of respite is so appreciated (and necessary).
I hope it all works out and he enjoys it. I had good feedback from him when we got home and he couldn't wait to tell his news to my daughter. Fingers crossed!!