My dad was rushed in hospital today,he's stable at the moment but critical.he has a mask on that is helping him to breathe,

[Robin20]

Is it bad that I think he looks so peaceful,when usually he's coughing and choking on phlem,and forever having his mouth and throat suctioned,I keep looking and thinking,my god if you pull through this,your coming back to torture,I don't think I can do this to him for much longer.

[dorothy-thompson]

Dear Robin20

I am so sorry about your dad and can only imagine how you must be feeling.

But I do not think it is bad what you are thinking, it is the normal reaction of a loving and caring daughter that does not want her dad to suffer any longer.

I would have exactly the same thoughts if it were my husband in hospital.

Take care of yourself

Dorothy T

[clauitur]

Dear Robin,

I understand how you feel. My mom is now in hospice here at home. It has been about two weeks now. Her biggest troubles because of the PSP are severe rigidity and failing vision amongst many other things..... She was and is suffering too. It is a very hard disease to understand and deal with.

[Robin20]

Thankyou Dorothy x

[Robin20]

Clauitur,I don't think I will ever understand psp,I fill my spare time up just looking and searching for answers,I've never in my life seen anything so awful.i actually dream about the suction machine,I really wish I could tell you your mum will be ok,take care x

[laila123 in reply to Robin20]

i to have been looking its seems no one has answerthis is my first time talking about this my heart goes out to you all

[Heady in reply to laila123]

Hi laila123

Is this your first post? Welcome if it is. This is the place that you can kick, scream, plead, cry, whatever you need to do. We will all listen to you. As you can read, we are all in a very horrible place, with no " get out of jail" card! But you will learn a lot from everyone here, we all are going through exactly what you are. Some people are further down the road than the rest of us, but everyone knows what you are going through NOW!

Lots of love

Heady

[Heady]

Dear Robin

I am glad that your Dad is at last having some peace from this awful disease. Our loved ones need more respite than we do, as they are the ones suffering.

You are definitely NOT wrong in your thoughts, we all know that when our loved ones get to your fathers stage, we will be thinking exactly the same! If he does pull through, at least you will have a bit of comfort, knowing that he had a few hours off!

My thoughts are with you at this awful time for you.

Lots of love

Heady

[jillannf6]

hni robin

i too feel fo r u and uyour dad and hope his suffeing is alleviated whilst in hospital

had he drawn up a living willl or gotthe LPA IN place for wha the does and does nto want ot happen to him?

LOol JIll

and hug and xxxx

[Healthygramma3]

My family and I recently made the decision to not have my dad kept on a ventilator. He did not have one of the diseases we are concerned with here, but he had a horrible debilitating form of arthritis that eventually caused him to choke whenever he ate, etc.

Allowing him to finally be released from his prison of an earthly body was the best decision we could have ever made for him. I totally feel your sentiment and you are doing the right thing by letting God have his way without intervening unnecessarily.

Why bring someone back to the torture of a diseased body??

My heart aches for you and your family at this time! It is hard because we miss our loved ones, but it is selfish to not allow them to be released from their pain and discomfort.

I now face this journey with my husband due to CBD, and I have learned much from the long painful journey with my father. Hopefully I will be able to make wise choices for him.

[carolinesimmons in reply to Healthygramma3]

I am so very sorry that you are being hit with a "double whammy." Asking you to go through this twice is heartbreaking. God bless you.

Caroline

[jrock777]

Watching this disease has made me rethink/reconsider my opinions of those who choose euthanasia. I'm not suggesting its the right decision for my family or anyone else's, but I can see why the debate exists.

[Robin20]

Thanks everyone it means a lot,it's been another long emotional day,it's hard watching his eyes begging to take the oxygen mask of that's fastened so tight round his face,there's no change in him,I just want it to end now,because it's going to happen all over again,euthanasia would be a blessing,I watched a film once called a day in Switzerland.and I couldn't understand the film,it was heartbreaking,now I understand completely x

[jillannf6 in reply to Robin20]

i agree robin euthanasia is no an easy option fo r the person - it takes time effort and money(not least) to organisec and i do no twant my nex tflight to be the last one i make ot switzerland!

(the film with julie walters in is amazing and based on a true story)

i thought t about it but decided as my doctors were not supportive to let it go

lol JIll

[jimandsharynp]

Robin, My heart goes out to you. I feel your pain. I know there is a point when you wish the person would just "pass on" and be at total peace. This disease is brutal on all, family, caregiver, and patient. I think for the most part the pain and suffering is equal for all. My first wife had CJD another rare brain disease and I remember when late one night she was struggling for breath I went in the kitchen and prayed to God "Please take her and stop her struggle". She passed on within minutes. These diseases are the toughest of all. Most think Cancer is rough but I think these brain diseases are rougher. At least with cancer there are therapies they can use but with PSP, CJD, CBD, and MSA there is no help or, at the moment, chance of help that will slow or cure the disease. There is no remission which cancer has sometimes. Not downplaying cancer because it is another terrible disease but there are things to help in many cases. Stay strong. We are in this thing with you and if you need help or support just pop in and let us know. Jimbo

[Robin20]

Thanks Jim.and your right,at least with cancer you know what it is,and understand it.with psp there's been so many twists and turns,the odd thing is,this week my dad has spoken very clearly,and he hasn't been able to get words out for months.hes asked me WHY,when he was choking,he's said my name,and yesterday when the mask was taken of for a bit of relief,he clearly said I want to go home,it upset me,and even made the nurse cry,I'd be lost without this site to express myself,to think a few months ago I was enjoying a glass of thickened wine with my dad,do you remember jimbo.so much has happened since then.