My rock... my hero... my dad

To all of u out there battling with loving someone thru PSP I send big hugs. What a frustrating and confusing illness this is. So happy to have found this site and to feel there are others understanding the pain and frustration. Tough dealing with something so rare. My dad has been ill for a few years now after being the fittest dad alive!!!! Always so young and fit for his age so we all quite can't believe it's happening to him. It's been a gradual deterioration but the last two weeks there has been quite a dramatic deterioration. He is incontinent and has had many bad falls and isn't lucid for much of the time. Still praying this will change but not quite sure where we are in the timeline of this disease. My mother has been the most unbelievable wife and carer but from today he will be having full time care at home. He has been in and out of hospital for the last 9 months after breaking his back from a bad fall. He falls all the time now and so cannot be left alone... hence the full time care needed. We feel he will be happiest at home as he is very restless and sometimes aggressive in hospital. Praying for now that this will be the best choice for him. Just the best care, love and support.

[honjen43]

Welcome Hidden

[honjen43 in reply to honjen43]

Every time I hit the @ now I get shunted out!

You have joined the best group! There are more joining frequently so it seems like these rare diseases are not so rare! Hopefully it is also an indication that they are being better recognized.

It's a hard road ahead but you will have quality help and advice along the way!

Hugs to you, and your mum and your lovely Dad!

Jen xxx

[Hidden in reply to honjen43]

Thanks Jen... x

[Hidden in reply to honjen43]

Thank u.

[ssdw1958]

I will send prayers your way for everyone.

[Hidden in reply to ssdw1958]

Thank u.x

[doglington]

Welcome.

Its often noted here that something like an infection or disturbance to routine can cause a " down ". Often there is then an improvement - but not quite to where it was. We call it the " new normal ".

It is very painful to adjust to the loss of the energetic, youthful person. We all know how that hurts - and still does.

love from Jean xx

[Hidden in reply to doglington]

Thanks Jean... great to chat to people who understand.x

[Tippyleaf]

Welcome though sorry you have had to join the world of PSP. I hope the new care arrangements will work well at home. It is a huge adjustment having caters coming into your home so tough on all of you.

Take care

Xxxxx

[Hidden in reply to Tippyleaf]

Thank u. A huge adjustment indeed to have full time carers but so far she is awesome!!!!x

[Marg52]

Hello my husband also was a very active man till this horrible illness came into play, he fell the other day hit his head but so far he is ok. I am trying to take care him the best I can god bless our girls they are always resurching new things to try. But so far nothing is working he walks a little but is always tired. Having a good suport system helps your mom is very lucky to have you. It's a very good idea to have an aid help him it takes some of the pressure off your mom, sending hugs and preys to you and your family we are all in this fight together. God bless.

Margie

[Hidden in reply to Marg52]

Thanks Margie... family support and understanding is so important.x

[Noella21]

You are doing the best thing g for him. There is no place like home with the ones who love you around you. God bless you all and give you best care giver to support you all. We would not be able to do this without them.

[Hidden in reply to Noella21]

Thank u... so far she has been awesome!!! My mom is not feeling so overwhelmed.x

[Althea-c in reply to Hidden]

First day in 8 months that I have felt at ease with life. God bless Voyo she is a born carer. 💛

[Althea-c]

So pleased you have found this group. It really helps knowing one isn't alone.🙏