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!!
SuzieQ
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SuzieQ
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It's great that you both feel so positive about the daycare unit. It means you can relax in your few hours apart in the knowledge that Tony is in safe hands and enjoying himself. Eddie's day is also a Thursday, he is greeted warmly by carers and clients, I don't get a backward glance when I leave and he looks happy and relaxed when I go back for him. What a difference 6 hours makes to us both. And Kathy is right, do something away from the house, feel as if you have had a proper break. The chores can wait!!
How wonderful for you and Tony with your experience of the Day Unit. The story of your husband running his own business and him previously being a fit guy before PSP struck, mirrors that of Richard, my late husband and myself. Richard had worked long hours for himself and had also been very fit. He loved jogging and playing squash. When he worked overseas in the Middle East and West Africa we joined the local Hash House Harriers (mad runners with a drinking problem).
Through Richard's Social Worker he got a place at a Council Day Centre which was run on similar lines to the Day Respite Unit Tony attends. Richard attended for just over two years and even when his condition worsened and he went into residential care, the county mini-bus would still pick him up in the morning and return him to the care home in the late afternoon. He absolutely loved it and always looked forward to going and meet up with 'the lads'.
Long may Tony continue to enjoy his time there, I'm sure it's going to make such a difference to both of you.
I never cease to be amazed by the kind words from those people who make comments on here. Thank you all so much for your good wishes. I will let you know how Tony's first day goes next week.
It is very reassuring knowing that you folks out there care enough to make a comment. Thank you from both of us.
What wonderful news for both of you. Hopefully the change each week will recharge the batteries and you will feel more able to cope with the unpredictability psp throws at us all.
Yesterday we managed to go out for a meal and the cinema in the evening and we had a good time. Life felt nearly normal for a few hours. These moments are now so important and precious to us. Today is more of a psp day.
Such good news It will do you both a world a world of good.
Don't forget to make sure you do something nice for you on Thursdays- lunch out, different shops, the library, hairdressers, swimming- whatever will boost you and give you something to look forward to.
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