PSP Association
5,421 members7,447 posts

to await definite diagnosis - to tell or not to tell

hi - my dad (79yrs) attended geriatric clinic with symptoms of falls backwards, fuzzy head feeling and difficulty finding the right words. I have found out his scan has come back with typical hummingbird sign on MRI and the geriatrician is presuming PSP. He has been referred to neurologist to confirm - appointment is on Nov 1st (4 months away). We are due to attend geriatrician next week to get test results - I imagine they will detail the findings but say they need neurologist to confirm. I am just wondering should we go forward with geriatrician appointment and get three-quarters of a diagnosis which I know will cause my mum 4 months of sleepness nights and Dad to withdraw from activities such as pitch and put. They have their 50th wedding anniversary at the end of August - and are looking forward to it, with a few days away after. I don't know are they better off not knowing until someone can 100% confirm it and enjoy this event without this shadow over them, and then deal with things. On the other hand who am I to try control what will be and I will have to live with me knowing and them not for 4 months, and am I trying to drag out the denial a bit longer. I'm their only child so having this battle going on in my head at the moment. Any experience or advice would be great. Dad is currently walking independently, doing light gardening and has actually just retired. It's so heartbreaking - Mum is 77 and just don't know how she'll cope.

15 Replies
oldestnewest

Is your mother leaving it all to you ? We were at a similar stage and I talked to neurologist. Does your mother want you to take control ?

Its a dreadful diagnosis as there is no hope or help.

If she isn't asking she doesn't want to know. We all deny.

Can you cope with holding this alone ?

Its a dilemma, Catherine. My instinct is to tell them to enjoy the summer until you see the neurologist.

Anyway my advice on diagnosis is always to make happy memories while you can.

love, Jean xx

2 likes
Reply

THanks Jean - I'm trying to get hold of the geriatrician to see if there's anything to be gained by giving them the information without confirmation next week. Mam doesn't know yet either. she's such a worrier at the best of times usually about everyone else instead of her self - she's awesome, guess I'm trying to protect her too. wait until it's confirmed. I don't know how ill cope with holding it, there's been a constant knot in my stomach since I found out a few days ago. Debating it out with my husband who has been great support.

1 like
Reply

You can't protect your mam, who I'm sure will cope but be devastated as we all are.

I just feel it would be nice for her and your dad to enjoy the celebration. I would guess that inside she knows but doesn't want to face it. That's what denial is, isn't it ?

The fact that you have posted this shows your sensitivity about it. Do you think she would understand and bless you or be angry ?

I'm glad to hear your husband is supportive. You all need all the support you can get.

This site will be a blessing for you as it sinks in.

love, Jean xx

2 likes
Reply

I am 77 and my husband is 81 he was diagnosed oct 17 after months of ( is it this or is it that ) for us it was best to be told , and know what we were dealing with. At least we know our limits and , can try to understand what he will need assistance with , and try to prepare for the future. For warned is for armed so to speak. Don't get me wrong we have both had our days of crying and feeling helpless, and we still feel like that some days .As he can no longer do odd jobs I am trying to tackle them .I used to hate driving even though I've been doing it 45 years , this last year I've started to enjoy it more than I ever did before , never thought it was possible , but needs must ,so when he had to give up his licence I just changed seats , ,its better that side , we go where I want too go. Any way keep reading on this site you'll learn alot of useful information. Also get your mum to read it as well, she will get the information too. It's a steep learning curve... good luck .......Brenda. .

1 like
Reply

I don't think anyone can give you a real answer, as it all depends on how your parents generally deal with adversity. Even knowing that it was likely, when we went for the confirmation appointment with the second neurologist it was still an awful shock. It took us some days to get past that, and then we just hitched up our belts and got on with it. It's not good news, but it's not cancer or alzheimer's or ALS. There are still good times to be had. My feeling is, if you can cope, the sooner you know, the sooner you can focus on the best use of your time. I would hate to have anyone try to restrict such information from me, but only you can imagine how your parents will absorb the news. I do sympathize. It's hard being the one in charge. Hugs to you and best wishes, Ec

Reply

Thanks so much Ec, this is the hardest decision ive ever had to make. Part of me feels its not my decision to make but knowing them I dont wantt them to worry for 4months when they still wont have confirmed diagnosis. I know this is happening but wud love for them to enjoy this last celebration without PSP hanging in d air. Dont even know if im thinking logically as still grieving the news. Guess ill b a frequent flyer on this website

Reply

This is the place for sympathetic listeners!

Reply

typing out your thoughts definitely is therapeutic. I think Dad when he gets the news will internalise his grief, and I'm so afraid he will give up, and not be able to find happiness in moments. Mum will put her brave face on but be devastated/anxious on this inside. Thats why I'm so torn. I know we will face it and we will all know come November but just wondering should they be let enjoy the next few months without knowing the full extent of what lies ahead.

Reply

Although my husband had the hummingbird pattern on his scan, his neurologist would still not confirm the diagnosis of PSP but said that can only be done post-mortem. He did say though, that it was likely to be PSP. It was confirmed when my husband donated his brain after death, 6 years after diagnosis. The sooner the professionals become involved, the quicker help can be put in place when your parents need it. I found it better to put things in place before they were needed.

As others have said, there will still be good times despite the devastating news. Your parents should still be able to do the things they do now and continue to plan for their anniversary and time away after. Hopefully there will be no changes in the next four months but we found changes can come suddenly. My husband's condition would be stable for weeks, sometimes months, only to dip suddenly then a few weeks/ months of stability at that level and then a dip again. It wouldn't be good if your dad does dip in the next few months but hadn't been told. We knew my husband would die within about 7 years so we crammed in as many good things as we could. During the 6 years, several of our friends died suddenly from heart attacks, strokes etc and my husband used to say, "Another one gone before me". It is devastating hearing about PSP but they have time to make memories, catch up with old friends and relatives and do things they always wanted to. Most don't get that chance.

You know your parents so only you can decide the next move but I would never cancel an appointment unless absolutely necessary. They need the professionals on their side and it can be quite difficult sometimes getting hold of them.

I'm so sorry you all have to go through what is coming. It's going to be hard for all of you, but with help you will get through it.

Very best wishes.

X

2 likes
Reply

We went through the same dilemma. My mum was walking, talking eating etc when she was diagnosed, her cognitive ability was a little impaired. I would take my mum to all appointments and shield my father through this. As siblings we made the decision that it would not be benefit him in anyway of knowing the cruelty of PSP. We have slowly drip fed information as my mum declined preparing him for the next stage, gently preparing him for the worst. I just didn't think that he needed to know all the raw detail. I think it is alot for anyone to handle, my parents 50th anniversary is next year.

Every family is different, our aim was to shield our father as much as we could from.the pain, there was nothing that we could do with mum. The fact that her English had deteriorated because you go back to your mother tongue was a blessing for her (as she too was shielded) during appointments.

I wish you and your family the best at this difficult time, there is no right or wrong xx

1 like
Reply

We had a similar experience, my mum was told she might have something while at an appointment, but the doctor she was with refused to write it down and she could not remember what it was. My Dad was with her and he couldn't remember either, she had an appointment with a neurologist later in the year but that left us all wondering what it was they thought she had.

She then had a bad fall which sent her into a&e and I saw the possible diagnosis on her notes when I went in with her. Obviously my sister and I googled it and that was how we first found out about PSP. A bit of a shock, my dad did not have any idea what we were dealing with either. However reading the symptoms we stopped waiting for the neurologist to confirm and started thinking of her as having it because her symptoms were so strong that even though we didn't want it we knew it was true.

From then we started to look after her as having it. No treatment as such, just an understanding of what was. It gave us an opportunity to start planning ahead together.

The neurologist did confirm the diagnosis ( based on symptoms alone ) as probably PSP, as others have said it seems only to be confirmed retrospectively after death. That appointment was really good, her neurologist is very thorough and is happy to answer any questions we have, we also met Jan our area PSPA advisor who gave us as much info as we could take in, and provided us with more to look at later.

Look after your Dad, enjoy your time as a family and treat his symptoms without worrying to much about the label. If you have read the list of symptoms and feel that they are applicable then you already know.

JA x

2 likes
Reply

If he is not having falls I would leave telling them until you have a neurologist's diagnosis.

If it is CBD there are no drugs to stem the progression so waiting till you are sure is in my opinion the best way to go.

Patrick.

Reply

Hi Patrick,

He was having falls, they seem to have settled for a while but that can happen sometimes I've been told. They think (or are pretty sure I imagine it's PSP). Suppose it depends how much information/to what extent the geriatrician goes into it - whether he says something has showed on scan that explain his symptoms but await neurology review or if tell him what it is, what it means and that they just need the neurologist to sign off on it.............

Reply

Hi Catherine, this is a hard decision to make. If you do decide to tell them, I would suggest that you also tell them to go out there and make lots of new happy memories while it is still possible, and then they can reflect back on them if it becomes too difficult to anything. Sending you lots of love, Nanny857xx

Reply

Thanks nanny, my mind is in knots with it all. Sometimes I think let faith decide and see what the geriatrican says, maybe knowing they will realise the significance of their 50th but then I know their 50th won't be as happy occasion, it might be so soon after news for them to even want it.

Reply

You may also like...