Looking for our father's soul not lost to Alzheimer's

Dad has Alzheimer's and progressive dementia.  At the moment, I don't want to go into his history, nor give you his background.  I want to look at his eyes and find the man inside.  Since the beginning of this year he has become more and more agitated, and less and less able to move.  Now, he can't walk, feed himself, understand where he is, speak much sense, he can't move himself, he can't work out what he is or is not doing.  Today, I uncrossed his legs at the ankles for him, because he could no longer do it himself, his thin hot legs felt heavy and fragile, his delicate papery skin vulnerable to bruising and breaking.  He is eighty seven years old.

My brothers and I go and see him when we can.  We are busy and Dad lives in a care home about a three hour round trip away from us all.  We have to make a plan to go there, stay a while, and go home again back to our lives, and I think all of us feel we should be doing more - but what more can we do?  It is hard to see him shouting and in distress, it is hard to see him unable to talk, and we think that this must be put right.  Somebody needs to do something, but the staff explain all that can be done is constantly being done.  They explain the way the diseases progress, and they show us a list of his medications.  We all know, my brothers and I, that the carers and nurses and the Augustinian Sisters that look after Dad and all the other residents, many much worse than Dad, are angels and bring so much love to what they do.  But Dad is so distressed, I say to them, and they say - and this is true - that they all sit with him and hold his hands, and different medications are being sought to help with the shouting.  Your Daddy is a gentleman, they say.  I want to say to them that he was so tall and dark and handsome once.  I want to tell them that he made me laugh when I was little, we wrote poetry together and his was always a pastiche of mine.  I want to tell them that he could sing beautifully and that it was he who took me to London and let me wear blue eye shadow when I was thirteen.

I look at him now, lying helpless on his recliner chair in his room so that his shouting does not disturb the others, washed and brushed and clean with soft blankets on his legs, and I think You are still here, Dad.  You are still in there.  When I say hello and kiss him, he smiles and says hello.  Then he asks me if we should go now.  Where to? I ask him.  But he can't tell me where, he just waves one hand gently back and forth and forgets to speak.

I am looking for my father inside the Alzheimer's.  His eyes are  deep set beneath bushy grey eyebrows, and his glasses reflect the light.  It's hard to find him in there, and the disease has taken away the window to his soul.  But if I say, Dad!  Look at me!  he does, and he smiles, and I can see him again for a second.

Today he was calm and peaceful.  Last time, he was shouting goodbye to me, and telling me he had to let go, it was all over.  A wise person once said that while someone is making a noise, they are still finding a way to get their needs met.  I didn't feel that Dad was slipping away and I wonder if he was articulating his awareness of where he is going.  It's not time Dad, I said to him while stroking his forehead, this isn't your time.  You will do what you have to do when the time is right, and you will know what to do.  But that time is not now, not today.

Come with me, he said.  We will go together.

I will be there, Dad, I said, and I will come as far as I can. 

Today he was calm. There was a silence around him that is new.  Maybe there has been more medication and the shouting has finally stopped.  He seemed soft and wise and old and wonderful.  His hair had been cut, and the carer told me she was going to give him a manicure later.  I have left some magical hand cream with marigold and lavender essential oils for him, and she will rub that into his skin.  Dad took great care to keep his nails smart and clean, I told her.  A manicure is just right for him. 

I had to leave early today, after only an hour with our father lying peacefully on his recliner chair.  I will be back, I said, and he smiled.  We have had a lovely day, he said.  I thought, we have had a lovely hour, and if he thinks it has been a whole day, then I am relieved.  My brothers will be with him over the weekend.  I must not feel guilty about leaving him after just one hour.

Today I visit a client with cancer.  I had to leave Dad and drive an hour and a half back to Bognor for our weekly session.  He is older than Dad and says that he has had a blameless life in the church, so why does he have to suffer with this cancer?  His wife is ill too, with dementia.  Why did God give us these illnesses?  He asks.  I don't know, I say.  And I think, isn't life so strange.  Why is our father suffering like this, when he loves poetry so much?  When he was the only one who agreed that I was a fairy when I was a child? (You always said I was a fairy Dad, I said today.  I wore some net curtains as a fairy costume, do you remember?  Ah yes! he replied, you should still wear them.)

I am painting portraits of Dad, looking for him in his eyes.  I am recording him too so that I can understand.  He never complains, he is gracious and lost and sweet.  I will go back in a few days time, and we will see how things are.

Looking for our father in his eyes.  His Alzheimer's is taking him further and further away from us. Oils on wood.

Look at me Dad!  I say, and the Alzheimer's clears for a second and he smiles,  Oils on wood.