My step mum has PSP and this post is to help my Dad through very testing times. She was diagnosed many years ago, I can't remember how many years ago but it is well over 10. They currently live in a ground floor private rented flat in Felixstowe, Suffolk. The main problem is my step mum has lost all use of her legs now meaning getting her about the house is extremely difficult especially as she asks to go to the toilet every one to two hours in the night. The worse part is he now has to physically lift her over a large step into the shower which is meaning regular falls for both of them. There is no way of getting a hoist in as this has been looked into and it is not possible to build a wet room shower either. It has been agreed that he should really go into sheltered/wardened accommodation or whatever the correct name is. However, the problem is the process is horrendously slow and as this is having a severe affect on my Dad's health at this time, not just physically and mentally. My sister spoke to the Council today about it and the process is about 10 weeks until it is even looked at by a medical board. The attitude was a case of tough, just put up with it because that is the process. My Dad is also the type of person who just says ok to everything and certainly not one to try and getting anything more than his entitlements, but he does now realise moving is of paramount importance.
So, has anyone got any advice that may help knock on the right doors, fast track process's etc as the current timescales given are really not good enough for him as we are concerned of both his state of mind and his physical well being especially with the process of lifting into the shower he is having to deal with.
Thanks in advance for any help.
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tractorboy
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Sorry to hear of the difficulties your Dad and step mum are having. My first piece of advice would be to get step mum checked by her GP to rule out infection. There are meds they can prescribe to help reduce the irritability of her bladder. Would also suggest you call PSPA helpline ( if you haven't already done so) as they may be able to give you some advice about accommodation. The number is 0300 0110 122. Would she agree to just having a strip-wash until they move? Not ideal, I know, but it would reduce the risk for both of them. Do they have any carers/help from Social Services? Alternatively, in some areas local care homes or day centres will allow non-residents to use their bathing facilities for a small fee. Hope you get some help soon.
I found a local hospice was a tremendous help, following an initial assessment they not only provided care during the day twice a week but when my wife was unable to travel, alternative therapists visited us at home. Equally important they knew the way around the social services system and who best to approach i.e. the more helpful individuals rather than those who were less so. If you have a helpful GP service they should be a good source of support but that was not my experience. I typed Hospices near Felixstowe into Google and amongst them was stelizabethhospice.org.uk who appear to provide a wide range of services that may be helpful for you. I'm afraid it's a bit a lonely battle until someone with authority and resources recognises the difficulties those caring for a loved one with psp are having. Once in the system I found the social services team organised a wide range of help which, combined with the hospice help, made it possible for me to care for my wife at home. Another organisation that provided help with day and night time cover was 'Crossroads'. I had never heard of them and that is why you really need help from someone aware of the help available in your particular area and what funding is available. Hospices have wide experience in this area and I found their staff very helpful.
I hope you find the help you need soon, best wishes, Jerry.
Hi there I can't help with answering your questions specifically and I know there are many out there more qualified than me and give you lots of help with that. However, I had a similar problem with my Dad. We have a high step in then down into the shower. He got to the point where he could still stand up with assistance and maybe even take a couple of shuffling steps, but he couldn't make that step in or out of the shower. He was a tall man and way too heavy to lift. Moving or having a wet room were not an option for us.
Our solution was to buy a shower/commode chair and ask a joiner to come along. He went away with measurements and a note of the weight of the chair and Dad and came back two days later with a very strong ramp built to get the chair up and a whole wooden frame to sit inside the shower so there was no drop down in to the tray. The frame was slated specifically so the wheels of the chair would not go through but water could drain. It had a two small semi circles carved in to each side so it could be lifted easily but didn't have big gaps and it was angled perfectly so it was totally flat, despite the slight slope in the tray.
I had already had the shower doors removed as although Dad could always stand, he needed to hold on with both hands so I needed to shower him. In order to be able to get in to all the parts I needed to, it was better just to have the area open and to hold on to the shower head then turn the water off while I was soaping him up. This saved flooding the bathroom. The hole in the middle of the chair allowed me to get in from underneath to all the intimate parts.
It didn't cost that much here in Spain, I think it was 350 euros in total for both. It was a lifesaver for us. The chair was quite expensive but it was also a blessing. Toilet runs were only half the trouble as without the commode bowl under neath (which we never used) as long as you remembered to lower all clothing or pads etc you could sit him on the chair and roll him over the toilet, then back. It cut the transfers and lifting in half each time. It was also narrow enough to get through the bathroom door, which neither of his wheelchairs could.
Hope this gives you some ideas for practical help while you are trying to sort the other things out. We all wish you luck x
We also found that the wheeled commode, being narrower, would go through the door the wheelchair wouldn't.
Tony went to a care home once a week for respite and a bath, as he couldn't access ours, which turned out to be a good move when he needed to go into care permanently as he knew them and they were already aware of his problems and how to care well for him. Mo
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Julie
Hi-Dad diagnosed with PSP
Just been diagnosed 
