I too have not told my husband he will die horribly from PSP, he does not even remember what he was diagnosed with, he still thinks it's lewybodies, he's not good on the computer so has not googled any of the diagnoses he has had. Although we talk about the future it's not long distance, just things like one day he would like to go to the coast again and see the see. which I would like to do for him if I can. I don't look ahead very far either, you can't as who knows what tomorrow is going to bring.
C has just started choking and coughing, he only shuffles slowly with a walker, sleeps a lot, has to wear a convene, cannot talk clearly all the time, gets very obsessive about things. I don't know if he realises he won't get better, it's something we never talk about, when he has had a bad day and says he can't go on, I just remind him tomorrow is another day and things might feel better then.
It's hard to know what is right, I don't feel I'm lying to him, but I am obviously not telling him the whole truth. I know if he had the reality of it all, he would not do anything different now, he is who he is and this is happening to him, all I can do is make it as easy and as. Lmfortsble as I can.
Love and hugs to you, think hard before you tell him reality, only you know how he would take that news.
Since we don't know what "truth" tomorrow brings, I think there's no need to speculate about what might happen. Living in the moment worked well for us.
I agree with rriddle!! We don't have crystal balls (Kind of wish we did)! But if we did, we probably wouldn't like it, hence probably better not to know.....Who knows what tomorrow/later today will bring.....? I personally think this, what is there to gain from saying anything, just make sure all plans are in place, i.e. Peg or no peg, DNR order or not, end of life care plan, blah blah, discuss maybe with hospice intervention as they are well experienced in this, live for today, try not to worry about tomorrow (now all I need to to do is follow that bit of advice myself)!! X
Thank you Helen for your reply, I have had wonderful but sad replies. It's a lot to process but I think I will go with my gut feeling and leave it for now.
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 either of them in anyway of knowing the cruelty of PSP. We have slowly drip fed information as my mum declined preparing them for the next stage. I just didn't think that they 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 parents 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
He has been there and heard all the discussion and knows I google a lot but he doesn't ask. Personally, I would answer truthfully whatever he asked but not insist on giving him any details.
We have talked about death and dying and funerals. He knows he is deteriorating but I think he still believes he can beat it. That is his character. One day he will realise he can't and will give up.
J is the same total denial thinks he will come out the other side of this thinks he will get stronger and get back to normal someday. I am totally mentally exhausted at the moment and the coughing is driving me insane the thought of more years like this fills me with dread x
I had the neurologist explain it Dad. It's his life and I feel he needs to be aware of what is happening. In my opinion he can't make a good sound judgement on his future needs if he isn't aware of what his needs MAY be. How do you ask someone if they'd want a PEG if they become not able to swallow without explaining the disease MAY cause loss of swallowing ability?
I am probably overly blunt but I don't withhold any info I have from docs and I explain as best as I can what progressive means.
My 54 year old son died May 4, 2017 in his home in Los Angeles. January 4, 2017, he was told he had PSP, not PD. This was after his first bout with aspiration pneumonia (taken care of at home with antibiotics). When my son reacted happily to NOT having PD, the Neuro replied, "Oh no, you don't want this. It is a horrible horrible disease". My son asked the neuro "How long?" The reply was 3-5 years. At the time my son was ambulatory, speech was good, etc. Following that appt we stopped for dinner on the way home. The only discussion pertaining to what he was told was, "Now I know how long."
He got his 2nd bout of aspiration pneumonia March 23, 2017 and was in the hospital for 7 days on an IV with no food. There they encouraged him to have a PEG. He was sent home on his 55th birthday....drowning in his secretions. His breathing was horrible. He was soooo happy to be coming home and told me he was never returning to the hospital again, though he felt he was treated well. He hated it there. The next day he was much better. He sat up in his TV room. The gurgling all but disappeared. His sister (15 months apart) had arrived for a long arranged visit with his birthday. The cleaning lady was there, his paid caretaker was there, and an attorney (both my kids are attorneys, but my daughter practiced law. My son passed the Bar but gave up law shortly after a year of practice) that my daughter had invited to come by the house to help her do all the paperwork for my son's trust. My son was happy with all the hustle and bustle.
As the weeks past, my son deteriorated. He knew he was dying. He never verbally expressed it, but HE KNEW . The last week of his life he had suffered a seizure, constipation problems and was given prune juice in the morning, Miralax in the afternoon, and a suppository in the evening....all prescribed by a hospice nurse. I was ambivalent with the directions. That night I had HELP, thank goodness, and all that stuff worked. The next morning he said he did not want to be fed. I opened the conversation.
I asked him if he was AFRAID OF DYING. He said that he was. We started talking about death....all living things die, nobody knows what is on the other side, different religions have different beliefs. I read to him from a book, WHAT IS DEATH? by Etan Boritzer. I had given him the book as a gift back in 2006. I told him that I PERSONALLY got comfort from believing that what is on the other side is positive and that "maybe" his beloved grandfather (who had died in 2010) was waiting for him, but I had no proof, only my hopeful belief.
After a few days of discussing death, he shared with me that he was praying that God would take him. The hospice staff had said that he would last another 10 days (based on his vital signs). He had continued to reject being fed by his PEG. I did not discourage him. On the day he died, the hospice Chaplin happen to come by and he led us in prayer. That night my son died. I was not there. I had expected another 7-8 days of life.
After, I thought to myself did I encourage my son to give up the battle for life or did I support him with his own choice? My son the last 12 days or so had NO intelligible speech, all hand gestures. How did I know he wanted to die? He would form his hands in prayer and point up to the heavens. When I would offer a feeding he would point his thumb down.
I am now at peace with the ending. I think that some times it is difficult to give up what we want...ONE MORE DAY, ONE MORE HOUR....but then do we not rob our loved one? I do not know. I only share what happened between me and my son.
I'm so sorry to read about the passing of your son, he was so young. It's very brave of you to write in so much detail about his last few months. I hope that you have begun to try and build your lives together with your family post PSP. Remember the good times xx.
On this site, all we can do is tell our truth. Perhaps someone will benefit from the sharing. I have good days and I have bad days.....but the good days far outdo the bad days.
Grieving is a process. It takes time to understand what occurred.
The only regret, as I have shared on this site, is not having hired more help. As my son use to say, "It is what it is."
So sad thank you for sharing so lovely. I agree with not saying to much, I think deep inside they are prepared for the end, such a sad subject. George has never really said anything about dying, we have spoken about it. Hopefully the end won't be bad, our painful. Hugs to you all. Yvonne xxxxx
Althea before my husband was diagnosed with PSP and MSA he had been diagnosed with a very rare Leukaemia. He was told there was no treatment for it. It really scared him and he asked the doctor was there nothing that could be done. The doctor put him on chemo tablets. They worked for 12 months and then I noticed he was looking ill again and dragging his right foot.
We went for a second opinion. He was put on a very expensive drug which started to work at once. However before this he was very worried and kept saying if he got 10 years he would be happy. That then went to 5 years! So when the second tablet worked we were both so delighted.
Then he fell and broke his right arm. We went to see the Neurologist and he was told he had PSP with signs of MSA. He asked the Neurologist what they were and what tablets he needed to take. He told him there was no cure! It was heartbreaking to see his face. We had been there before...but somehow this felt different.
He never asked me what would happen to him but we did talk about death. I always said we needed to know what we each wanted when the time came. So we discussed a lot of things.
I never told him what I read on the internet and he never asked but I am pretty sure he knew he was dying. He was told he was in remission from his Leukaemia 2 months before he died and again a month before he died.
By then it was obvious he was dying from PSP or MSA. He knew he was dying as he lay in hospital at the end and I told him if he had had enough it was alright to go. I told him I would be alright...that was a lie! He just nodded at me. I will never forget it and how sad it was.
Only you knows what your husband really wants to know? I never told mine how awful the condition was and he never asked. One thing you will have to be is brave. Goodness knows where we all get the strength to get through this but we do!
What good would it do to tell him. Do what you can with joy . It's not so much denial as it is allowing him to live comfortably and safe....Wwill he have less PSP with full knowledge of PSP?
John asked to read the PSP website when he was diagnosed. He said "not good is it" and hasn't mentioned it since. He has said he won't have puréed food or thickened liquids, or a peg. He asked for a dnr and it is in place and he has agreed to donate his brain (as have I). I believe he will not do anything to prolong his life. That seems fair enough to me. Xx
I thought about it a lot but if it helps the research then it must be right to try and stop others suffering what all we are suffering. But it is is for each person to decide. One good thing today is that our lovely GP has said he will come and see John so I don't have to struggle to get him to the surgery. A small win but an important one! Xx
Such a difficult question. My hubby is retired surgeon. As soon as diagnosed he was googling/researching . I am sure this contributed to his depresssion. Within months he joined Dignitas and he still says this is an option. He talks opening with anyone who will listen about ending his life. On a 'good day ' he has an awareness of his deterioration and he knows how his life is likely to end. I do sometimes think not knowing all maybe kinder. I r respect his need to know but knowledge can bring great pain too.
We are all individuals and I firmly believe there is not a right or wrong way to approach this question. We must just go with our gut reaction and knowledge of our loved ones
Progressive but not predictive, some journeys are difficult, the hospice have been invaluable in rog making decisions for his care, no PEG, no treatment for pneumonnia but UTI 's to be treated, this makes it easier for me and others involved in his care, i feel a degree of honesty and planning is beneficial, but take each day as it comes.
I agree that everyone diagnosed with PSP will have a different way of dealing with the progressive, untreatable and terminal aspects of the disease. My Mum was diagnosed after a year of report g symptoms to her GP. She had had quite clear neurological symptoms for at least three years prior but wouldn't mention them to her doctor. She is now nearly three years after diagnosis so n total nearly seven years of symptoms.
She initially refused to discuss anything to do with the end of her life care with anybody either medical or family. As the disease took more of a hold she agreed to a DNR for CPR and adamantly refused a PEG feeding tube and hospital treatment for any severe infection.
She is still alive and like many of the other people mentioned in this thread she sleeps much if the time, is on a mainly puréed diet with thickened liquids and at the moment the deterioration is steady. Her speech is nearly gone and it is hard to know how much she understands. I think she does zone in and out.
She was terrified at diagnosis but defiant saying she would fight it. Now she is exhausted but still refusing a PEG. I think she knows she is dying but none of us have ever told her. I know she knows but but we all think it wouldn't help her that much now.
it is terrifying enough to witness any of this let alone be the person with the disease, such a cruel thing. I thank God for the local Hospice who continue to be so kind and supportive who helped so much to get the NHS funding for her.
Jean it really does feel like limbo. I am both amazed and appalled at how long this is going for n for. All the time in your mind as to what will happen next and what will precipitate the final decline. Steph x
Dear Steph, your mom is a very strong woman to have fought PSP so defiantly. I'm sure there is a time when the sufferer comes to terms with time ..... much love to you at this very sad time. Althea 💛🙏
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