Tips... might be useful

[msomaya]

We ( hats off to my sister for it) managed to make modifications for dad in the house to make sure the falls were avoided.. and many other things.. my dad wasn't the easiest PSP patient to handle.. the disease makes them unmanageable but his nature from the beginning was the one who liked to defy everything and absolutely fearless

1. Initially due to the rocket motion that PSP patients suffer from (to suddenly get up and then lose balance), we had bought a chair with armrests and put a wooden plank on the arm rests with locks.. so it was not possible for him to get up without someone being around.. this also served well for serving him food as he used to eat on his own during that phase.

2. we had put railings for him to hold on to in the corridor and in the bathrooms. We noticed that while walking if he had something to hold on to then it would prevent the fall.

3. All edges and corners in the house had been covered with foam. So that the house didn't look shabby we covered the foam lines with a black leather and stuck them with glue. this ensured that even if he fell the chances he would get cut badly was avoided. we had also put foam on the wall where his chair was kept so that if he were to hit the head to the wall, it wouldn't hurt as bad. So also in the bathroom there was foam on the commode chair and on the wall where was a possibility to hit his head

4. the bed as in the picture was specially made for him to avoid falls. initially we just made it high enough for him to not fall off the bed. and doors with locks as he insisted on getting up and leaving the bed

on his own. later he always tried to take keys to open the locks on his own so that he could again get up on his own so we had to make sure the keys weren't within his reach. So once he tried to jump over the high walls and had a bad fall .. he got up on the bed and would have almost hit in his hand on the fan above. hence we sealed up the top. He was the lion in the cage and hence he did become aggressive and used to try and hurt mum when he could.

5. When he was hospitalized and a catheter was inserted, he pulled off the catheter and bled badly. the hospital guys then tied him up. It was horrible to see him in that state hence we decided to buy Dog neck cones and put it in his hand. that avoided the fact that he could pull off anything and also he would not be tied up

6. We did not use the Foley catheters, instead every 8 hours the lose catheters were used that ensured there was no urine infections.

7. Last, of course, the anti slip mats in the bathroom and just outside the bathroom helped a lot too

From the bottom of my heart, I pray to God/universe/nature/whatever that could be, to give strength to all PSP patients and carers in the world and to all patients/carers of all terrible diseases.

My dad was a warrior who fought this lost battle till his last breath! he taught us not to be weak and cry over silly things in life!

PS. It allows me to add only one image. The image of the bed is in my other post anyone in Mumbai.

[easterncedar]

Thank you so much for taking the time in your grief to think of us and to offer your good advice and example and prayer. Clearly you cared deeply for your father and worked hard to keep him well and safe for as long as possible. You are a warrior, too. My most heartfelt wishes for comfort for you and your family, Easterncedar

[msomaya in reply to easterncedar]

Thank you Easterncedar.. <3

[NannaB]

Thank you for some very good ideas and for your prayers. I have done all I can to make the house safe but couldn't consider restraint or "caging". Instead I have cameras and a monitor so I can see if he is on the move and usually get to him on time, not always but I know he is happier to have freedom with risks, than to be restrained.

I hope you and your family are coming to terms with your loss and that soon you will be able to enjoy life after PSP.

Nanna B

[msomaya in reply to NannaB]

Thanks nannab that's true.. My dad was also furious and we didn't think of the camera option. Since we have tiles, the chances of a hip fracture were very high with falls and not sure what would have been better.. But I certainly agree caging was not a good option.. The docs had suggested tying him up and this was our modified version of it. Guess it's always good to share as under stress most people don't end up thinking..

And honestly we are glad that dad isn't suffering anymore. The last few days weren't bearable to see him so we can't imagine how he was feeling.. The loss will remain but we are at peace that he is no longer suffering

[cabbagecottage in reply to msomaya]

what sort of cameras do up you have Nanna , I have just had a HIVE installed .

the room John is mainly in gets extremely warm when the sun is out ,very difficult to control when the keeps going in and out , He needs to be kept extra warm but obviously not over warm .

now when I am away from the house I can check my Mobile phone and see at a glance the temperature in the room and turn it up or down . it even sends me an e mail if it gets past a certain level . either too hot or too cold , Only just had it so will let you all know how it goes .

[cabbagecottage in reply to cabbagecottage]

I wonder if there is such a ting where I could see him at all times . talk about big brother lol

[zjillian]

A beautiful note...what good things your family did for each other!!!

Jill

[Hidden]

Your dear father was indeed a lion and you and your family were also very brave in the decisions that you took for his sake.

Christopher

[Doglinton]

Sorry for your loss .Full of admiration for your father and your creative responses. Thanks for the ideas to cope. Jean

[jillannf6 in reply to Doglinton]

DITTO LIK E JEAN ABOVE

LOL JILL

HUGS AND XXX OT YOU ALL

[GonnaMissDaddy]

Like the others I really admire all your efforts for your dear Dad. You most likely spared him from the physical pain of a broken hip and Lord only knows what else. Many times I've wanted to wrap Daddy in plastic bubble wrap but your actual solutions were much more realistic and do-able. My dad is no longer able to get up on his own, so the falls have stopped but as you know, in the bigger picture that's not good. I'm truly sorry for your loss and for all the heartache you endured on the way to that loss. It's a hard road to travel but we have no choice. We relish the happy moments and treasure the memories for always. Hugs to you.