Hi everyone, I am new to this but am fuming about the way my nan and grandad are being treated. My nan does everything for my grandad because the doctors just want to put him in a home and as a family we want to look after him ourselves. A few years back when my grandad wasnt so bad he was given a barrier type thing to stop him falling out of bed, at the time he was still mobile and said he felt trapped so my nan sent it back to the nhs, now he cant walk, talk eat properly and falls unless you watch him constantly, which my nan does religioulsy. However the last few months my grandad has started to fall out of bed and last night was a bad one ( my nan has to sleep sometimes) and he has bruised all of his face, my nan has called the health people this morning and has been told that they wont give her the barrier back as he has gone too far and might try and climb over it, in the same breath they also wont install a stairlift for the same reason, why wont anyone help them??? Apologies for the rant. Has anyone else experienced the same problem with climbing over the barrier? If not I will buy them one myself
Falling out of bed: Hi everyone, I am new to... - PSP Association
Falling out of bed
pinkypoo well mate you have got a nice name ]] well i should get onto your local mp or councilor for the district and tell him what you have told us \\ see if he can get things rolling for you they have got to earn there money so let him sort it out for you i'm sorry about your gran and grandad and i think some people take advantage of us at times being an older great grandad myself they try and give you the run around i'm sorry that i could'nt help you but i would give it a go he will have more clout than you and granma and granpa but i should change your name first just kidding mate at least you have got it off of your chest a bit of ranting is good for you anyway \\ best oif luck with it and im glad that your trying to help your nanna and pa peterjones queenslaqnd australia psp sufferer
Pinkypoo is the nickname i have had for 32 years, my grandad even made up a song when I was a kid. I not bothered about getting things for him from the NHS etc, I can do it myself its just the 'nothing we else we can do attitude'.
its a good name do not change it mate\\ i know what your saying i know they do not have a good attitude and think they can walk all over you sometimes \\ well mate im off to bed its 11 ----27 here so goodnight pinky poo thanks for your em keep on this site its good for letting your hair down you will probably get some other comments a little later on take care peter jones queensland australia psp sufferer ps give my regards to nan and granpa for me
Good night Peter
Hi Pinkypoo...it's a fun name to say or write
Sorry I have no advice for you on this one; I live in the States and we have our own share of health care pains-in-the-neck. But as you said, and if you're in a position to do so, buy one yourself; far less frustrating and will keep your grandad safer, at least for now. And give both you and your Nan more peace of mind.
This site is the place to rant if you need one; uh, have posted my share and I'm newish to this site but don't know what I'd do without it. I'm in in the earlier stages of PSP but am also aware of how hard it is to be a caretaker.
Don't forget to take care of yourself, too.
Best regards,
Judy J
MN, USA
Dear Pinkpoo (Yes, I was amused to read your name as well!)
Unfortunately I can let you know that your grandfathers situation is not unique. You have begun to find out that you (or someone else) needs to strongly advocate on your grandparents behalf. Emphasise that their lives are as equally important as any other and they deserve care and attention and support to live a quality life in their family home. For us (each person is different) - Side rails (with an electric bed in our case) for my husband's use have proved invaluable over the years. Some times both rails are used, sometimes just one, sometimes none. and yes, before we purchased them with the electric bed I was informed that John may well climb or roll over them (which 3 years after purchase I am yet to see). So perhaps they are suitable for your grandfather (It seems with this illness - who knows til you try..and what works one week may not work the next , but it may be of assistance later again. yes - it is confusing)
My husband does not fall to the ground without warning when standing (which is apparently is not usual (?) for people with PSP but feels a strong magnetic pull) However he does a funny sort of fall/roll/lift/flick/drop/flop!!! to get in and out of bed. (he goes from paralysis to moving - yes weird and unexplainable!) John is also going to great lengths to maintain his independence - so I presume this maybe the reason for it. Most of the time he "sorta" gets out of bed at the right time and the right way (wishful thinking through rose coloured glasses on my behalf perhaps)... However when I found him after the first bad fall happened (John did his 'roll' out of bed unaided & hit his head and much of his body (somehow!) on the bedside table) I just cried for hours wondering how I should have done things differently. Fortunately I got out of that mindset (otherwise life would have been eternally miserable) and decided to adopt a much higher level of self confidence & motivation. Now whenever any service/piece of equipment is declined - I go back and question and reiterate how important I feel it is to obtain- and question...how, why, when, who, which, when etc. I ask why not and how I can change the outcome. I ask for workable 'real' alternatives based on my sense of what is necessary and what my values are. To date it has worked out, mind you I do sometimes have to hammer the door quite a few times - from different directions and methods too!
So I suggest as your grandparents are not getting the respect and responses that they so richly deserve - a bit a perserverence with someone or some people acting on their behalf (as a third party advocate including visits and/or makes phone calls/letters/emails) may well help them get the right level of support & equipment they require.
As the Americans say make your voice heard and "Play hardball". In Australia it is "be bloody minded' and the UK...............................(Sorry I you will have to tell me the slang term to use...)
Regards,
Alana from Western Australia
(yes.... I do write a lot........)
Are you or your Grandparents members of the PSP Association? If so ring the Helpline on 03000110122 -- I am sure they will be able to advise you -- if you,or they , are not members , join, its free and then seek help from PSPA.
We had to do this for mum as she was very active and always waited till people were out of the room before attemptng her escapes. One of the reasons I had to get her into 24 hour care in the end as I was exhausted . The care staff worried that she would climb over but by then she hadn't the strength to physically get over them even though she would often dangle her leg over as if she was trying to get out. Although mum would say she was trapped and complain about them she accepted them in the end and I definitely felt happier knowing she had them as it is physically impossible to watch them 24 hours a day.It is worth reminding professionals that this is not dementia it is PSP and a reminder like bed bars is sometimes all that is needed to stop pw PSP from getting up when you are not there. There are motion sensors you can get and I would strongly recommend theses so your Gran can relax a little. Somebody must also help her to start applying for Continuing Health care as soon as possible as this falling out of bed in the night behaviour will certainly rate highly as a danger issue.The money would certainly help in the purchase of items like bed bars and sensors or even night carers.All the best,
Dianne x
I got help from the nurse at our doctors practice, it took a while and various bumps and bruises, between asking and receiving the bed. It was a hospital type bed which went really low and quite high. If the person was apt to climb it could be left at the lowest position for night and raised for getting up in the morning. Much easier to make the bed when it raises. The head and foot also operated independently. The mattress supplied was very well flattened and the base could be felt through so I went back and pointed this out. The practice had a comunity fund and a new one with much firmer but still soft topping was purchased by them.
You have to keep asking for what you need.
I also purchased a 90cm wide pillow, to prevent the head getting wedged between pillow and bars, because these beds are wider and longer than the standard single bed. Lidl sometimes has stretch cotton sheets which are a very good fit for this size and only cost about £5.00 ea. Wash and no need to iron also tumble dry very well.
The pillow I got from Dunelm Mill was memory foam ( don't think they do M.F.anymore) but they do a basic one also do cotton pillowslips to fit.
Hope this info helps a little bit.
Thank you for your reply, am a little overwhelmed by all the responses. I am just so frustrated with the lack of answers from the NHS and general healthcare professionals, we have diagnosed my grandad oursleves as the doctors put his symptoms down to dementia even sending him for surgery on his eyes to stop them watering from the outer corners, also he is unable to look down and prior to be ing completley unable to walk he was constantly falling backwards, now he struggles with his speech and swallowing. My sister and I take him out every Saturday to re-live all of our youths, so far we have been to the zoo, safari park every park and nature reserve in the local area, we have 'posh coffe' as my grandad calls it and generally drag him round in his wheelchair everywhere we can and quiet often places we cant ( we have been known to attach scarves to his wheelchair and drag him off-roading up hills teehee!!)
You need to find a doc that will give a proper diagnosis. Get a referral to a Neurologist or movement disorder specialist. Perhaps with a proper diagnosis you can get the help you need. It does sound like your sister and you have made an accurate diagnosis! And keep off- roading!!
joan
Hi Pinkypoo. Your last post made me chuckle My Dad has PSP and they live in Solihull, UK. I now live in Canada, but am heading home in May for 3 weeks. I keep teasing my Dad and telling him he is part of my keep fit regime, as I will be taking him all over the place in his wheelchair. I've even told him I've been practising, so I can do wheelies with him! Hahaha. Although we don't see the "old" Dad very often these days, he is still in there, and occasionally his sense of humour shines through. Take care and I hope you are able to get a bed guard for your Grandad. My Dad has one and I don't think he has ever tried to climb over it.All the best, Karen
Hi Pinkypoo
I asked for a bed rail for my mum. She was assessed by Occupational Therapy who said it was inappropriate and unsafe as she could get her head, arms and legs stuck in it which was more dangerous than falling out of bed!!!????
If either of your grandparents were in the armed forces they can apply to SAAFA, The British Legion or the RAFA for help. I applied for a wheelchair, riser recline chair and a Mangar Camel (a device to get mum up off the floor when she fell over).and got all three! If they weren't in the forces but were in a union at work they can apply to the union's charity arm who can also help. They just have to prove union membership.
I am currently trying to get a suction machine for my mum as she has excess saliva which causes her to choke. I've been told that it is not NHS policy to supply them in the community for health and safety reasons! They prefer to rely on drugs (Hyoscine) to dry up the saliva. This has only partially worked with mum as she is still choking, not as much, but still choking.
I hope this info helps you
Take care and best wishes to you and your grandparents
LizzieF
Hi Lizzie,
I'm not sure who told you that suction machines aren't supplied in the community but it sounds like a "cop-out" to me!! I know for a fact that there are loads of community based suction machines (although I admit it is often for children with cerebral palsy).
I would go back and ask again! Make a nuisance of yourself if necessary!! 
Take care
Kathy
Hi Kathy.
Spoken to various different local healthcare professionals:PDNS, Dietician, GP, District Nurse, SALT, Physiotherapist all of whom said they didn't refer for suction machines and passed me onto the next person. I eventually spoke to another DN who told me they do not supply them in the community, she checked with the local Hospice and they don't either. I contacted the PSPA and got a phone call from them on Thursday confirming that they are definitely not supplied in the community due to health and safety issues i.e., damaging the oesophagus and trachea in non-medical hands. Thats why they prescribe Hyoscine patches (Scopalomine - a truth drug used by the Nazis in WW2). She said I could buy privately but they are expensive, so unless I get another grant from RAFA or BL I will have to continue with the patches. So thats the end of that apparently, don't know who else to ask.
Lizzie
Hi Pinkypoo,
If the health people continue to refuse to provide the barriers ask if they would be willing to swap the bed for a low-entry bed instead. This type of bed lowers (electrically) to within 6 inches of the floor - although it may not stop Grandad falling out at least it will reduce the height he falls and, therefore, reduce the risk of breaking bones!
If they do a "U-turn" and agree to provide the rails make sure they also provide the padded "bumpers" which will prevent Grandad getting his legs/arms/head stuck in the bars.
Good luck!
Kathy
I found that because my husband sweated a lot in be, the bumpers did not allow air to circulate ( he was already sleeping on a waterproof matttess) I made mesh sides with velcro fastenings which were great. Stopped him trying to lower the sides of the bed, kept the arms and legs from getting trapped, but allowed air to circulate. You have to be inventive.
My Beautiful Nan
hi everyone need some advice my sister and me are pulling are hair out this last 10 days,dad had psp about 3 years which in his case is 
Dad is finally free
Quality of life?
My husband is coming out of hospital today and I am scared I will not cope.
