It's been a couple of months since I last posted. Since then my husband Tony has declined further. Just over a week ago he was taken to hospital with a high fever, which turned out to be pneumonia, caused by food/fluid aspiration. I knew what he'd want in that situation, as some years ago (before he was diagnosed with LBD but when he must have realised something was wrong) he wrote a 'living will' to say that if he was in a situation of being totally unable to feed himself or respond etc., and if two doctors agreed he would not improve substantially, he did NOT want to be given life-sustaining treatment.

He is in a very busy, over-stretched hospital, though, and it took me four days of constant hassling before i could see a doctor - and then only a junior registrar. In the meantime they had him on antibiotics, glucose drip, extra doses of Sinemet as he was so rigid, and latterly a nasal/gastro tube. The antibiotics worked: his chest cleared and his temperature returned to normal - but he was totally immobile and unresponsive, and we (myself and our children) knew he wanted out. The doctor was sympathetic, but said they needed to test his swallowing reflex before making any decisions, and that hadn't been done yet. That was last Friday, and nothing new happened over the weekend. He just lay there attached to all these tubes.

Yesterday, armed with Tony's living will, I finally managed to get another interview, with another doctor (he's had three changes of ward since he was admitted), who took my concerns seriously. She read through the document carefully, and reassured me that Tony's wishes complied with hospital best policy for patients in his condition. She said that had it been up to her she wouldn't have put him on the antibiotics in the first place, and she said there was no point continuing with the Sinemet as at this late stage it would have no effect. She promised that she would authorise removal of all medical treatment from now on, and he would just be kept comfortable, with a little morphine, frequent mouth-moistening, and general care.

A wave of relief washed over me - followed by unexpected waves of grief. I thought I'd cried all my tears over the past year or so, since having to give over his care to others. But knowing that he's going to die very soon is still heartbreaking.

But I KNOW we've done the right thing by Tony. He will soon be free!! When I told our son he said he felt sad but also weirdly excited. His dad's long years of suffering will soon be over, and we can remember him as he was before this dreadful disease took hold. And he's ready. When our son visited him last Sunday, he opened his eyes on hearing Rowan's voice, and looked at him; and a tear rolled down his cheek. That's the first tear he's shed in a long time. We think he was saying 'please get me out of here', and also goodbye.

Now we're waiting, as Tony slowly slips away. We hope the nursing home will take him back and look after him to the end - for all its faults, there are at least staff there who know him and are fond of him, and the surroundings will be peaceful, and we'll be a lot nearer for visiting.

Maybe the hospital would have taken this step fairly soon anyway, but I'm sure the living will helped them to take the decision sooner. I don't know what the legal position is in the States (we live in the UK) but certainly it's a really great idea to have such a document that states clearly what your wishes would be in extreme circumstances. I'm going to get one for myself, and both the children say they want to make living wills for themselves, too - even though they're still in their twenties.

I'll go in again today, with our daughter, to see him - and this time I'm sure it will be a less distressing experience, knowing that he's being given some dignity at last, and peace to go in his own time.

I can still hardly believe we've got to this point! I keep crying. But he's in God's hands now, the best place to be.

Love and strength to all of you who are nearing this point with your loved-ones.

Hilary

You have such courage fighting for his wishes. I hope all is peaceful and without pain.
Take care
Sharon