When/how do you tell someone that PSP is terminal?

[Sawa]

My husband was diagnosed with PSP just over a year ago. As soon as I found out, I was straight onto the internet and found out everything I could. He's not like that, and I don't think he truly understands what is in the future because of this horrible disease. I don't know if I should sit him down and tell him, or let him carry on in some level of ignorance because maybe he's just not ready to face it yet?

[peterjones]

well sawa i would let him carry on if he is ignorant of the end results but i would ask him if it came to it if he would want a peg fitted\ about communication between you\\has he made a will out ]] what happens if he cannnot walk\\\ about nursing care etc but he may not get everything that you have read on the internet its a funny thing this psp nobody seems to get anything at the same time or in the same order he may live hes life out and get no more than he has at present if its slow progression i dont know that anybody is ready to face the end yet mate\\ im not going anywhere its to good down here anyway just feel around for a while with questions\\\ but maybe he knows and is keeping it quiet for your sake psp sufferer peter jones queensland australia

[toty]

Hi sawa

My dad died on the 1st oct he had psp for approx 12 years,originally diagonosed as parkinsons.He knew he was ill,we didint really get a diagonosis until last few months of his life.Mum asked him if he wanted to be kept alive by artificial feeding or whether he wanted to go into hospital.He didint want either.He died at home no medical intervention apart from a little pain relief.Its a diificult subject to discuss with your love one,but just make sure you know what medical help you both would like,his thoughts on feeding,drips,and hospitals.Its really tough my mum cared for my dad 100% at home its really really tough,you must think about your future too. Love Toty

[PD-plus in reply to toty]

You mentioned about pain relief medicines. Do the patient feel pain in last stages? Can u guide me through?

[toty in reply to PD-plus]

Hi PD_Plus

No one can be really sure about pain felt in the last stages,with dad he seemed to slip into a coma,but because he couldnt take in any fluids,he prob was dehydrated,he became a liitle aggitaated,so thts why painkillers were releases through a pump drive released thru a timer.The few days before he died he did have aches and pains.But he didnt make any noises to make us aware he was in serious pain, just a day before he died he began to frown with a little aggitation. But my dad was a fighter and hung on as long as he could,he had a strong heart,but the rest of his body let him down.xxx

[teena2]

Hii Sawa, It's such a difficult decision, isn't it.to tell or not to tell depends on so many things and at the end of the day only you can decide because you are the one who knows him best, but i will quote you a story -the husband of a close friend of mine had been diagnosed with lung cancer. He confided in me and asked me not to tell his wife. His wife then told me that she was sure he had cancer but please not to tell him. I was lucky because I had the ear of the consultant treating him so i was able to go to him and ask that he saw both of them together and get them singing from the same hymn sheet.They were then able to support each other and my gamble paid off.

On a more personal note my husband Chris died in June this year from PSP. He knew all along what was going on and I do feel that it helped him to come to terms with the inevitablity of life and then death. There is no right or wrong in this dillemma. Follow your heart. my heart goes out to you. with love

Teena2

[Hidden]

HI my mum has always been clued up on medical things and repeatedly wanted to know what was wrong with her throughout the years of misdiagnosis. Eventually when the Neurologist said Progressive Supranuclear Palsy she repeated the word progressive and went very quiet. A few times she has talked about leaving things to people and we just said are you going somewhere then and she chuckles. She has fought back from the brink of death in August when she had a UTI and which was followed closely by Shingles and I think that is because we haven't actually said it is terminal and it has left her with hope. It has all happened very gradually for her even though it has run a typical course (4 years of falls and eye issues before diagnosis, then a rapid decline over the fifth year ) and mum says she feels normal when she is in her chair. But she has not had depression because she doesn't know what is in store and that's the way we prefer to be, There is no point in giving up and feeling unhappy when she can still enjoy simple pleasures like going out to the shops or listening to tv. She is 77 so is more accepting than a younger person would be.

You are the best judge as to how much to tell him. With mum we have always told her what she asks. Best wishes xx

[marusela]

my father is 83 years old, he is in 6 stage of 7 in PSP , he was diagnosed since one year but i know that he was illed from more time ago...i don´t know how many time he will lives all depend of patient....that says me doctors the more young they are more longer its

[jimandsharynp in reply to marusela]

Marusela, I've only heard of four PSP stages. Can you please email me the seven steps you've found? Email [e-mail] I'll be forever thankful.

Jimandsharynp

[marusela in reply to jimandsharynp]

hi again , what i want to say before was that in Spain doctors check level of patients dependency.... you know, if they can not walk by themselves, or eat or bath etc etc etc.....doctors says that in this kind of diseases there are 7 levels 1.2.3 are initial phases, 4.5 when you see there are problems in normal life activities and 6 when they depend of another person 7 its final phases, when they are in bed and die....my father phase is 6 i give you this if can help you i dont know how it is in others countries.. hope help you

pspinformation.com/dise...

[jimandsharynp in reply to marusela]

Thanks for passing that along to us.

[marusela in reply to jimandsharynp]

i know that every conutry makes diagnositcs and take other protocol of psp disease but in few words never mind stages, what realy mind its be conscient when patient needs help for all activites in life....this is the phase when you know you are in a countig down to the last phase : be in bed to the end. that what explains to me.... send you hugs all here....

[marusela in reply to jimandsharynp]

pspinformation.com/disease/...

pspinformation.com/disease/...

in your contry there are 4 in my country 7 but its the same.

[shellyzhang in reply to marusela]

i think my dad is in the 6 stage, he was diagnosed 4 years before. No medicine can preventing this diease's development.

I really want to know have you ever tried "Zentylor" or " Nypta"? as i found from internet this medcine is from Zeltia Spain, and in phase II cilincal development for treatment of PSP.

Do you know any news for this? we are desperated after heard the failure of the davuntiede.

[carehope]

Dear Sawa, This is the 3rd time that I've had to start over because my message keeps getting erased. Since it may happen again, I'll be brief. My sister, 63 yo was recently diagnosed with PSP. As you said, what a horrible disease! Before A. got her definitive dx at Columbia in Nov., she'd gone through 3 years of suffering with the progression of sx without any medical help and being prescribed meds that actually made the PSP sx worse ! This is quite common as you've undoubtedly read . We've brought her here to live with us and have been adapting our home and daily routine to A's needs. She's super intelligent and has always been totally independent in every way, but with love, caring, and humor we're doing our best to deal with her illness. We don't think that there's anything positive to be gained by focusing on the worst outcome, even if it's inevitable. It's much more productive, meaningful, and beneficial to live in the present and plan for the future in ways that count.

We all use a lot of humor in dealing with everyday situations, though we discuss frankly the difficulties related to functioning with PSP. Of course it robs the pt. of their life as it once was, but they're still living as they're going through things that are hard enough to deal with, without being negative. There is always hope and in this case it comes in the form of a very concrete medication, Davunetide, which will supposedly , according to a Dr. at Columbia , be available very soon, we hope. It's not a cure, but has been proven to be very helpful.

Doing our best to make our loved ones days and nights as comfortable as possible and their lives as normal as possible is what we're doing on an ongoing basis. For a pt. who has a progressive illness , nothing is served by extinguishing hope. Rather, hoping, as you prepare for the future in meaningful ways is much more productive and stress relieving. Making sure that you both have Living Wills, Durable Medical Power of Attorney as well as regular Durable Power of Attorney, and Wills is of the utmost importance. Knowing that your and your husband's wishes will be able to be carried out as you both wish goes a long way toward peace of mind. Positive thinking and doing and the gradual acceptance as necessary or not for the pt.to continue as well as they're able , should be the guiding factor.

We and our afflicted loved ones have a tough job that we can best deal with by making whatever gains we can make on behalf of ourselves and our families. It's so easy to lose perspective in the face of this challenge, but as we know , illnesses like this are out there and can and do strike any anyone at any time. There are so many people who are going through very similar circumstances . If people go through their lives untouched by such tragic events I think that they're in the minority ! I hope that some of this helps you and your husband. Know that even though it may feel like it , you're definitely not alone out there !

Best wishes !

[jimandsharynp]

Sawa, In the beginning we were told the diagnosis and that there were no medications and no treatments and that patients usually die from aspiration pnumonia or a bad fall. That was two years ago. Since then I don't discuss the outlook with my wife who has PSP. She heard the diagnosis etc. up front and I think she understands it's a downward spiral so we just don't bring it up. If she has a question, I answer it but I don't initiate discussion of what's ahead. What's the point? You can't alter the future of PSP and were it will eventually take the patient. If you don't have your "end of life" wishes in place then of course you need to have that conversation.

My wife was in denial after the first diagnosis. A second opinion reduced that denial to some extent. A third diagnosis by the Neuro center at the University of Florida seems to have removed all remaining denial. We go there every four months for followup and to see how she's doing, have a swallow test, a bit of ocupational threapy, etc. We see a local neurologist but not much happening there as far as information etc. I did get two documents (book and booklet) from the PSP group in the United Kingdom (England). I've had my wife look at those and they sort of ease into all the aspects of what is ahead for PSP patients. I Googled PSP and found some short postings/documents that explain the basics of where PSP takes patients. Maybe one of these would be of use.

I hope this has been helpful. This is a great group willing to answer any question so feel free to post when needed.

[dorothy-thompson]

I agree with jmandsharynp and thats pretty much how we have been dealing with it in my husband's case.

dorothy-thompson

[jac001]

I think it is better not to tell them. We only told mum some brief details. I didnt feel it would do her any good telling her about the awful condition and she never really asked much about it either

[bubbie]

hi there, my husband has psp going on 5 yrs. now. he is very stubborn and is determand to still do things on his own. I have help all day and now im thinking to get more. thank god we have insurance to cover the cost. i am not in denial and know the end but we keep going and try our best. he knows whats happening to him he has great will power also. I try to be strong in front of friends .they dont have a clue how horrible this disease is. write back to me . we live in florida and have a psp group and that keeps me going. bubbie

[dllera]

Hi there - it is tough place to be in and we all have been there. We didn't have to tell my father. When we received the diagnosis - my dad knew what progressive meant -he knew he wasn't going to get better. Over the course of year or so after diagnosis - we establish healthcare directives (in which he always knew he could change), power of attorney, and dad made his wishes known. There was no guessing for me and I can't tell you how much I appreciate my dad for doing that. I carry no guilt for any decisions made because they were his. I really think that you should tell him what he can handle but make these arrangements and know what he wants - feeding tube, no feeding, medical interventions etc. I wish you all the best.

Danielle

[jennifer-nind]

Hi Sawa

This is a difficult decision you have to make. Each patient and each family deals with this dreadful illness in their own way. There is no right or wrong way to deal with the illness and how you handle it, how you tell the patient and how you and your friends and family cope is up to each case. Just do your best and whatever desicions you make will be right for you.

If you think your husband cant/wont want to deal with the reality dont beat yourself up too much, just find out as much as you want to, ask as many questions as you want and if you feel up to it join a support group.

My husband died in April 2010 at the age of 58, I feel he had the illness for around 10 years or so but was mis diagosed as a stroke in July 2006 and formally diagnosed with PSP in September 2006. Like most of us, i Googled the illness and gathered information, joined the PSPA [and now co run a support group], and I fouond that the illness is similar to MND whish my late mother in law had. When I told Ray his illness was similar to that which his mother had, he said he knew how that developed and didnt want to know about PSP, which I respected.

Deal with things as you feel you ought to and dont be forced into anything you feel is not right for you or your husband.

Ask as many questions here as you want to, we have all been there or going through the same as you.

Thinking of you over Christmas and New Year.

Love ans best wishes Jennixxxxxxx

[jac001]

Hi

Mum was told her diagnosis in March after being treated for PD for years. I had a little experience of the condition as I worked to a psychogeriatrician who had a patient with it. I never went into too much detail about the condition. I just explained it as a condition like PD but that it was a bit worse. Mum never asked any questions about it. She went home to glory on 1 December and we never dwelt on the PSP. I think sometimes less info is better but it is a choice you have to make.

[Sawa]

Thank you so much to everyone for your replies. I apologise if this was a thoughtless question to post onto this forum, where I know there are some PSP sufferers who also sign on. Your advice and suggestions are all very valid and are really what I have been doing up to now. If my husband asks me anything, I answer him truthfully, but don't volunteer too much and always try to be as gentle and tactful as possible. Of course, the downside is that I 'hold' a lot for him (my sister's description), which does take a toll on me emotionally.

It feels harder because the one person that I would always turn to for support, is the person that I simply can't lean on in this situation. Life is always about lessons, I suppose, and the lesson I'm learning with this is to ask for help.

I am so glad that I found this forum. Just knowing that there are people out there dealing with the same things that my husband and I are, is such a comfort.

[Jane2212]

Hello Sawa.

My Mom and I were in the consultant's office when he told her that she had 2-3 years' left. She asked 'left for what ?' and he said 'left to live'. It was as brutal as that. Luckily she was a fighter and we both refused to believe his diagnosis. I always spoke to her as if we could beat PSP and that there was research going on etc and she always remained cheerful and wanted to get well again. We didn't discuss death or anything though once or twice she did say things like 'when I'm gone don't keep coming to the cemetery' but we didn't dwell on it. Right up to the end we would try anything we heard of to try and ease the PSP and we always talked as if there was a future. I do believe that that is why she lived for 12 years - 5 of them after the brutal diagnosis. I think if we had talked about death and the eventual end of PSP she wouldnt have bothered to fight and would have left us quicker.

Fortunately Mom never asked questions about what might happen. If she had asked I probably wouldn't have told her the entire truth anyway.

Jane

[Sawa in reply to Jane2212]

Hi Jane,

Thank you for your reply. I can't believe that the consultant was so incredibly insensitive!

We certainly don't focus on the worst outcomes, but concentrate on the here and now, and having a little bit of fun and laughter every day. After all, we can only live our lives one day at a time, can't we?

What complicates things is the necessity to have all that paperwork in place. I know that I need to be practical and prepare 'just in case', but can't broach that subject with him without it forcing both of us to consider the worst. I don't think I'm equipped to do that yet - not emotionally, and not even practically. For those of you who have had that conversation, did you do it yourselves, or did you have someone guide you through the conversation?

Again, thank you for sharing.

Sawa

[saz16]

Hi Sawa

When we found out about Mum like you I was straight on the internet and found out - I then asked Mum who had no computer literacy if she wanted to know .... she said yes so I told her and gave her the pack from the PSP nurse.

I do wonder if we did the right thing sometimes but I think it has helped us all come to terms with what is happening - just before Mum lost the ability to communicate in the Autumn we did sit down in the hospice with the consultant and have the difficult end of life planning conversations and she was very relived to have them recorded and to know we would keep her at home.

She is now very poorly and we are pureeing her food - I still have loads of worries about how we will cope towards the end but I keep saying to myself - try not to worry about the things we cannot control and make the best of what we can.

Mum is 81 on Sunday and we are taking her to Church and cooking her favorite meal and spending time as a family. Try not to worry too much I have found it very difficult to come to terms with that but the wonderful people on this forum will help you!!

Sazx

[Jane2212]

Hi,

We did get paperwork in order (power of attorney) quite early on, I explained to Mom it would just stop her fretting about bills getting paid etc. We didn't talk about anything morbid at all but as she deteriorated and knowing what the consultant had said to her, mom put together a pack while she was still reasonably able, containing a witnessed will, grave deeds,letters to me + my husband and a list of people to come to her funeral - she even put "make sure bread is fresh for sandwiches at funeral" on the list !! I didn't know about this till she passed on. It probably made her feel at ease doing the pack so in that respect sometimes it might be better for the patient to know the prognosis. But day to day we kept up with the notion that she could become a bit better and possibly get onto a research project.

It's such a difficult one - very individual.

Jane xx

[lepman50]

Sawa:

Comming from a man, I would want to know what I have , and what I will be dealing with before hand before it happens. and the final out come. It helps come to terms with it all easier if that makes any sense. he may want to accomplish or do or change something before the end. if given the chance most of us, if we knew it was comming, would probably have some things we would like to do, say or change before it happens. I know from everything that I have been going through it would have at least given me some kind of way to help fight the symptoms better as well, or what to expect before it happens, I have done alot of reasearch as well, and I don't want to seem callis, but to help make final life decisions as well. I have also learned that PSP dosen't directly cause death, but the complications from it do.some PSP paients may live up to 16 yrs after, especially if it happens at a younger age. Thats my hope , I have alot I want to do, and contribute to as well. As far as a Difinitive DX for this condition,it is not, and connot be determined Difinativly, until pathology. According to the Neurological standards, NINDS, The criteriea's for this falls into one of three catigories Possable, Probable, Definate Porbable. until postmortum. And from what I have found out, Scientests believe we are only single digits away in years into finding a cure.

[Ammaan]

My mum was diagnosed of PSP in 2007. The peg was inserted in August 2011. She has been bed ridden since then. Has lost speech almost compleately but can convey discomfort and pain. She barely opens her eyes now, sleeps most of the time... and has been hospitalised since last two months. Before that , she was provided nursing care at home only. She is all bones now, makes involuntary rifgt hand and leg movements. Even now, twice a day she can take a few teaspoons of liquid orally....she has difficulty in swallowing but she does not refuse oral feed of few tea spoons. Her breathing is becoming heavy slowly, she groans while she sleeps with her mouth wide open. Oral suction machine is used daily under expert care. Fortunately, due to good nursing care and use of Alpha bed, she does not have bed sores. On a few occasions we have felt that she may not last very long now but she has not had any infection in last two years. Her vitals are fine. She is on medication for blood pressure for last 20 years or more. Is she terminally ill? Well yes.... but is her terminal stage near..... who knows. We wish that she does not have to suffer any more... but God only knows

[veronica_gp in reply to Ammaan]

t is very difficult to know when someone is ready. Home with my patients to just say a few things and then little by little everything else (always watching what and how much you want to know). It should be noted much the sick. Worse agree though colleagues say peinsen not equal (the internet and people will not like to think they can not trust because treatment). and it is a right that, because what decision you will make about your life but?. What if you do not tell everything at once (and you know what concoes more). Kisses and forces.