"One year without falls........BUT"

Dear Strelley

I understand perfectly and we are in the same position. My husband was diagnosed in 2010 but like so many others has had the beginnings of PSP since about 2004 or 5.

I do not want any interventions for my husband, we have spoken about it together before and he was of the same mind, he just does not want to be here.

Take care

Dorothy thompson

Having seen my brother-in-law's condition develop, albeit with PEG feeding, I would go along with the views on "no intervention". He has been PEG fed for nearly two years, and while there have been a few moments of apparant contentment during that time, I would say that the unpleasantness of the condition has meant that his ordeal has been unwisely extended. Now that the time has arrived when consideration has to be given to discontinue the PEG feed, it is now left with others to make the decision. For his loved ones, that is of course a huge challenge.

Dear Strelley,

Yes I digress, with good reason...

I recall reading a lengthy UK report that included details of what people thought of the term 'carer'.

Much was dedicated to responses from family. I recall people stating the terms 'carer and caregiver' used to describe their present occupation had no meaning. It was felt to be too generously used and did not fully encompass the difficulties encountered. Some felt 'caretaker' had become a more appropriate title as it suggested 24 hour attention.

When dealing with PSP - I find it difficult to support any of the three - carer, caregiver or caretaker.

Life circumstances now have given us all a miriad of titles and at the top of the list for I think yours is 'Devoted Angel'. Thank you for continuing - during such a difficult part of your life journey to impart your knowledge, thoughts and life experiences.

Regards,

Alana - Western Australia

N.B. I lived with my grandmother for a while who was a canon and I am confident she would endorse the title I bestow and the difficult decisions we are all having to make.

Hi Tony

Most of us here will emphasise with you 100%. Due to excessive falls as you know my lovely Mum spent her last 3 years in a wonderful residential home. She set out in her advance decision that she didnt want peg feeding along with DNR. Her wishes were met with no arguement or hassle ( When Dad was given 24 hours with respiratory pneumonia because we didnt have advance decision the hospital insisted on treatment for 48 hours before I could find a doctor with some common sense) What I haven't yet shared on here since Mum passed away 6th September is how quick the end came, it was such a shock. She had been having trouble opening her jaw wide enough for teaspoon feeding a few weeks before, I was in the process of bringing her neurology appointment forward when literally overnight she began having breathing difficulties and was rushed into hospital.

The hospital kept Mum comfortable via a meds driver, she did wake the following morning around 5am pulling at her oxygen mask. By holding her hand I asked her yes and no questions to make sure she felt no pain. She managed to kiss me and repeat my I love you's. After she fell back to sleep she never regained consciousness and passed away peacefully 5 days later.

So as you say take every day at a time, I have such admiration for those of you who take care of their loved ones at home, no one can imagine how demanding it can be on your on health and sanity. After 6 years of Mums battle with PSP I'm still numbed by how quick the end came.

You say your lovely wife says she is ready, 3 days before mum was rushed into hospital she told me that she'd had enough, for the first time in years I just lay my head in mums lap and cried, instead of maintaining my poker face. Maybe we both knew it was almost time to let go.

My thoughts are with you often my lovely, you are a very special man.

Lots of love

Jo xxx

Yes Strelley, I'm sure most of us understand.

A few weeks ago my husband was given a booklet from the hospice in which to record his wishes for the future, resuscitation, peg feeding etc. He wouldn't discuss it so the booklet remained incomplete. After a meeting at the hospice last week, he was finally persuaded by the nurse to look at it with me. The day before we had both held my father's hand as he gasped his final breath, not from PSP but a chest infection at age 96. After seeing the way dad suffered at the end, I was surprised when my husband said he wanted all the interventions he could have. I asked him if he really wanted interventions if he was suffering and had no quality of life. With difficulty he said he did because, "I don't want to go without you". He can't understand what it's like for me to see him totally dependent on me. I love him dearly after 42 years of marriage, and don't want him to leave me, but I don't want him living if he is suffering.

I am trying to stay positive for his sake but it's getting harder.

I've learnt a lot from your posts Strelley and thank you for them.

Best wishes to you both.

Nanna B

Certainly understand your position. Your care giving is taking it's toll and there's no need for a guilt trip.

Dear Strelley - vent away.

You give so much informed help to so many people - can that be of comfort to you when you are feeling alone? There is quite a difference between feeling alone and feeling lonely. Although she may not be able to say so, your wife will know that you are there, with and for her.

My very best wishes on your journey together.

Mo

Dear Strelley, So sorry to hear that you are rather down in spirit at the moment. Am in the same sort of spot myself just now. My father is in a home as I just could not cope with both parents in hospitals beds in my living room. This was five years ago, but I never expected the turn of events with Dad having PSP. Mum had Altzheimers. I am their only child and have always been close to them.

It is a really weird experience in as much as we know death is inevitable, there is no cure, probably the kindest thing is for death to come swiftly and easily with absolutely minimal suffering and yet I trawl the net to look for help and try to think how I can ease his path and keep him with us for as long as possible, but it is a losing battle. To come to a state of acceptance is hard, and to have to watch the suffering along the way is difficult to bear. We must, I suppose expect these down times; but just, simply to share these dark moments is a comfort and a relief, I find, so please do turn to us for support. You have given us so much.

Do you live in Australia? Australia seems to have 'got it together' better than us here in England, it seems to me.

Dear Strelley...I've been wondering where you've been the past week...looking out for your usual friendly informed posts without result. Then there it was...our Strelley has got the primary carers blues and rightly tells us. Now I just hope when you see all the above loving, sympathetic messages let you will realise that you are NOT alone. No way. And you're right about intervening indefinitely....to extend a quality of life that's quasi-non-existant.

My bride of 54 years lived just two years after diagnosis of PSP leaving this planet at 73. How can a personality as strong as hers, still with all her wits about her, possibly come to terms with what the future holds...suffering

mentally as she sees her body gradually disappearing? Not managing to do the slightest thing for herself.

Each day she wanted it to be her last. She did not want to go on. Who can argue with that?

Then one morning I awoke and she didn't. Her wish had come true.I breathed a sigh of sadness and relief for both of us.

All auto -immune orphan diseases are ghastly ...but I don't think I'll ever get to see anything as horrendous as what ravages PSP/CBD cause....it's in a class of it's own.

Let's all join hands in the hope that our PSPAssociations everywhere will continue the fight against PSP and rid the world of this malady.

Lastly Strelley and your dlw keep courageous in the face of it all. And for everyone's sake keep on posting...WE need you too!

very sincerely, brian

Strelley thank you for sharing , It Is a great place to vent .

Take care of yourself

Deidre in BC

DEAR STRELLEY.

ASYOU KNOW IT IS ME WHO HAS THIS WRETCHED DISEASE AND MY DARLING HUSBAND WHO IS MY STRELLEY .... PLEASE DONT GET DOWN YOUR LOVELY WIFE IS AS MUCH IN LOVE WITH YOU AS EVER AND YOU WITH HER -IT IS WITH SADNESS THAT I READ ALL THE TERRIBLE STORIES - A HUGE THANK YOU TO ALL OF YOU THAT HAVE TO DO THE DONKEY WORK OF CARING AND DO NOT EVER COMPLAIN

MY LOVE TO YOU ALL

SHA SHA

Dear Strelley

As you can see we all understand how you feel. My thoughts are with you. I'm grateful for your contributions to this site and hope that all these responses give you some comfort.

Hopefully you are feeling more positive today.

Take care.

Maddy