nelson's story

i am not a carer


My story, like those of many people who live with a family member who has dementia, is not pleasant. In my case, it was first my Nonno (which is Italian for grandfather) and then, if that hadn’t been bad enough, it was my Dad. So my story is about how I ‘coped’ with it as a teenager going into his early twenties – or, perhaps, how I didn’t cope.

It seems that the lesson I learned about myself through those years was that I found it difficult to feel sympathy or empathy for the ‘downtrodden’. This is what I thought was expected of me - with my father being the downtrodden, unlucky one, and me being expected to be sympathetic.

But for me, it became all about the darkness that comes from within yourself, your shadow, as you will. The worse thing is that, if I could rewind time and do it all again, I believe I would act in my shadow all over again.

This is because I am not a carer.

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I learned from my first experience with dementia, dealing with my Nonno, that I simply cannot communicate with people I see as lame or deficient. I am simply not wired for it. To this day, it repulses me to care for people who cannot care for themselves. So I learned that about myself when I was about 13 or 14 years old.

I still don’t believe that my Mum can fully comprehend what feels like – this kind of instinctive,  abhorrent reaction to people who I see as  emasculated. She can’t understand why I can’t empathize. My reactions might be instinctive and illogical, but the feelings are there, they are real for me.  My Mum would always try and get me to act like a caring person, saying things like, ‘Please hold Nonno’s hand’, like she was begging me to do it. I don’t think she will ever be able to fully understand how impossible this was for me, and still is. I have tried to explain it to her – she says she understands, but some of her actions say different. She is not like me. She is a very caring person.

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Dementia affected my Dad’s behavior. He did not turn into a vegetable but there were things that he couldn’t do anymore that were emasculating, like going to the toilet or putting on his shoes and socks. Fortunately I did not have to deal with that. I had to deal with his stubbornness and his erratic mood swings. You see, my Dad was the kind of person that had major personality blind spots that annoyed me to no end. For example, he didn’t want have an open conversation, nor even to be proved right about something: he just wanted to win. The moment you countered his point or argument, he reacted as if someone had called him a piece of shit! It was tiresome, listening to the same rhetoric repeatedly, over years, even when I might have agree with his point of view.  He seemed possessed by what I called “idea pathogens”, that steered a part of his personality into something undesirable. That got worse with the dementia.

This made it very difficult to care for him. In fact, it made me fear and resent him. It made it harder for me to cope with the ordeal, because his personal flaws were exacerbated by his dementia.

There were other problems my Dad had which were made worse by his dementia. This included blaming someone else for all of his problems, not letting anyone tease or mock him, and his paranoid possessiveness about me and my Mum. He never wanted me to leave the house. He was always looking at things in his time and space - demanding that the world fit in with what he wanted. He wouldn’t listen to doctors’ or other specialists’ advice. He just wanted to live in his own world, do things his way.

I was no longer seeing these things as negative characteristics of a person who also had positive attributes. That nuance was blurred: the negative was becoming all that person was. The negative parts of him slowly warped into the whole package.

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I concluded from that young age that the spiritual role of my Dad, as a father, was dead. All that was left was a diminishing shell of a human being that I resented and despised, yet was told I had to care for him. Fuck that! I cannot care for people who are lame, even if they are lovely people. And he wasn’t lovely: this was a person I experienced as a stubborn, indignant human being, who also had dementia.

Twice I completely snapped. I entered into a blind rage. I was throwing everything that I could find at him. What got to me, the second time this happened, was the powerlessness of knowing that nothing I said or did would ever stick with him. I distinctly remember, when I was calming down, looking at him straight in the eye and saying, ‘I am going to be so happy when you die’. That was not in the heat of the moment, and it is something to this day I do not regret, because ultimately that was the truth. I wanted it all to end. The dementia was him now and I wanted it to go away. Now, I didn’t sink into the level of darkness that would make me think about murdering him – but I sort of compartmentalised in my mind that, sooner or later, my Dad was going to die, and it would be a great relief.

I got my relief a year later.

My Dad died at home, from a heart attack, right in front of me. I was upset that he had passed away, yet I was not bawling over the loss. My loss already occurred. His mind had left his body years prior; the body had now left the earth. I had already braced myself for the loss of my Dad quite a long time before, so his death, when it came, did not shock me.

At the eulogy, I did not cry at all. I didn’t feel like crying. My aunt wanted to stand beside me as I said my eulogy out of concern, but I was fine. I even did a card trick during the ceremony.  Everyone was respectful and I was happy about how the funeral turned out. My extended family had helped my Mum and myself prepare for it so it was like a family reunion.

For the first couple of months after my Dad’s death, the saddest thought that ran through my mind was that, for the remainder of my natural life, I would no longer have a father. That thought permeated into my mind throughout the long trips to work. I would try not to forget his voice, as I feared that I would forget him forever.

Time passes. Now I don’t think about him voluntarily. I only go back to thoughts of him when I am reminded by others. I am not hurt, nor do I suffer. I am past all of that. I dealt with the sadness and grief by preparing for it. Had my Dad been healthy and died suddenly, it would have undoubtedly have been harder to deal with.

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To other teenagers I would say that this is one of the hardest experiences that you are going to go through. It is ok to be upset and to feel like a failure if you are not coping. I don’t think I could have done anything to make it easier as I was too busy trying to handle my own sanity through the ordeal. I think many people would have handled it better than me so you can see their stories for inspiration, but that is not me.

I don’t want teenagers and young adults to feel that they have to meet the expectations of ‘super carer’ who is a ‘hero’ and then feel like a failure for not meeting that role. I would like other teenagers to accept that there are dark spots from within, and feeling useless through the ordeal is normal. I think losing your grip with dementia is part of the process and it naturally reveals the ugliness from within yourself as well – and to say that I overcame that is a lie. That is the hardest part of introspection: to look in the mirror and acknowledge that chaotic downward spiral and all that it entails.

It is also ok to think about wanting the whole ordeal to end. To me, dementia was darkness and death so I wanted the light at the end of the tunnel. Having the responsibility of caring for someone with dementia is a demand that is so burdensome that few, if any, would ever take that on voluntarily.

I don’t want teenagers to get diluted stories about how well some people have taken on that challenge and then get them thinking that is the norm. I don’t think it is. I think you see stories that people have posted publicly because they could feel good, because they’d found a silver lining in their experience (and thank God they did) and so they were comfortable enough to share their story online for the world to see. You do see these stories online, out in the open, but the vast majority of these stories are below the surface. An iceberg is a perfect analogy. So don’t feel like you are alone beneath the surface. If it feels like you are drowning, that’s how it is. But when it’s over, you will rise above those icy cold waters. You will be coming up for air.  

In the future, if my Mum goes nuts for whatever reason, I will probably have to sell our investment property to fund her care as I cannot possibly see how I could do it myself. I would hate having to do the day to day care that carers have to do. It would just be too much for me. I am not cut out for it. I would just get resentful and bitter and I may snap again. In fact, I might be one of the few people that truly understands ‘elder abuse’ because I nearly committed this myself. It takes a build-up of resentment that doesn’t subside and my Dad with dementia lacked the social awareness to stop the way he was treating me. And when you don’t give yourself an avenue to release that resentment properly, it creates an emotional explosion inside you. I saw how easy it could be to take it out on the person who has caused you that pain, anger and resentment. So I had been through it twice, before I even hit 23 years of age. I really wish that no one has to deal with that.

I was just relieved that my Dad’s heart gave out on him. I could not imagine dealing with more years of him with dementia. It was a truly hard experience for me