PSP Association
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Dad's just been diagnosed with PSP but deteriorating so rapidly he could only have 2years...

Hello, this is my first post, we noticed changes with my dad probably 2yrs ago but he maintained he was fine in the summer his year myself and my sister told him he clearly wasn't and got things moving with Drs etc, he was diagnosed just before Christmas and my mum (his ex wife) asked the dr outright how long then they said around 5 now since his follow up scan and appt Tuesday we've been told 2yrs and he now knows he is dying and he is not going to be able to continue looking after himself. He has lived on his own for the last 30odd years and has his own business (mechanised garden centre)

I'm just lost at what to do or think, I'm not yet 30 he isn't even 60 yet and I have 4 beautiful boys who adore their grandad and I don't know what to say to them, I don't know what to say to him as he won't talk to me or my sister anymore and the main thing is I don't want to lose my Dad, it wasn't meant to be like this

Nikki xx

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Oh Nikki, if only life could be a simple thing filled with love, health and happiness. Unfortunately we are hit with things that really make us challenge our beliefs and our strength.

I am sorry to hear about your dad, he is in the prime of his life and PSP put up a road block. It seems like your dad is a proud independant man, living on his own and running his own business is a testement to that.

Just as you are now trying to deal with this, so is he. Give him some space to process what is going on and maybe for a little bit you can offer help at his workplace.

If you can, talk to his doctor, sometimes that are able to get information and requests from their patients better than we can.

Bring your boys over to spend time with their grandad, I don't know how old your boys are but try and explain to them that things are going to change so they know.

Hugs

Paola

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Thank you, it's just so hard to know what to do or say and my sister is going into the practical, organisation route already! I know this needs to happen but it's tough, yes he is/was a very independent man, it hit him hard when back in August he was told he could no longer drive and now to be told you only have 2yrs to live, I just can't imagine what he must be feeling just by knowing how I am feeling.

My boys are 7,5,4 and 2 so I feel the older 2 at least need to be told something as they aren't stupid .

I'm so glad I found this site

Thank you x

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My foster grandson came to us just as it was starting to hit my husband hard. We told him that grandpa is sick, but that he cannot get sick from grandpa and what makes him happy are his hugs. If they ask if he is going to die , "not today". There are lots of books about death and dying for parents to share with kids; kids to read on their own...For them they will work it out, and most likely thy will be the least stressed about it all.

If you go to church they may have a program for this situation...or maybe someone to take the kids while you help your dad ...DO NOT BE AFRAID TO ASK FOR HELP.....If any of us have learned anything it's those words! ;)

AVB

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I have never been given a time frame for my mother in law, all I have learned about PSP/CBD is on this site and other studies.

If your dad is still somewhat walking and living on his own I cant see someone telling you he has 2 years to live with PSP.

As for your boys, I think you have to find a delicate way to let them know their grandad is going to change in the next few years, but noto treat him any different, he is and will always be their grandad.

I have onyl been onthis site for 2 months now, but it seems like an eternity. I have learned so much and offered support to those that needed it.

Sometimes just a virtual hug goes a long way...

Hugs

Paola

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NIkki . PZagy is right , give him time , It can take some longer then others to come to terms with .

Air your problems on here someone will always answer you

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CurePSP.org is a wonderful place for newcomers and oldcomers alike. It will give you answers to the why and how and who of the disease....and what you can do as a caregiver. Infact there will be a a Webonar for carers on January 26th.....this may be a little more than what you need but but if you type in psphelpline , it might get you to other places more your speed.

And like pzagy said give him time...in the mean time discreetly clear out certain things that might be hard to fall on.. such as end tables and rugs that trip ...... or antiques.

It is hard for you and I want to unload so much now but it's so hard to process. For your kids, make sure they get to spend quality time with their grandpa. Be patient and direct your dad to this site.. He may not want it but at least he know we are out here. There are others who have the disease who write about their experiences etc. My kids are the same age as you and my husband was 52 when diagnosed....he'd been suffering for a couple years prior....So what do my kids do? Well my daughter is having a hard time of it, my boys embrace it a little more. But all of them hug their dad like they were 5 again and this brings him much happiness! Don't be afraid to love your dad; and your'e right, it's not supposed to be this way! But this world is imperfect always changing the only one thing that I find is a stronghold is my faith in God. So if you are a praying person ask Him for strength and guidance, and if you read the Bible I'd like to share a couple verses with you.

As all this progresses so will you and your family. you will make it if you have need to scream cry shout get pissed off, heres a good place to do it! I pray that your young family can progress and learn patience and joy on this new journey. Remember we are hear for you.

God Bless you ,

AVB

If any of you lack wisdom let him ask of God, who gives to all men liberally, and scolds not: and it shall be given him. James 1:5

FOR

I will instruct the and reach thee in the way you shall go, I will guide the with mine eye Psalm32:8

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Thank you so much, yes I am a Christian and we go to church every week, (my husband is an ordinand) I had to leave the teenagers bible study I'm a leader for the other night as we were praying on how we remain faithful even in the most difficult times. I am turning to Our Lord to strengthen and guide me through this but more so to open my Dads eyes because at the moment he doesn't know Jesus and that's what's worrying me most.

However if this is Gods way of getting him to come to know Him as Lord and Saviour I am totally faithful to that no matter how much it hurts now x

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I have just joined this wonderful group and was so encouraged reading your post and that of abirke, being a believer myself.

My husband's faith is sustaining him well and I cling on to the truth that the Lord will not test us beyond that which we are able to endure. With the tests come the equipping. May the Lord's peace be known in your home.xx

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Nikki

I feel for you. My dad was diagnosed in October so the last 3 months have been a living nightmare that I wish we could wake up from. It is the crulest way now earth to lose your loved ones and is not how it's supposed to go.

I am slowly coming to terms as to what is going to happen. I think that it's a kind of grieving process but before you actually lose them.

There is so much to learn about the damn condition. So much planning as to how they want to live and die. You can't plan for how they are going to progress, what problem is going to befall them next. You just have to read about psp and have an understand of what may be around the corner.

Give dad time as well to come to terms with what is happening to him. As I tell my mum, its bad for us but it's dad that it's actually happening to. He can see and feel the changes in himself and can't do a damn thing about it. We are losing him but he is losing himself and us.

Keep coming back to the site. The people here are a great supporters of each other and a fountain of knowledge as the medical profession are useless.

Take care

Pj x

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So sorry that you have to deal with this awful illness but also welcome. As people before me have said this site is such a gift. Many people come here for help as quite a lot have experience and knowledge of what to do in certain situations as it effects different people in different ways but you will always receive an answer to point you in the right direction. Also good to get things off your chest, to shout to scream don't worry we've all done it xx

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Hi welcome.

First words said to us were progressive but not predictable and that is the only certainty with this illness uncertainty , you will become the expert.

You now have to be practical , get your gp to refer dad to hospice, OT and local adult services, get professional packs from the PSP Ass and give them to every professional you meet, they will know you mean business!

Get yourself and mum to your local carers association they will direct you re benefits.

Love him everyday, we have been on this road for a while, you will accept after the anger and you will all be in a better place.

Kids adapt, our little Harry has never known his 'proper' grandad but has great fun pressing the buttons on his special bed and sending him up and down, he rides in the through floor lift and calls it his spaceship! Yes I know Rog would have been so active with him but don't worry about things you cannot change.

Maintain a sense of humour even though your hearts are breaking and buckle in!

We are all with you

Julie xx

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I'm so sorry to hear about your dad. I'm not sure that saying 2 years to you was the right thing to do. As psp is progressive and everyone progresses at a different rate with oftentimes a different set of symptoms then there is no definitive time allocated to anyone with this horridness, plus the fact that other things that crop up, like aspiration pneumonia, can have a bearing on life span and of course the sufferers own end of care/life wishes.

Dont despair about God in your father's life. My husband and I have always been practicing catholics and when he was unable to go to mass I would bring a blessed host home for him but then he refused it and said his faith was no longer important. I told our priest who said it was probably the only thing in his life that he could make a decision about and it was his protest. I accepted this but I was heartbroken. Since then our lovely priest has been to see him so it's all good.

Have you got a chair lift, disabled shower, electric hospital bed, riser recliner chair, commode, wheelchair. The list is endless butthey're all needed. Your father is probably very frightened and afraid of the unknown. Just be there with him when you can and encourage your children to hug and hold his hand. My hubby likes that..

Sorry for going on so long. Take care and one step at a time. Do keep coming on here with your problems. There's always someone to give you a helping hand. All the best. Marie

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Sorry to hear about your father. He is young to have to bear this blow and he needs time to accept it.

You need to start the practical things others have suggested.

My advice would be to remember NOW is as good as it will be so make the most of it. Talk whilst you can, laugh and make memories.

My children are your age and they give their dad lots of hugs and continue including him as much as possible.

When Chris was diagnosed our youngest grandson was 7 and he and Chris were "mates". We had cared for him two days a week from him being a baby. He was devastated when his grandad was unable to be in goal without falling. He cried a lot , denied there was anything wrong with grandad, and then asked questions. I always reply honestly. All our grand children are interested in the brain.

They are all a bit cautious when grandad chokes spectacularly but generally accept whatever the adults accept. Its sad for us to know what they have lost by not knowing the active grandad but we can't change that.

Use this site. It is a lifesaver.

Love from Jean x

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Hi Nikki,

I'm in a similar situation to you. My dad was diagnosed last March and he's quite far along now. I have two children, a little older than yours, 11 and 9, but they've been dealing with 'wobbly grandad' for several years now. Are you in UK? If so, it takes AGES to get adaptations in place - we had to pay privately in the end, so that fact that your sister is on board and getting organised is great. I've had to do that, whilst home educating my two. It can be overwhelming. I often worry that my kids are exposed to too much BUT there is a flip side of huge positivity in all of this - they learn kindness, compassion, tolerance, understanding, and we get a chance to show lots of love. My daughter won't let anyone else push dad's wheelchair, and she anticipates every need. My son knows that his hugs make grandad's day. It's dad's birthday tomorrow, probably his last, but we're spending today getting ready to make it special. The only way I'm finding to deal with all of this is to look for the silver linings. Very hard to find them at first, but it does get easier. This group is amazing.

Sarah x

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Agree with Sarah.

Our grand children are lovely with Chris. They wipe his nose and try to support him. It brings tears to my eyes sometimes.

Jean x

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Welcome to this site... I wish it were under better circumstances. You'll find plenty of support and advice here. Many on this site are family caregivers and know the PSP journey all too well. Some, like me have PSP... diagnosed over 3 years ago. None of us manifest the symptoms the same way or time, but share most of the disease's commonalities. Some patients decline very quickly and others (like myself) steady and slower. There'll be times when the PSP plateaus and you can even think "hell, I'm getting better"... don't be fooled. There is no successful treatment or cure at this time and that's a stark fact. Doctors cannot conclusively give you an accurate prognosis of an "end" date, truth is they really don't know. Sometimes it's an educated guess, and sometimes they get it right. When I was first diagnosed my wife and I didn't ask what's the end game of PSP or a length of time. Personally, I think if you have a number in your head, you won't be able to shake it and that would just affirm what the doctor told you... almost like a self-fulfilling expiry date. Again, use this site as a resource and a place to vent your frustration, anger and fear. Never give up HOPE.

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DaddyT, you write beautifully, despite having psp. I love that!! And I so agree to never give up hope. I say, with LIFE there is always HOPE. As long as you're breathing, there IS hope!!!!! Have a good day DaddyT, to you and your dear wife.

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Sweetie

This is so tough for all of you.

You all need time to adjust and so I would suggest trying to keep things on a normal keel for the time being.

However if possible and if you can find the right moment you might want to try to talk to your dad about things such as power of attorney, wills and end of life wishes. I know, its difficult.

If he won't engage then that is understandable, but maybe consider writing him a nice honest letter about all of your concerns for his health and future care needs.

You can go to your GP in your own right and perhaps ask for help and advice on telling your children what is happening. Finding out what support is available etc.

You have to fathom out what advice is best for you, just keep posting.

Life expectancy is very hard to predict, especially if your dad is otherwise healthy and also with this awful disease of PSP.

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I'm very, very sorry to hear about your Dad's diagnosis and the effect it is having upon you all. I was diagnosed as having PSP in October 2015 on my first appointment with a movement disorder specialist having previously been told that my symptoms were probably due to Parkinson's. I knew something about PSP: my reaction to the news was one of horror and I sank into a deep depression which did not even begin to lift until January last year. My husband was with me when the diagnosis was given but he didn't know anything about PSP at the time and he was quite calm about It all: our daughter understood more than her Dad did whereas her brother whom we only get to see 3 or 4 times a year - he lives in the West Country and is headmaster of a boarding school so is very tied up with hiis school and does not get much free time, - didn't seem to take on board the fact that the illness is progressive and incurable . So, surrounded, or so it seemed, by family members who were in denial it wa down to me to drag my spirits up and to actually think long and hard about the future, how I would deal with increasing dependence etc.

Too tired to continue now: wil try to finish off tomorrow and hope that I can give some useful suggestions, from the viewpoint of a patient.

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Dear Patienan, I'm always especially grateful for the viewpoint of the person with psp. My guy has not been able to articulate much about it, at least not for the past couple of years, so I learn a lot from those who can. He has always left it to me to explain to him what Is going on and what the doctors say. Quite the opposite of your situation. Thanks for sharing. Love and peace to you, Easterncedar

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Thank you all so much for all your replies, they have all been a real help, and thank you to those of you also suffering with PSP too, I'm so sorry you have to live with this disease but thank you for sharing with me and supporting/comforting me aswell! You are amazing.

We've been given the about 2yrs because of how fast he seems to be deteriorating from when he last saw his consultant, id say at the moment he's probably in denial himself but he was only told Tuesday so I guess he'll need that time to process.

Well we will see how he is tomorrow afternoon as we always pick him up Sunday afternoon to come and see the boys and they wouldn't have it any other way.

Thank you all of you again so much xxx

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Hi so sorry to hear about your dad. It's tough when they are so independent.

Like you were a similar age and I also have 2 boys so it becomes a worry trying to juggle home, work and making sure your dads ok.

PSP/CBD has no time frame as everyone is different so your dad may be strong and live longer the doctors can't say!

My dad was very much the same as your dad was diagnosed with CBD but he was so independent he actually lived on his own for around 7 years with no help at all and he use to tell us off (me and my family) if we tried to help etc (looking back I'm really proud of him) he never once complained about CBD and he got on with life, went on holidays with family, weddings etc and enjoyed the time he had.

In 2015 things started to speed up and we noticed the falls were more frequent, his speech was badley effect and he struggled with eating etc.

Things really took a turn for the worse around May last year he literally could not walk, speak or swallow normal foods, weight was coming off fast and he had no choice but to have 24 hour care at home.

In September he went very thin and even though he was so poorly he still would not give up. We still took him shopping and bingo (his fave place) and pub for football and Bacardi. We as a family along with Social Services decided he needed proper 24 hour care it broke mine and the family's heart but we had no choice he ha am literally bed bound and his weight dropped to 5 stone :(

Sadley my dad passed away 17th November just gone and I miss him terribly. I brake my heart every day.

My advice on this is just be there for him you and your family. let him be as independent as that is there way of dealing with this dreadful illness.

You will know when the time is right to start making decisions for him so for now just spend as much time and make as many memories as possible before this awful diease takes a proper hold of him.

Sorry if this seems to the point I'm just glad I spent loads of time with my dad and I made 1-2 days a week our special day out each week.

Take Care xxx

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