My question is, is there such a thing as assisted or adaptive living properties that one is able to rent. We are currently renting from a private landlord as we have a place to sell in Cyprus, but until we have sold we cannot buy in the uk. The property we are in is a ground floor flat but not really cut out for the help we are going to need.
To make issues worse although I am considerably younger than my partner, is am registered as disabled following a spinal cord injury so am not supposed to try and pick my partner up after falls, do the hoovering, ironing etc.
Currently feeling overwhelmed by the thought of psp and just need some advice.
Many thanks.
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Gadgetgeek
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Hi Gadgetgeek, this seems a fairly unique situation and therefore can't speak from experience. All I can say is when I needed help resolving a problem those who were best informed about local resources, and motivated to help, were hospice staff and local social care workers, some from social services and also care providers like 'Crossroads'. They couldn't necessarily provide direct assistance but because they were out and about in the community were aware of available facilities and could suggest avenues to explore.
Sorry I can't be of more help but I suspect the situation will vary depending on your whereabouts in the country. The PSPA may be able to direct you to local sources of support they can certainly provide you with a great deal of information on the disease itself. Their helpline number is 0300 0110 122. Kind regards, Jerry.
Thanks for your reply, I'm planning to ring social services and the local council on Monday, we live in the New Forest, Hampshire. Fortunately the consultant and our GP are very supportive which all helps.
Hi, sorry to hear that your partner may have PSP. Stay on this site, it will help enormously. We are all carers, like me or sufferers with PSP. We will tell you how it really is! This is a very rare disease, which nobody has heard of, especially the medical profession. Join the PSPA, they will send loads of liturature, including leaflets that you can take when you need to see anybody. Dentist, optician etc.,
If you have probs getting your partner up off the fall, I suggest you start practising. I never lift my husband up. When he falls, he hasn't a clue how to get up. But with practice, I have been able to teach him. Basically, get your partner to lie on the floor, roll over, so they can get up on to their knees, then crawl, or reach up to a strong piece of furniture and heave themselves up. You may have to guide him or help with a bit of balance, but you shouldn't need to actually lift. This works for us. If this is no help, get a physio or OT involved, they will be able to help you.
S always needs me there when he falls, as this practice only helps him if I am there to tell him what to do. He still can't do it for himself, but at least I'm not doing any damage to me and it boosts S's confidence that he knows he can get up!!! It's good physio exercise as well!
If I have to go out and leave him, I try to have a practise run, so it reminds him what to do, if he falls when I'm out! Gives me a small peace of mind, not a lot granted. But small is huge in this PSP world! Thankfully, to-date, we haven't had to test it, or else, it's worked and he hasn't told me!!!
As to your other problems, you will have to get social services involved. Speak to your doctor, now! Not six months down the track, when you can't cope. Don't let things break before you get help, it's harder for them to pick up the pieces. It really is the simple things that help the most, so may be get a cleaner in for a couple of hours a week. I would be in a lot worse state, if I didn't have that help! Life is going to be hard from now on, so try to make as easy as you can NOW. You will find that you will be able to keep a relatively "normal" life for longer!
Most of all, stay on this site!!! We will all help get you through the bad days and share the good ones. It may not be best the Tee Shirt to wear, but we have all got it on, so know EXACTLY what you are going through!
I can see this is going to be a steep learning curve. How did you get a definitive diagnosis, from what we were told yesterday a medication is going to be prescribed for a trial period and if we notice a difference it will be PSP if not the it will be down to the sub cortical white matter stroke disease which we've been told she definitely has, but may well have the PSP on top.
She goes to two postural stability classes each week, and uses a 4 wheeled rollator when we attempt a walk, is PSP fast progressing eg should we be thinking wheelchairs etc?
As for getting up from the falls, We've been shown how to get her up but in practice it's been very difficult, as the falls rarely take place where there's plenty of space, so turning and getting on to knees near impossible, but as I had the riot act read to me by my GP this week I am no longer allowed to attempt to lift (I'm not supposed to try and lift anything heaver than half a kettle of water!!)
I shall be taking your advice and start making calls on Monday to get the ball rolling.
Thanks for your suggestions, they've been a real help.
Hi, for lifting, there a gadget, sorry don't know name, but you slide it under the person, then pump it up until it's at a height they can get up from. I have heard used in all sorts of positions, some were very trying!!! Maybe, your doctor will know or the Neuro physio!
Best of luck with your calls tomorrow, don't forget there is no such word as NO and no place for, sorry can't help!!! Only tell people the worst case scenario, not what happens on a good day!
Nobody gets a definite diagnoses, that can only be done after death, but they just go by symptoms. Unfortunately, the doctors change their minds every other visit, so be prepared. The bottom line is, your loved one has something wrong and you have to care for them. All these conditions are basically the same and there is no medication that can cure. Some do help with the symptoms if you are lucky.
As for a wheelchair, I rushed out and bought a second hand one a few months ago, S had a really bad day. It's been useful, have used it a few times. I feel it's there, like an insurance policy. Again, talk to the OT.
Sorry, but that's one of the saddest thing of PSP, the brain stays very much alert. So no memory loss, unless there is another condition as well as PSP. People presume that, because the sufferer is slow to answer, or can't talk, they have lost their mental capacity, but inside, everything is still working, they just can't communicate. I think this is what really frightens me with this disease, S not being able to communicate. He struggles now, so I dread what's coming!
I'm sure if you Google "assisted living rentals" you will get some prospective responses. Perhaps adding "in UK". Sorry to hear of your struggle with PSP. Having a bad back is the worst thing a caregiver can have. There is something called a Hoyer Lift that I used for my wife. You can move them from bed to chair or wheelchair, even to shower. They have two slings and one has an open bottom so you can tend to that part of the person's body. Hope this helps. Jimbo
Hi Jimbo thanks for your reply, yes have googled and have a number for New Forest District Council so they are on my hit list for Monday morning.
Yes, the poxy neck is a real pain, I stopped G falling in the week and really pulled it which has highlighted that we really do need to think of getting help.
I've also googled the Hoya lift which looks like a great bit of kit, unfortunately I don't think fit would fit into the accommodation we have at present, but fits in with my idea of what we could have if we had our own place.
Lift fits through normal doorway. Will roll under beds and up to chairs. You leave the sling under them so you just reconnect sling to lift and roll to next location. Jimbo
Hi jillannf6 many thanks for your reply. We are fortunate that we have a fantastically supportive GP. Have made an appointment to see her in a couple of weeks and the consultant that came yesterday also seemed very good. Lots of calls to make next week to start the support ball rolling.
Gagetgeek, ny partner's PT recommended a lifting belt. You can find one online. Ours is padded and as wide as a weight lifting belt but with loops that you can hold on to and pull. The big thing is for you to pull them not vice versa.I am sorry you are dealing with this but if it is any consolation you are not alone:). JG
Hi Goldcap, many thanks for your reply, G can get up from the chair and bed at the moment, we bought a bar/handle for the bed that aides getting up from the bed. With my neck in such a bad way I really can't afford to do any pulling as the risk is too high for me to further damage myself.
This forum has been a great help, the internal panic I first had has gone, can't thank everyone enough for responding
Welcome, but sorry you have to start on the journey.
Falls - In the UK the ambulance service can send a first-response paramedic (occasionally there are two) to assist (sometimes I think they are relieved it's a "simple" problem). I had to call them a couple of times for my late husband and they were quite happy about it.
In fact, the paperwork they leave with you might just come in useful if you are having a battle to convince someone about the difficulties a fall can cause.
Above all, accept all help offered - it sounds as though you are already aware that you need to look after yourself as well. In time, consider a night sitter, to give you a good night's sleep.
I have recently discovered that the Macmillan organisation helps people with other conditions, not just cancer, so that is another source of contacts.
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