My wonderful dad xx

[tobin1972]

Hi my names Claire and I'm new to all this. I got such great comfort from reading many of your posts. My dad has been suffering for a few years with lots of falls and a few other symptoms. He has not been well for a long time now and been back and forth to hospital. Yesterday he was diagnosed finally with psp.... It came as a shock. Don't get me wrong I'm glad we now have answers, but sometimes ignorance can be bliss. That sounds awful I know. It's been so hard watching him struggling with everyday life. He can't really walk now and is struggling with swallowing and choking. I know we have far worse to come. Nobody likes to see loved ones suffer..... He is my dad... He is my world xxxx

[Heady]

Hi Claire, sorry you have had to join this wonderful site! You will find it a great help. We are all Carers, like me, or sufferers of this terrible disease. So we tell it how it is, no frills, no sugar coating. We all share the good, (there will be some!) the bad and the ugly! Support is given when you are down, advice, when lost, most of all, laugh at the funny moments, that probably the outside world will think wrong!!!

I think you will find having a "label" on your Dads condition, will help. I know in some ways, it has taken away any hope of a full recovery, but at least you know now what is wrong, you aren't all going mental, trying to describe some of the more quirky symptoms of PSP. Not that anyone will know about this illness, especially the professionals.

Are you in the UK? If so, join the PSPA today! They are an enormous help! Sending leaflets to you and also, request some for the professionals, so when your Dad has to visit the hospital, doctors, opticians etc., they can have a quick reference to the disease. Also you can get little cards from them, size of a credit card, which gives a very quick explaination of the illness. Some good doctors, actually attach these to the medical records, (not mine!!!!)

Please ask any question, don't think, just because you are new here, that your worry might be trivial. Nothing in PSP is trivial!!! This is a world wide site, so someone will be on the page, no matter what the time of day. Helps on sleepless nights. We all earn and wear the same tee-shirt, be it yesterday, today or tomorrow. Everyone rants, raves, kicks and screams on here. Nothing you will say, will offend anyone, we ALL feel the same way. PSP sucks big time, we all hate it with a vengeance. Anyone of us, would do anything to relieve the symptoms our loved ones are going through. We can't, therefore we all come on here and scream!!!!

Are you your Dads main Carer? If not, get who ever it is, to join us as well. You are not alone in this new world, you suddenly find yourselves in. You have a brand new family to help, loads of shoulders to cry on, to nag you, when down. Basically, Claire, we have your back!!!!

Lots of love

Heady

[tobin1972 in reply to Heady]

Thank you so much for that lovely reply. It means so much to have other people around who know and understand. My mum is my dad's carer. I go over every other week. She does a amazing job and has the patience of a saint 😇 We are based in the UK yes. Thank you once again for your lovely message it means so much xx

[Heady in reply to tobin1972]

Hi Claire, I'll let you into a little secret. Your Mum will not be thinking she is doing an amazing job, she would laugh, thinking that she has the patience of a Saint!!! We all lurch from one crisis to the next, no time to catch our breath, no time to think. Sometimes, I think that's what keeps us going, not really knowing what going on, too busy just doing!!!

Your job, is to keep her sane and rested. Make sure she has some time off, if you are able, look after your Dad, so she can get out, or go away for a couple of days. I know this isn't always possible. There is no way, my Dad would have let me take care of him. But S, my husband, PSP sufferer, is quite happy for my daughter to care for him, but she was a trained nurse, so more than capable of doing what is required. Has your Dad got any help coming in? This is very important, especially for your Mum. Another secret, when we ask for help, we actually needed six months ago!!! Try not to let her get into that position. Impossible task, but you might be able!!!

Most of all, listen to all the advise you will be given on here. We ALL have learnt the hard way, the sad thing is, so will you! But if we can save you from one pot hole, we will try!!!.

Lots of love

Heady

[easterncedar]

Hi, Claire. I remember very well the shock of the diagnosis, and feel for you. I have learned after 5 years that it is far from the worst thing that can happen, hard as it is. You can still be with your father and there can be good times and loving moments. Hang on. Keep in touch. Peace, Easterncedar

[Fiddle]

Hello Claire, I completely understand how you feel, we had my dads diagnosis 2 years ago now and it was the same for us. I found this site really helpful at first, then I got information overload and it scared me to death, so I now dip in and out of it as an when I need to. There are lots of wonderful people on here that can answer any of your questions, sadly they all have first hand experience. All I can say is treasure the small things, and also if your mum is caring for him, give her as much support as you possibly can, my mum has really struggled through it all.

Wishing you all well

Fay

[Doglinton]

Hello, Claire,

Welcome. You will find great support here.

Its hard seeing your parents struggling.

When my children come over I really like them to spend some time talking to their dad but I also really like having some time talking quickly, laughing - about the world I was part of and now so often feel isolated from. I don't want to describe how awful it is or be told how wonderful a job I'm doing. I want to feel normal.

So its quite difficult for you as well. I know my children find it so hard seeing their energetic father as he now is. They are loving and supportive and we all do our best.

Here you can dump your pain.

Love, Jean x

[Mollymop66]

Sound very similar to what we have gone through with dad.

A horrible illness 😢

[Lieve]

Hi Claire and welcome!

I'm helping to look after my dad too - breaks my heart to see him now and how he was before. But since that is totally not helpful right now, I concentrate on making him comfortable as much as I can, getting drinks, warm his cherry pit pillows for his freezing feet, waking him up in time to catch the end of a cycling race on tv (since he can't stay awake for long), showing him pictures of his grandkids... and adding a dose of humour in as well. As long as he can still manage a smile, it warms my heart. Little things to get through the day. I hope this snow and ice will go away soon so we can get back into the garden - it won't be long before he can't use his walker anymore.

I think the hardest part for him has been to give up what he used to do (active nature walker) and slowly slip into this new life - giving up things day after day.

Giving you a glimpse into our lives to know you are not alone and you being by his side, whenever you can, will mean the world to him!

Love,

Lieve

[allany]

Hi Claire sorry to hear about your father. This might seem east to say (but I am a sufferer of PSP and a father) stay strong there is a lot of help out there so make sure you use it. Your father is entitled to have an assessment by your county council to look at his needs (and those of carers)and fund any help they deem required subject to your fathers income and savings. Also useful is that if he qualifies for this help the money can be paid direct to him so he can employ a PA(personal assistant). There is an opportunity for him to have CHC (continued health care) provided by thr NHS.

The above will not slow down the progress of your dads illness but it's time to get the practical side sorted cause your love will always be there.

Take care of yourself and look after your health.

[tobin1972 in reply to allany]

Thank you so much for your message. I am so sorry to hear you suffer with this awful illness.

My thoughts are with you

Love

Claire xx

[Julieandrog]

hi claire

our daughter is 34 i am not sure if you are around that age , but she loves her dad even more than ever, it is odd but as the disease progress fairly slowly you get used to the changes, look after your mum! our neurologist was very good and said any member of the family could see him so might be worth exploring if you have questions you want answered by yourself. the only sure thing with PSP is that it is progressive but not predictive.

everything will be ok my love

julie xx

[tobin1972 in reply to Julieandrog]

Thank you so much for all your lovely messages. It really does help me in this new world I have found myself in. Lot's of love to you all xxx

[jillannf6 in reply to Julieandrog]

HI claire

welcom2 the site

but sorry

you have had to join

lol jill

xxxxx

[tobin1972 in reply to jillannf6]

Thank you 😀 xx

[tobin1972 in reply to Julieandrog]

Hi Julie, Thank you for your message. I am 43 I go over to my parents every other week from 8.30-5.00 each day. I really do find it hard watching him struggling with this awful illness. His speech has pretty much gone, although oddly enough him called me a pig last week which was very clear (I wouldn't let him have the phone) We do love to see him laugh which is so rare.... Although he found it very funny when he tried strangling me with my scarf

Take care

Claire xx

[AmandaF]

Hallo, Claire,

I'm so sorry for you, your father and mother.

You've got to live in the moment now, taking comfort from every minute you can spend together. I hope you both have the opportunity to talk and enjoy each other's company for many, many months ahead.

Thinking of you and sending you good wishes.

Amanda.

[tobin1972 in reply to AmandaF]

Thank you Amanda. These messages really do help.

Love

Claire xx

[Fiona13]

Hi Claire, I am Fiona and have a very similar story. My dad was diagnosed late last year after a few years of having falls, balance problems and eye problems. He is on a special "mashed" diet and thickened fluids to help with swallowing/avoid choking. He can't walk or stand any more.

He was hospitalised in September with pneomonia and is still in hospital now although hoping to come home in next few weeks. I really worry about him going home, as mum died recently so he will be alone, although we will be getting the maximum care package (still only 4 visits per day). I dread the next stages of this disease, as you do - hate to see him suffering and struggling daily. He used to be such a big, strong man.

I dip in and out of this forum as something new happens.

F x

[tobin1972 in reply to Fiona13]

Hi Fiona. Thank you for your message. It's awful isn't it 😔 I know I have worse to come, but I am finding it very difficult to cope with at the moment. I know I need to man up and be strong, but it's really hard to do when feeling so low.

I hope your dad comes out of hospital soon, that's been a long time for you. It's hard being a grown up at times 😵

My thoughts are with you.

Take care

Claire xx