Loss, Pain and Dementia by Irene Jones

I’m always careful to say my partner of 35 years ‘died’ just over two and a half years ago. It’s probably more common and maybe more genteel to say ‘lost’, but for me the distinction is critical.

I started ‘losing’ Alan somewhere around 2003-4, he didn’t die until 2017. I didn’t realise he was disappearing, because the changes in his personality were infinitesimal. He had stopped being Alan so gradually, I’d not seen it. He had many health issues. He was immobile and incontinent. (Not usually spoken about but something many carers deal with). My life was full of doing everything and dealing with daily - sometimes hourly, crises. I hadn’t noticed we were no longer sharing things. Laughter had disappeared. He became more demanding, more critical. I just reacted emotionally and kept getting hurt. I went to the GP but Alan, like many dementia sufferers, would rise to the occasion. Polite, able to answer simple questions, charming. I walked away wondering what was wrong with me. This is a standard problem with those carers dealing with a partner, husband or wife. Only people who live intimately on a daily basis, notice the small behavioural changes that flag dementia.

Alan, British born and a lover of everything English, a great fan of Stephen Fry, floored me one night when I walked in on him watching QI to tell me Stephen was an Australian. The shock was visceral but like most carers in the early stages, I argued with him. Arguments became the norm. It suddenly seemed critical to him that he reduce my importance in his life. Our home was owned by him! Again, I argued, once producing the deed to show him we owned it jointly. He screamed that this was a fake and grabbed, threatening to tear it up. He didn’t know what I was doing living in his house! He wished I’d leave! Many days he would scream diatribes against me, even as I looked after him in the most intense and incredible way. “Get out” I don’t need you! There was almost nothing he could do. I could not understand how he couldn’t realise this. I was incapable of facing up to the obvious.

In rehabilitation after surgery, the staff implored me to have him assessed for dementia. To my shock, the diagnosis came as a relief. I suddenly realised it wasn’t that love had dried up. It wasn’t that he really hated me. He had an actual illness, a disease. I set about learning a new way to exist. Creating an environment with some calm in it. How could this happen to someone whose memory had been his main source of work. His diagnosis was in 2014, I nursed him at home until 2016. Although I cared for him above and beyond what many witnesses thought I should, I could no longer say I loved him. I hated myself for this, but it was true. My duty was to look after him and I did so in the most incredible way, but ‘love’ was no longer anything I felt. I often wondered how I could possibly have become mixed up with this this man. The 12 or so years I travelled this devastating road had wiped our good years completely from my mind and heart. I felt such a failure. Something was wrong with me.

When a virus struck him down in 2017 his death was sudden. I was not sad. A volunteer at RM Begg, I did not wish him to travel to the end of the dementia road. Heavily drugged, he rallied on his second last day, looked up at me and said “Irene”. My name was his last word. He had never forgotten who I was. He’d fallen in love with me again, during his days in care. He’d also fallen in love with a senior nurse who he confused with me and acted like a man found cheating when I turned up! (There is often a funny side to things.) I organised a farewell for him, fitting to his status. I delivered a fitting eulogy without breaking down. I entertained a large group of friends at his wake. I sometimes felt full of tears, but they never came out. How do you solve this conundrum - to wish them dead or to want them to live on? During his stay in RM Begg, he never lost his charisma. He could still make an off-the-cuff speech - definitely affected by dementia but constructed in his usual crafted way. The right amount of seriousness and humour. He could still make people laugh with his incredible wit. Recently I discovered some of his earlier writing and the man who I had spent a great part of my life with, reappeared. My breath was taken away by his brilliance. The past came flooding back. The sophisticated, erudite man I had watched on stage, travelled the world with, been so excited to make a tree change and play farmers with, loved our dogs passionately with, came flooding back.

I now miss him and our life as it was. I now feel the love we had. I now understand why I went through hell to make sure he still felt cared for. Being a carer is often a very lonely occupation. You continue to be their carer even when they are in a home. When death finally steals this job from you, you are left with post-traumatic stress. The endless nights and days of waiting for the next drama, the never-ending load on your nerves. The self-recrimination. It all falls in on you. Only those who have travelled this road know the horror of it. Woodend Lifestyle Carers Group is full of such people. There is comfort in being with each other. From the terrible early days, when you aren’t aware of the toll being taken, until the aftermath, when the ability to unravel damaged nerves and topsy turvy emotions can begin to take place among those who know. Not all cases are the same, but this is one story.

The Woodend Lifestyle Carers can be contacted by calling 5420 7132. Although located in Woodend, the group is for the whole of the Macedon Ranges and its neighbours.

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