Me & My Dad by Sarah

My father lived ten hours away from me and my dealings with him were a once a week phone call. That's how I liked it. I spoke to him for about ten minutes every Saturday morning and then I got back on with my life. My parents had divorced when I was just two years old, so I don't remember actually living with my father.

Five months after Dad retired I got a phone call from his flat mate who was really concerned about my father's health. I was not really worried and stated that he was a long term alcoholic, so of course his health would be poor. Taking on board this phone call from the flat mate, I made the usual Saturday morning phone call and insisted on pushing past our usual generic conversation; and I realised that Dad did seem a bit confused if I went outside the scope of our normal idle chat. The following Monday I made a doctor's appointment for Dad and organised for a family friend to take him.

I had no idea how sick my father really was. And the next couple of days were a bit of a blur. The doctor rushed my father to the local hospital where he was airlifted to a regional base hospital. In a panic, I packed up my car, eight year old child and dog and drove five hours to the regional hospital. We were at the hospital before the air ambulance landed. I had no idea what was wrong with him and nor did the medical staff, but it must have been pretty serious.

Dad presented with a symptom called Acute Confusion which was very disturbing to witness. He was lying in his hospital bed talking to his friend, Paul, and Dad would repeatedly say to him "Paul is coming to see me soon". My brother (the only other sibling I have) was so disturbed by this behaviour that he ran out of the hospital ward crying and refused to go back in. Dad realised that he had upset my brother and, in my father's confused state, decided that he was not in hospital, he was in hiding because the police were after him for upsetting my brother. Dad would not listen to reason and so it was more comforting for my father to believe that he was in a good hiding place and he was safe from the police, rather than trying to get him to understand reality.

My father was in this hospital for eight days. On day five the doctors told me that Dad was suffering from Emphysema and the lack of oxygen to his brain had caused the acute confusion. I questioned this decision and asked what caused emphysema? I was told that it was caused by his smoking habit (Dad had told the medical staff that he smoked a packet of cigarettes a day). I asked if anything else could cause emphysema and was given a rather blunt reply "smoking is the only cause, he has done this to himself and you should be prepared because he doesn't have long to live". I went on to ask "if he wasn't a smoker could he still have emphysema?" I was told emphatically and impatiently "no". I told the medical staff that their diagnosis was wrong as my father hadn't had a cigarette in over 30 years. And perhaps they "should brace yourselves as you may actually need to do a bit of work to ascertain what is actually wrong with him". After this discussion, on day five, the decision was made to give my father a cat scan and day six they performed an MIR on his brain!

Day eight the MIR results came back to show that sections of my father's brain were damaged. The doctors' new diagnosis was that the damage was caused from alcohol. For goodness sake! Dad had been an alcoholic for 40 years, I think that if it was alcohol related, it might have taken a bit less time than 40 years! I really couldn't accept that it was alcohol, there had to be something else. Against all the professional advice, which was "you will never be able to cope with him on your own", I decided that I would bring my father back to stay with myself and my son. At home, I would be able to find out what was wrong with Dad, make him better and then send him home again. I reasoned that Dad would probably only need a couple of weeks with me, once I fixed him, we could go back to our once a week generic phone call and life would be back to normal!

Silly me! Life didn't get back to normal, oh and ah ... this IS going to be normal from now on! I still had no diagnosis, so how could I fix something if I didn't know what it was? In the meantime I had to deal with an alcoholic that was not permitted any sort of alcohol. A father that I didn't really know and an illness which I had no idea about. But I had all the determination, motivation and the faith in the world that I would make him better! I had to close my business to take care of Dad. I tried to keep it open, but he was just too demanding and needed so much of my time that it was just not viable. This was one of the hardest decisions I have ever had to face.

Just to get Dad out of bed was a massive task. "Yeah, I'll get up in a minute" and he would fall back to sleep. I understood that his brain had been damaged and required more sleep than normal to repair itself, but this is two o'clock in the afternoon! "Dad, you have to get out of bed mate" and he would respond with "what do I have to get up for?" He had a point. How was I was going to make him better if I couldn't even get him out of bed! But I would continually try.

Basic every day tasks were too difficult for Dad. He couldn't make himself a cup of coffee or have a shower without assistance. If I didn't pull the bed covers back then he would sleep on top of the bed, as it was too confusing for him to pull them back. Dad's confabulation and anxiety were extremely difficult to bear. He would focus on one thing over and over "where's my jumper, I need my jumper...." and he might be wearing his jumper. For the first nine months, Dad believed that he had gone AWOL from the army and he was at my house hiding from the Sergeant Major. Dad believed that he was to be court marshalled if they found him. Dad has never been in the army! I would try to get him to see reason but that would only make the situation worse, so I would just say "it's alright Dad, I spoke to the Sergeant Major and he said it was ok for you to be here". And then we would have phantom conversations about the Sergeant Major and his army buddies.

Just simple things, like taking the lounge covers off to wash them, would upset Dad. He would become disoriented and say "this is not your house, I know what your house looks like and it's not this. Where have you taken me this time. You're just lying to me. Stop lying to me ..." Needless to say I don't wash the lounge covers very often!

I had no one I could turn to. Initially, the community nurse would come to visit me and ring me, however she was promoted shortly after Dad came to live with us and her replacement provided me with nothing. I didn't hear or see her in months, even though I had left messages and tried to contact her several times. The only medical advice I got was "the brain is a complex organ and we don't understand it ... if you are not coping then institutionalise your father". If I hear those statements one more time I think I will scream!!!

Help lines and services I have found to be a complete joke. I rang up the Alzheimer's phone line once, and lied and told them that my father had Alzheimer's. If you do not come under their umbrella then you are not suppose to access their services. I didn't have a diagnosis, so I didn't come under anyone's umbrella. But at that point I didn't care, I just needed to speak to someone. I got through to this lovely old lady who listened to me tell her how Dad repeated himself constantly and how I could see myself just taking his head and bashing into the table several million times just to shut him up. I was expecting a list of ways to deal with my situation but all she said was "just pop something sweet into his mouth and that will distract him" Excuse me! Are you for real? Is this really the best advice you have or am I on Candid Camera? Cause if that is the best you have then I am in real trouble! And how many lollies do you think it will take? Are we talking a gob stopper perhaps? Yes, let's give him obesity as well, shall we?

Don't get me wrong. There are plenty of phone numbers out there. I call one phone number, they give me another phone number to ring. I ring that phone number and they give me another three phone numbers to ring. I ring those three phone numbers and they give me more .... until I end up back at the same phone number that I started with. And having no diagnosis excluded me from accessing services because their answer was always "... we can only provide services for 'x' condition, our funding is only very limited " etc blah blah blah.

But even when I got a diagnosis and discovered that I fell under the Alzheimers' Support (see I didn't lie after all), all these services that I thought would suddenly become available to me, were not there anyway! "Well, it all comes down to funding and at the moment the federal government is saying that the State Government should handle this and .... blah blah bloody blah". Is it the State or Federal Government that I take Dad's vocal chords to, which I have just ripped clean out of his throat, because I couldn't possibly hear him repeat himself one more time

And do not get me started on respite care. Dad tells me 50 million times a day that he wants to go home. I just deal with that. However, if I put him in respite care (that I have waited six months for) I have to sign an agreement that I will come and pick him up straight away if there are any problems. One of these problems is if the patient asks to go home, then they have to ensure that he returns home as promptly as possible. I have to agree to abide by the rules otherwise he could not attend respite. Needless to say, I have never put my father in respite because he just wouldn't want to stay!

Dad has had to have numerous operations and those hospital stays are an absolute nightmare. I remember one particular hospital where I received a phone call from his doctor asking me to come into to the hospital as they were not able to cope with Dad. He had been there less then 2 hours! Dad's dementia specialist wasn't treating Dad like a real person. The doctor would say to me, whilst Dad was sitting beside me "Your father does not seem to have the ability to communicate normally, has inappropriate behaviour, and my professional advise is that you should institutionalise him". I would say "Doctor, he can still hear you, he is not deaf, there is nothing wrong with his hearing!" This doctor once tried to give my father a prostrate examination, whilst I was in the room. Needless to say we didn't see this doctor again after that.

What these professionals don't understand is what happens when we walk out of their surgery. I am now left with this man who has just been completely humiliated and is extremely angry but cannot remember why. Who does he take this out on? - Well me of course. Whilst Dad still thinks Gough Whitlam is prime minister, he is still physically very strong and has a history of violence. Now I am scared for my safety and my father believes that I am involved in a conspiracy to have him locked up. Thank you doctor, I really appreciate that you have made this mess and left me to deal with this.

The only useful piece of advice I have been given is, if I am really feeling that bad that I don't think I am coping, then I am to ring an ambulance and have them take Dad to the hospital and then refuse to pick him up. Apparently the hospital is not permitted to release patients such as my father without a carer. But wouldn't that be a lovely situation for everyone involved. As if I don't suffer enough guilt on a daily basis as it is!

Home Care has been the only service that I find helpful at all. And for all their computer problems, staffing issue and OH&S protocol (which is not the word I would normally use), they are fabulous. If it were not for Home Care, Dad would either be in a body bag or an institution. I did not get Home Care in for the first six months, because I was still thinking that I would fix him and send him home. Or at the very least, I could deal with Dad myself, I didn't need help! But I am so pleased that I did ask for help because there is no way that I could do this all on my own. And why should I? In the first couple of months, some Home Care workers did not believe that there was anything wrong with my father, because he was so good at covering up the condition.

There was one lady in particular who had been coming for two hours a week, four weeks in a row. She was a lovely lady, but unfortunately we don't get to see her any more. On the fourth visit I sat down and had a cup of tea with both Dad and this carer, close to the time when she was leaving. Dad started with his usual questions and repeating himself slightly, not nearly as much as he would if we were alone, but enough to know that he wasn't quite right. I walked her out to the car and she said to me "Look, I have to be frank with you, I really didn't think that there was anything wrong with your father and that you were rorting the system. But when you sat down with us today, it was the first time that I had seen your father repeat himself and be so confused. I can see now why you need help and to have a break from that".

I explained that what he had done during that cup of tea was nothing compared to what he was normally like. But this carer had my father playing Trivial Pursuit, with all the coloured pieces and my father is completely colour blind! This is no reflection on her, this is totally a reflection on how well my father can hide his condition if he wants to and why his illness was not picked up sooner. The saddest part is that if the illness was picked up sooner, my father may have recovered.

As a distraction from the endless rut of monotony, I focused on our animals. Before Dad came, I had a gorgeous kelpie (who is my surrogate daughter), a budgie and various breeds of fish. After Dad got here I decided that I wanted a little lamb. She is a wonderful distraction and Dad enjoys her as well. And then somehow we ended up with a nasty male Muskovy duck. He was so beautiful as a little duckling and now he has grown up to be extremely territorial. The interesting aspect to these animals is that Dad cannot remember anything that has happened in the last ten to fifteen years, but he has never forgotten the animals names nor the nicknames that he has given them. Obviously the lamb's nick name is "chops" and the duck's nick name is not fit for publication. Dad often calls the dog over and says "come here, you're a good girl, you wont lie to me like everyone else does". The animals have been a wonderful support, for both of us, they have a great calming effect. However, they do create more work for me to do.

Dad's aggressive behaviour was the one of the hardest obstacles I face. I have always been quite scared of my father's violent nature, and now I have a violent person with brain damage! But the day my father threatened my son was the day that this all changed. I calmly took my son up to his room and made sure that he was comfortable and I went back to my father and released fifteen months of pure frustration, anger and resentment. My father, as damaged as his memory is, will never threaten my child again, that you can be sure of. I spat out some really nasty, hurtful statements. Statements such as "you are not here on a holiday you half wit, your brain is **** and if I kick you out, your only option is a mental institution where they will drug you all day until you are a vegetable...Probably what you deserve you selfish *****. Don't you ever threaten my child again otherwise ...."

I had never confronted my father with any such reality. In fact I would allow him to believe that he had just come to visit us for a holiday and that he would be going home next week - it was just easier. My son takes great delight in the fact that he could hear my threats and 'reality checks' from twenty metres away, through numerous closed doors. The next day I went to my GP and had Dad prescribed medication to control the violence, and to my surprise they work! There are absolutely no side effects, not even slight drowsiness, which was always a concern of mine. And the best that Dad can do now is "well stick it up your ****". Whereas before he would throw things and chuck tantrums every couple of days. Life is so much better with these pretty purple tablets

My father had, and still has, absolutely no interest in anything that does not involve a pub or alcohol! But here I was trying to make him healthy, totally against his wishes. I organised gym visits and personal trainers. I did all the alternative remedies like herbs and vitamins. And he fought me every step of the way. What do you do when a fully grown man says "No"? Well, I would just wait ten minutes until he had forgotten and try again. The answer would still be "no", but I would just keep trying. In the end I realised that I had to be a litter bit smarter about this Dad needed to exercise and the pub was almost a kilometer away, so I give him $20 and he walks to the pub and home again. Let me stress, I am encouraging the walk, not the alcohol consumption. But it's a win win situation for both of us. I get two kilometres out of him every day, which would not be possible any other way, and he gets his eight middies at the pub (I have lined up the bar staff to make sure he only gets light beer).

Dad had been ill for nineteen months and still no diagnosis had been made. I searched everywhere and came up with all sorts of theories and remedies. It was after another long session on the internet, searching for answers, when I came across Korsakoff's Disease. It fitted Dad's symptoms perfectly. I rang our local GP who, after some time, got back to me with confirmation that I was correct. In realistic terms, having a name for the condition does not change anything, but at least I know what it is. I could finally make some long term plans and come to terms with the fact that Dad was going to be living with us for as long as I can cope with it. He is not going to get better and I need to deal with it.

I have changed a great deal. I no longer think that it is my job to be orientating my father constantly. I have finally realised that no matter how many times he asks me "so what am I doing here?" he is never going to remember the answer. Now, if he doesn't get out of bed early, I am grateful! I no longer feel guilty when I explain to Dad that I do not have the time to answer his questions at that point as I have something else that needs to be done, and that I will be back shortly. And I no longer feel guilty when he shouts out at me "well how am I suppose to get unconfused if you're not going to help me?" I have also learnt that Dad's condition is not my problem and therefore I cannot fix it. My job is to make him as comfortable as I can and try to be nice to him, even when he asks me that same question for the twentieth time in as many minutes.

I believe I have worked through my feelings of anger, isolation and "why me". And now I am currently trying to decrease my levels of frustration, which will take some time I am sure. But I think I have established a fairly good life for all three of us. I am now comfortable enough to start building up my business again which makes me feel like I am still part of society. It will never be a million dollar business, but it gives me a reason to get out of bed every morning.

My son and my father are developing a relationship (in a strained sort of a way) and most evenings they play a game of cards together after dinner. I actively encourage Dad's old friends to contact him, but unfortunately most have stopped calling now. My brother doesn't contact Dad, not even for his birthday. But Dad does alright, I have given him the large granny flat at the back of my place which he has all to himself. He goes to the pub almost every day, he has more friends here then he ever did at his old house. He gets two newspapers to read every day, there is always fruit and light beer in the fridge and he gets a good solid meal every night. He has his daughter and grandson around him most of the time and the menagerie of animals to entertain him. I don't think he could ask for more than that!