Hello all
My husband has a diagnosis of CBS. He is 55 and does not know.
My son is 26 i do not know how to tell him. I am in such turmiol. He is just getting a flat in London and is studying a professional degree course. I don't feel it is right to hit him with this devastation. But i also think he would be upset that he has not been told. Should i wait until his symptoms worsen ?. Any advice or experience would be helpful. Many thanks Joy.
Be honest and just tell them. Do not hide the truth, they have to know and understand.
There will never be a good time to give this news. I think it’s best you tell him now. It hard, I so know! 😢
Dear Joy, Hello and Welcome!
You said your husband doesn't know the diagnosis? May I ask why? Has he heard the words but hasn't looked up the details? Was he not in the room when the diagnosis was articulated? Does he have cognitive or emotional impairment? The reason I ask is I would perhaps respond differently if I knew.
But otherwise my response would be same as the others' just give them the basic information and take it one step at a time. Stick to facts.
I'm curious about hubby though...I hope you'll share more.
Good luck - We're here for you. We'll help get you through 
XXX
Anne G.
Hi Joy
It's vacation time now, yes?
That's a good time to tell him.
Unless someone has a particular vulnerability the 'best advice' is to tell them.
In psychology not telling folk is referred to as 'fragilising'. That it they get the message that they are not able to cope. Also that they have no role to play.
The 'professional' way to do it is to pick a moment and then give them an opener,. "Your dad is ill, it's quite serious.
That gives them the option of asking more or closing the conversation.
It can be his choice too.
It's a horrible task and I can imagine you don't want to inflict this on your son.
I'm sorry
Warmly
Kevin
Hi, so sorry you have received this awful diagnosis. My response is the same as Anne G. How did you get the diagnosis and not your husband? Unless he has another condition causing him not to understand, I think he should know. When we found out, my husband downloaded everything he could and printed it all out, putting it in a file. I didn’t find it until after he died. He lived through the 6 years from diagnosis accepting everything as it came, never showing fear or anger. Of course we cried together on occasions but I think him knowing exactly what to expect helped him.
Our three sons had noticed changes in their father a long time before diagnosis and had all said there was something seriously wrong. As did friends and neighbours. I was asked if he had had a stroke, if he had Parkinson’s, told he never made eye contact and many other things, all of which I knew of course. It was my husband who delayed going to the GP. It’s never a good time to tell someone devastating news but I think you will also find the support you receive from those who do know will be much needed and if you have friends and wider family members, they will probably say they knew something was wrong. We were very open with everyone, even our very young grandchildren who attended his funeral aged 4,6 and 9.
Very best wishes.
XxxX
We saw the consultant he spoke about CBS said he did not want to put a label on it ..... said very little else... Parkinson's plus etc. We had never heard of it....I googled it to find devastating news I knew my husband had not absorbed the information. He does not go on the internet. They have since written that CBA is the diagnosis
Hi Joy
CBA is not a diagnosis it is an acronym and one which seems to be more of a typo.
They have put you in a difficult situation. Do get a clear diagnosis and explanation from the Doctor.
This is far too serious for there to be vagueness and doubt.
You are in the UK, I think. If the neurologist was at a local hospital one then you really need to request what is termed as a tertiary neurologist from your GP.
These are the next level up in specialism and expertise and they have so much more equipment to make a more certain diagnosis,
With CBD and PSP it is highly acceptable to make this request and for them to acquiesce on the grounds of complexity alone.
I do hope this helps.
Warmly
Kevin
We faced the facts and skipped the "devastating" part. My husband googled enough at first to know what was up without exploring or dwelling on the 'possible' We have gone about the business of "living" ~ He says we'll just keep going till we can't - It's been 7ish yrs. and we're OK enough - lay the cards on the table, then pack them back in the box and put it in the drawer - Wishing you and your family well.
I agree with all that's been stated. Get a definite diagnosis then your husband and son both need to know. It's your husband's life and he needs to be able to make certain decisions as to his wishes medically. Your son will see changes and should be aware of what's going on. The wondering would probably affect his studies more then knowing.
My 2 cents...
Ron
Thank you all for your responses. It was a typo. We have a letter from the consultant to say it is a definate diagnosis of CBS or CBD as it is also referred to. Thansks again x
My name is Julie and I am 55 - I was diagnosed with CBD 4 years ago and I do agree that you should share the diagnosis. You will need the support of your loved ones and they won,t thank you for with holding this. Feel free to ask me anything - I am progressing very slowly luckily for me and my family
Great to hear from you Julie and so good to hear from people who have the disease but have slow progression. It shows others its possible (in some cases) to "have a somewhat normal life," and not have the disease dominate everything. I realize that's not true for all CBD & PSP sufferers, but it's precious information anyway! Thank you and blessings and good luck to you
💜❤️☀️
Anne G.
I know how "lucky" I am and I certainly don't take anything for granted. That's why this group is so good for sharing our ups and downs, x
Yes Julie it is precious information thank you
Hi Julie thank you. I will keep in touch xx
Julie if you dont mind me asking are you active in terms of fitness and what is your diet please xx
Dear Joy, my husband was in denial for a year after diagnosis and didn't seem to want to know anything about his condition, he was 62. The neurologists don't seem to be very supportive when giving the news and leave you to fester. We saw one lovely neurologist privately, he was much more in touch with the human side of the condition. I broke the news immediately to our two sons who were in their early thirties, they too reacted in a strange way, thinking that I was overreacting and making things seem much worse than it was. They, and others knew that he wasn't himself and hadn't been for a while but they really didn't want to believe that this was happening to their dad. I had to go one step at a time until Ben and the boys began to accept the diagnosis and that goes with it, Ben never really wanted to know the full details but knew it wasn't good news. He was very brave throughout and the boys became a great support to both of us but also got on with their own lives at the same time. It's a tough nut to crack but you will find a way through and your son will also get over the initial shock and be able to carry on with his studies as well as being a loving son. I think it is a very personal journey and you will deal with it in your own way, it's amazing what a relief it is to get it into the open.
Sending my love and support
Kate xxx
Thank you Kate for sharing your experience xx
Hi Joy
Sorry to hear you've had to join our club. I would very definitely tell your son. My brother had a long term illness and it took a turn for the worse when I was in my mid twenties and my parents tried to hide it from me for a bit, my Mum didn't want me to know. When I found out I was really upset that they hadn't shared the pain & stress with me, we talked it through and came to an agreement that they should tell me if anything happened to Richard or to themselves and they pretty much kept to this, which made it much easier for us all. I could understand if they were having a bad time with Richard and offer support & they didn't have the stress of hiding things from me. It may take your son some time to come to terms with things but it gives him the chance to make the most of the good times you can still have as a family together. I always said my brother & I were better friends because we knew he would die young and so we made the effort to spend time with each other and I am so glad I have those times to look back on now.
It's hard to tell someone & they may take time to absorb the information, but it's harder to hide something & you run the risk of the person then being resentful that they've been kept in the dark.
Be brave, be strong.
Keep posting
Alison
Alison many thanks for sharing. I will keep posting xxx
We all knew that things weren’t right with George a long time before he was diagnosed, print out things from the internet, my daughter did that, told our children from date the doctor said psp, they were devastated but they coped, so joy tell he sooner than later, he will be upset but at least you have someone to talk to. Yvonne xxxxx
Thank you xx
Joy,
I am very sorry to learn that you and your family have to deal with CBD. My husband has been suffering from CBD for 12 years and has far outlived expectations. He and I were very engaged in the diagnostic procedures and, until recently as the cognitive impairments accelerated for him, planning his therapies and working through trials of medications.
I still don't fully understand why your husband doesn't know but think it important that he know. After all, it is his illness and his diagnosis and I would do it for no other reason than to communicate my respect for his person and his right to participate in the planning for his own care.
Stay in touch, please.
Marilyn
Thank you 12 years is brilliant. Is he active, what does his diet consist of. Hope you dont mind me asking ?
What I have learned is honesty is the best policy but not always.
We are all so different . . . One son is 49 and I can talk to him about anything - the other not so much. Yesterday I had lunch with Son "I would rather not know' and I talked about my health issues - he listened and even asked a few questions (that is always a good sign) - Then I smiled and said "So let's talk about something fun now." There was great relief in his voice as he answer, "Oh Good!"
As moms we always want to protect our children - and I also believe we know what they can handle and when they can handle it. It is too bad your little one moved up the time table and caught you a bit off guard - But it sounds like you handled it well. YOU DID GOOD MOM!
Sending you and your family lots of HUGS - Granni B
Sorry I have not had my coffee yet - My mind went to a different post - I will only post in the future after that first cup of coffee. But my message rings true for you too. Choose your time and place wisely - and I would offer him a plate of his favorite cookies before you start your talk. Best Wishes - Granni B
Hello kind people I have told my son today. Am devastated....
Oh, Joy
Didn't he cope with it?
Oh, dear... Why are you devastated?
Are you 'OK'.
Please come back.
Hello Kevin thankyou for your support. It was a very difficult day and to see my son upset... I feel exhausted x people have been such a help x
Hi Joy,
Joining the conversation late as I've been traveling and then sick--I just wanted to let you know that our family is in the same boat. Don't know if you saw my post the week before, but we hadn't told our young kids about CBD, and then our nine-year-old ended up overhearing the whole worst-case scenario and it was traumatic. His dad had a good talk with him the next day, and, ironically, I think he's better off than before (not that that's the way to break harsh news). Even if your son is upset, it would be far more shocking for him to find out during some medical event later on, and then find out it was all hidden from him.
Thinking of you all as you process this horrible diagnosis. Again, remember all the people here who have beaten the odds of the statistics.
Lost
Thankyou so much. Yes one lady said her husband was 12 years in from diagnosis. That gave me hope xx
If you don't , in me asking how old is your husband
Joy,
I am the carer for my wife of 58 with CBD. Again she does not go on the internet. My approach has been different from many others above - it seems to be working in our case but obviously we are all in very difficult terrain. I have not told Ruth about her life expectancy and have only touched upon the more ghastly later stages of the disease. But little by little I give her information about each stage as she reaches it - why her eyesight is going etc. And together we plan what to do for the next stage. I do not want to depress her and I want these last years to be as happy as circumstances allow. (She is also on Sertaline antidepressant that helps).
On the other hand the rest of the family (children 20 years old and up) I immediately told them of the diagnosis and they all looked it up on the internet and we discuss the harsh reality round the table sometime. But they respect my wish not to overly alarm Ruth.
Richard x
Thank you Richard. I have I formed my sister in law and my son now. They both agree it would not be in my husband's best interests to be told. How long has it been since Ruth's symptoms began please ?.
I feel very protective of him and do not want other family to be informed. I feel I am betraying him. I could not bere the thought of everyone in the room knowing but not my husband.
Joy,
Sorry - I did not see your reply till now. Ruth was diagnosed in Dec 16 and is in the early to mid stage. All classic symptoms are showing up bit by bit. Generally she is pretty happy and only occasionally tearful and that's the way I will try to keep her for as long as possible.
R x
Bear sorry
Hi Joy
You've clearly done a lot of thinking and family discussion before making a family decision.
That's a lot of love care and thought.
I expect there are reasons for choosing not to tell him and sometimes folk signal they don't want to know by changing the subject.
Some general comments :
Sometimes it's a good idea to give the person openings, every now and then, in case they are sitting with fears and were too fearful to ask. An example I once came across was someone with diabetes who was terrified he had cancer... and so did not ask. Eventually he felt ready and was so relived it wasn't cancer.
I am not questioning your decision in any way.
However have you considered telephoning an end of life type phone line for specialist advice?
Here in the UK we have Marie Curie who are specialists in palliative care and all that goes with it. They have an advice line. Do you have something like that?
Just a thought.
Wishing you both the best.
Kevin
Kevin many thanks yes definitely good advice x
CBD
