Treated?

Said the doctor. There is no treatment for dementia. That is if he HAS dementia. She is not a psychiatrist, just a student on an exchange programme for six months. She made me feel there may be light at the end of the long dark tunnel I have been crawling through for several years now,she was kind in the world where I have no friends left, she gave me hope when you were dismissive,so do not take it away from me,I believe her and trust her judgement implicitly my husband has dementia there must be something that can be done for him I want a referral to the psychiatric hospital to see the same doctor again,I said quietly with a steel in my voice. We looked at each other. He knew I was never going to let him dismiss me again. I want him to have some blood tests.Please come and see the nurse. Yes.But only by appointment.Any future visits to the surgery must be by appointment only.My husband cannot handle waiting. I did not elaborate.I knew his colleague was going to tell him what happened in the waiting room. The doctor opened his mouth like a carp catching air, but said nothing. Yes, he knew I was never going to let him dismiss me again.

I get the call.

About three weeks after the visit to the Mental health unit there was a message on the answering machine summoning my husband and I to the GP. I rang and asked if I could make an appointment. No.You come and wait your turn. With a sense of unease I got Olly ready and at 3.30 we were outside the surgery.There were several people waiting already. Why are we waiting,asked my husband angrily. For the door to open and then we go in and sit down. How much longer? Not long, about 25 minutes. All right,then. Two or so minutes later - you said twenty five minutes,it is now twenty five minutes and we are still here.You are a liar,I am not waiting. He marched off in the direction we came. I followed him. Where would you like to go? I don't know. Let's go and have a lovely cake and a cup of coffee. I took his hand and slowly we made our way to the nearest patisserie. Shall we go back to the doctor now? If you say we must go then we shall go. The waiting room was full.We found a chair for him to sit down,I stood beside him. Please,God,let him be good, please God, let him be good. Why do I have to wait? To see the doctor. How long. Not long sweetheart,maybe half an hour. For a healthy person half an hour passes in a flash.For someone who has lost sense of time,for whom nights became days and days had disappeared into oblivion, half an hour is a lifetime. I didn't want to come here.I am not ill. You are ill. He punched me in the thigh. He hit a massive old bruise. It came faster than I had expected. I almost lost balance.The woman sitting next to me got up and offered me her seat. Thank you so much. My husband pinched the skin on my hand and twisted it. I flinched and involuntarily tears filled my eyes. You cow, he screamed.You are ill, not me. Look, you have black hand, you need a doctor,not me. My hand,like my leg, was covered in painful bruises. He kicked me in the shin. Sweetheart,let's go home. Come. He was not listening and I knew better than make him do anything until he stopped screaming. Do you want to fight, he shouted at the young man siting opposite,got up and raised his fists towards him,abuse spurting out of his mouth. Please,God, don't let him punch anybody here,please God, let him hit me but not anybody here. For Christ'sake, why doesn't the doctor take him in, said the young man to the receptionists. They looked at him blankly. I would let you go,but I came after you,he turned towards me.Compassion and pity in his eyes. Every-one else was silent. The doctor in the room next to the reception opened the door,looked at us and closed the door without saying a word. Finally our name was called. I believe you have complained about me,said the doctor.Why didn't you come to see me again if the things got so bad,he continued,not allowing me to say anything.Well, now you are here. So what do you want to do. What did I want to do? What did I want to do?At that very moment just for a moment what I wanted to do was to say to him - you are not fit to be a doctor,you have neither knowledge nor compassion to deal with people. I wanted to. But I did not. He needs to be professionally assessed and he needs to be helped. Treated.

28/12/2014 12.31 Pacific Daylight time

"People all around,but inside me endless emptiness without boundary,the void at times unbearable,yet borne it must be,or life would cease to have meaning and without meaning the unbearable would become unlivable,and live I must,and hope I must,hope that joy of living will return", I wrote almost two years ago now. How do you measure pain? How do you measure grief? Hatidza Mehmedovic still mourning the sons killed in Srebrenica in 1995. Her beautiful face bearing centuries of grief of all mothers who had lost their sons in senseless wars. The mother of the little boy Ben who had disappeared on the island of Kos. The nights she longs to hold his tiny body in her arms and they will always be empty. Day after day the longing,the pain. The abyss of nothingness. And the guilt,the guilt crushing until you cannot breathe.

Coffee and a cake.

Did I answer all the questions well,asked my husband eagerly. I know everything,don't I? I am very intelligent,aren't I? Yes,dear,you are very clever. I love you so much,he said and gripped my hand firmly. I didn't respond. He wouldn't have heard,anyway. Wrapped up in his own world he was thinking about the cake he was going to have soon. There were no taxis to be had near the hospital and ordering one would have been too much of a palava. The bus stop was not far and a bus dropped us off just by a delicatessen I was familiar with. It was a pleasant place to sit down for a while. I was to sit in the same soft comfortable chair many more times with my husband next to me and many more times alone. The whole experience was a big adventure for Olly. The day was going well. He was brimming with pride as he sat down looking around,smiling. This is my wife,he said.When I die I want her to marry a builder.Are you a builder? he asked a startled young man. I burst out laughing.I am so sorry,my husband likes to joke a lot. The young man smiled. What was I to say? That he was not well? That often what he said made little or no sense? That he had dementia? Adults had no idea what dementia meant,let alone young people, as I was slowly finding out. I quickly learnt never to explain and never to complain. We walked home. My husband loved walking. Throughout our marriage we would often go out for long walks in the evening together and when I had things to do or was too tired, he would go by himself, it helped him sleep. It was a good day for both of us.

There must be something I can do

I kept repeating to myself. The next day I said to my husband - we are going to visit someone in a hospital and then we will have a lovely cup of coffee and a cake - trying to sound lighthearted. My husband always detected the slightest anxiety and worry in my voice,he always knew when I was unhappy and even when my heart was crying I would force myself to smile, so that I would not set him off. There is a hospital not far away with adult mental health unit and this was the place where my quest for answers was to begin. And so we went. The door to the hospital firmly closed,no casual visitors allowed. I explained to the porter at the door my husband was not well and I came to seek advice. He let us in. We walked the corridors reading the names on all doors to see where a psychiatrist on duty could be. A pretty young woman approached us and asked if we were looking for someone. I said no-one in particular,just a doctor who would talk to my husband whom I thought had dementia. She looked at me intently.I am a doctor, Italian, here for a six months placement.Would you let your husband talk to me? Oh yes,yes,I said with relief. I was just going to have lunch,but it can wait,please come with me,she continued. We followed her. She showed us into a room and brought a sheet of paper and a pen. She explained she wanted my husband to answer the questions on the paper without any help from me. With every wrong answer her lovely face became more and more concerned. They finished and she said quietly- he has dementia. What can you do to help him? What can I do to help him? She took my arm and pushed up the long sleeve of the sweater. You have bruises on your neck.I knew there will be more.Does this hurt,she asked pointing to the light and dark blue stains interjected with black. Yes. May I,she continued and lifted up my sweater. Oh my God,she said,oh my God. I couldn't help noticing you were limping. Yes, he broke my toe when he threw a television at me and I haven't been able to see a doctor. It is going to get much worse,she said quietly. And unfortunately there is nothing more I can do myself at the moment. Your husband has to be officially assessed,his GP needs to initiate the whole process. His GP. I then gave her a brief rendering of my conversation with HIS GP. Then there IS something I can do for you,I am going to contact him requesting his co-operation. And so she did. A chain of events was set in motion that so often made me ask - how am I going to get through this. How am I going to get through another night,another day. Because nothing, nothing had worked out the way I had expected and hoped it to be.Nothing.

This was the morning the long lonely fight for my life has begun.

For several years the man I had known for over quarter of a century, has been changing. The change in him was slow but steadfast. It was not growing old change. It was unpredictable, frightening change. The odd kick,a painful pinch of my skin,raised hand ready to fall. The man I had loved for so long was in front of my eyes turning into a stranger. At night he would sit for hours on the edge of the bed with his head in both hands. There was very little I could do to help him sleep other than ensure the fridge was always stacked with the snacks he liked,ice-cream being the firm favourite. He was never a good sleeper, we had separate bedrooms throughout our life together. But this was more than just not sleeping well. This was his night life acquiring a new dimension,quite disturbing,quite unsettling. Something in him was very wrong. Several times I asked if I could go with him to his GP. No,he would reply vehemently. What on earth for. What could I tell him? That so often I was overwhelmed by uneasy feeling of doom,that I was afraid of him and was afraid for him. That I so wanted my old Olly back. He promised he would talk to his doctor about the violent outbursts,about the nights becoming a nightmare, at his next visit to the surgery. But the visit changed nothing. So I wrote the doctor a nice letter asking if I could come to see him. He agreed but I felt he was not happy about me taking up his valuable time. I explained my concerns and one after another he dismissed them saying this is what getting old is,we do become less patient,more aerated,and we do lash out in anger as we grow older. And that I should try and not irritate my husband and avoid him when he gets nasty. I listened in disbelief. Nothing made sense. But he was the doctor and I was not even his patient. I thanked him and left. The verbal and physical violence became more and more frequent. My body was black and blue. And when one day he threw a television at me and it fell on my foot breaking my toe, I asked myself - is this going to be my life until the day one of us dies? This is not old age. Something is desperately wrong with my husband and I must find out what it is. I went to the library and took out every possible book on ageing. And slowly,slowly I came to a conclusion that he was suffering from dementia. Armed with the knowledge I went to the doctor again. I showed him some of the books and explained what I had learnt and how my husband's behaviour was beginning to make sense. I said I was sure he had dementia. The doctor was furious,with every word his voice more and more shrilled - I went to medical school for five years and have been practicing medicine for fourteen,you go to the library,read books some quacks may have written and suddenly you are a doctor. There is nothing wrong with your husband. Are you here because you want him locked up in a mental hospital? Wishful thinking. Without a word I picked up the books and left. I was feeling like a prisoner standing with my back towards the wall waiting for the firing squad.. No,this cannot be. This is all wrong. There must be something I can do.

No,this was not the morning I was going to let my husband kill me.

I could not stop crying. Tears turned to sobs and I was wailing like an animal. My legs gave way but I had no strength to pull a chair closer and was afraid to sit down with my back turned towards him. I was clinging with all the strength I could muster to the table and when I could hold no longer I collapsed onto the floor shaking uncontrollably. He stood over me staring incomprehensibly,the look I had seen so many times before and was going to see many more times again. I am sorry,I am so sorry,I am so sorry,he kept repeating. Did I hurt you? I am so sorry. But it is YOUR fault,you shouldn't make me angry. Promise you will not make me angry again,promise you will not turn your back on me again. I promise I will not turn my back on you again, I said. Because I know the next time the knife you are holding in your hand you will stick in my back. And I will never give you the opportunity to do so, never,I continued silently. No,this was not the morning I was going to let my husband kill me. This was the morning the long lonely fight for my life has begun.

It was a morning like any other

yet a morning like no other.The footsteps were faint,the odd creaky floorboard the sound of which I got accustomed to over the years and had grown to love,then the footsteps  became louder and closer. I turned round and said smiling-good morning,monkey. His right arm shot out and the hand fell on my face, the thick of the palm hitting me in the right eye. Rooted to the ground I felt my eyes swell up. He came closer,the fury in his face intensified,ready to pounce again. This time he is going to kill me,I thought.Unable to move I was looking at him awaiting my fate. Staring at each other like a hunter and his prey,tears running down my cheeks,the pain in the eye making its presence.  Kill me,I whispered,get it over with,do it.It is all your fault,he screamed. What have I done? You shouldn't have turned your back on me. I was making breakfast,scrambled eggs with onions just as you like them,and had to wash some dishes,I said, not letting go of his gaze, the instinct for survival kicking in and getting stronger and stronger. This was not the morning I was going to die. No,this was not the morning I was going to let my husband kill me.