Driving impulses how do we control

[Chrissmitch]

What a Christmas, Horace enjoyed his Christmas dinner with my family at my daughters house although it was difficult for us all getting him up and down off a normal couch and upstairs toilet but the eldest grandson was brilliant and took over these duties which gave me a little time off. At 4pm he was tired so wanted to go home, his own two Daughters were coming round to our house to sit with him so that I could go back to the party at my Daughters, they arrived at 5pm so off I went. At 7pm I had a phone call from a neighbour saying they had called an ambulance for Horace as he had fallen outside our house taking the dog a walk, his daughters only stayed for about 40 minutes and left him on his own. It was pouring with rain and it appeared that he had been down for about 15 minutes before anyone spotted him, the medics waited until I arrived back but insisted that he went to local Hospital so we were there all Christmas night and at 12 midnight they decided he had to be admitted. I phoned early Boxing Day to see how he was and the sister on the ward said he was very confused and they could not calm him down, I knew he would not be confused and it would be them that did not understand his needs, I suggested I went and could help she was very off hand on the phone and more or less said why could I do better than them but I went anyway. On arrival he was tossing all over the bed and trying to speak. I soon realised he was not comfy got him out of bed changed him into his own pjs made the bed how he likes it and hay presto all was well with him, they were treating him as if he did not understand what was going on and obviously had never heard of PSP, I found this very alarming, when I explained all his problems they said o well take him home there is nothing we can do for him . So a smiling Horace staggered out to the car but by this time Christmas was over for me and I now know he needs 24 hour support to keep him safe or he may get the urge to go sky diving or something equally as dangerous if left to his own devices

[NannaB]

Oh dear! I hope you let his daughters know what happened. I think I found that time just before the 24 hour support the most difficult. It's when my darling fell in the pond, fell through the greenhouse and demolished the most furniture.

We had frequent hospital visits so I always went with a load of those little cards you can get from the PSPA and handed them out to staff who came in contact with him. I also downloaded info from the net which I gave to a doctor who said he had never treated anyone with PSP.

It's good Horace didn't break any bones but it must have been awful for him lying in the dark in the pouring rain. Making memories! Not that sort though.

Wishing you a very peaceful, uneventful end to 2015.

X

[Heady]

Hi, S suddenly started moving again, on Christmas Eve. about three times, he got up and appeared in the kitchen. Frightened me stupid! Thought I was heading for a session at A & E. Thankfully, It was only those times and hasn't done it since. I suppose he was just trying to be with me and my daughter, as I opened the Champagne! It was my birthday!!! Either that, or he was trying to see how quickly I responded to his new sensor alarm he has in his chair! I am sure he now thinks, because I know he is on the move, it makes it OK, for him to get up and go!!! Think Father Christmas should have bought me roller skates!!! (Thankfully he didn't, it would ended in tears!!!)

These so called professionals haven't a clue, have they? I had one come in the other day, she was shouting at S, as if he was deaf!

I have two step children as well, think you need to explain a bit more about PSP to yours. Mine are equally clueless about the illness!!! It makes me sooo cross. My daughter can and does anything for S, yet his children can't even pop in to see how he is, unless I make it happen!

Glad Horace is OK and you can go back to enjoying the peaceful time that Christmas is bringing. No endless stream of appointments! Oh the bliss! Just one blood test this morning and it's very soon, so I had better go!!!

Lots of love

Heady

[abirke]

Oh my. I am so sorry for both you and Horace. PSP, the unknown demon! I do hope you let your daughters know that dad cannot stay home by himself, especially if he cannot speak clearly. I like what NannaB said about the PSPA cards. I don't believe I've ever seen them but they sure woudl be handy!

Well A Christmas memory not soon forgot. I hope your daughters don't feel too bad , just more aware of dads needs...live and learn...

AVB

[Amilazy]

Hi Chrismitch, it is the case unfortunately that the only person you can trust is yourself, definitely let H's daughter know what happened but I expect he said "go home I am ok now", or something similar.

He will not remember he has fall issues M (when she was mobile) never remembedded and would be up and trying to do things and falling luckily never outside on her own.

There is no excuse though for bad care in hospital, get the cards that NannaB talks about from PSPA, I called them and they sent me 50 through the post. I have them in my wallet and hand them out like confetti to health professionals, Carers, friends, pharmacy anyone who comes into contact with M. I noticed that one of the cards was attached to front of her hospital notes last time she was seen by ENT consultant, it was noticeable from his questions he had read it.

Sorry your Christmas festivity was cut short hope you get some time for yourself.

Best wishes for New Year Tim

[abirke in reply to Amilazy]

Yah , I want those cards....what is the number please?

[Amilazy in reply to abirke]

It is a Brit charity PSPA try their website pspassociation.org.uk. I will try and scan the card for you. Probably CurePSP has a similar card.

I would expect the administrators to this site may be able to help.

Best wishes Tim

[Amilazy in reply to abirke]

Hi AVB use the link on previous Email pspassociation.org.uk then look up getting help then PSPA publications - publication list - general publications, item called "fact card". I would expect curepsp in States must have a similar item. If not maybe something similar could be suggested to them (probably not best from a Brit. Will try and scan the card and send copy as jpeg attachment as a direct message.

Tim

[abirke in reply to Amilazy]

Thanks Tim....

[Chrissmitch]

Thanks Tim I know that one word from me and Horace does what he likes, he still does not think there are any problems but can fall anytime if I am not just on hand to support him luckily he never seems to break anything but it frightens me every time and if anything happens to me I don't know how we would carry on so I suppose I am trying to be so careful to keep us both safe, this morning he said we wanted to take the dog out walking again, he can only go about 50 yards very slowly so I will have to get wrapped up and take them both all the way to next doors house but in this wind it will be difficult keeping him upright anyway I will try just to keep him happy and make him feel useful as this was the job he always did when fit, this illness has taken so much from him that I feel I must try and keep little things he can do going, does that make sense so hay ho, out we will go for a few minutes