Any advice?

[Aggie2018]

Hi so I'm new to this type of thing and I've never really talked to anyone about this outside of family before and when I try and bring it up no one likes to stay on the subject. I'm starting my freshman year in college and my aunt and I were the main caretakers of my father while I was home but now I've left and she has random military events she has to go too so I'm constantly worrying about wether or not he will be okay. We have a caretaker come during the day to watch him but the past two neglected their jobs and would fall asleep during it or leave early so I'm seeing wether or not a place to care for him 24/7 would be a good idea or not. He needs supervision while he eats because he'll choke fairly often if the foods not prepared right and he will lock up and fall quite frequently. I'm honestly just scared and trying to find others who understand this as no one at school that i know does. I apologize if what I wrote is confusing at all, all of its just really getting to me right now and I don't know what to do

[Aggie2018]

My father was diagnosed with psp, sorry for not mentioning that in the post

[Heady]

Hi Aggie,

PSP is an extremely evil disease, as you know. It's very scary, thinking of the future. The present is frightening, because of the dealing with the chokes and falls. With no help from any medication to deal with them.

It must be a nightmare for you to be away from your Father. But life MUST go on. Your father would be horrified if you gave up your schooling for him. That is not what he bought you up to do!

We all understand totally, the feeling of being alone with this illness. Nobody can know what is like, unless they have spent any time with a sufferer. Even the medical progression are clueless!!! So to be mixing with young people, who will not have had much experience with any illness, must be very hard. You must feel quite ancient compared with your fellow students.

You have found a wonderful site here! We are all carers and sufferers of PSP and are here to help one and other to get through this. Please stay on and "talk" regularly to us. You can rant, rave, cry, whatever you need to do. Someone, will know exactly what you are going through, we are all wearing the same tee-shirt, on some it's getting bit old and tatty, but that will mean, they have been through and come out the other side of what is troubling you today! So can give real practical advice! Or at worse be able to point you in the right direction to finding the help you need.

Is there any sort of councillor at your college? While they won't know anything about PSP, having someone you can talk to might help.

Yes, this is very hard for you cope with. BUT your education must come first! As I am sure your Dad would agree! You must keep very focused and remember "one day at a time", something we all HAVE to live by and something the rest of the world should do!!!

Lots of love

Heady

[goldcap in reply to Heady]

Well said Heady! Angie what if you arranged to keep an open dialogue with the caregivers? You could email or phone or even skype on a daily or regular basis. Just knowing someone was paying attention and checking in would make the caregiver pay a lot more attention. I know it is hard to not be there but I am sure he is so proud of you for being in school and I too think education is everything. That being said, ( and I might take flack for this), if your father is very far along maybe you could arrange to take a year leave of absence and be with him. Most universities allow accepted students to delay for a year or so and if you explained your circumstances you might even be able to take some course online while you take care of him. School will always be there for you but your Papa won't be.

You could always commute to a community or local college for now at least. Good luck to you whatever you decide.

Best GC

[shasha]

HELLO DEAR AGGIE HOW AWFUL THAT YOU CANNOT TRUST ANYONE TO CARE PROPERLY FOR YOU DEAR DAD -- I DONT KNOW WHAT TO SUGGEST I AM AFRAID HAVE YOU SPOKEN TO PSPA? THEY MAY BE ABLE TO SUGGEST A SUITABLE SOLUTION - DONT KNOW BUT GOOD LUCK AND DO KEEP ON LINE TO US A.LL HERE

LOVE SHARON

[jimandsharynp]

Finding good caregivers is difficult but if you keep trying you will find a "gem" eventually. I'd also begin investigating facilities now so you aren't stuck in a crisis trying to fine one. What I found with dealing with PSP is to be as pro-active as possible and think ahead. Make sure the facility knows about PSP and all that comes with it. This is important for your loved one's safety and good health. You should call on her friends for help. We are often afraid to ask others to help but I've found they are more than happy to help if only asked. I hope you will work things out. Hugs, Jimbo

[Greenbee]

I had caregivers for my husband for three years in my home. Eventually it was more than I could handle. I do have him in a care home now. It is a house with two caregivers and six patients. Finding a safe place is hard but so worth it.

[coyle51]

Hi, sorry you are having a tough time. There is lots of really good info and leaflets etc available from the PSP association which can be shared with caregivers and care settings to help their understanding of PSP. My mother went into a care home 2 years ago now, she was quite unwell and my brother was her carer which became totally unmanageable. Whilst it was very tough, it was definitely the right decision. Good luck but do persevere getting some help as it will give you some time to take stock and move forward. Regards Coyle51