Things my father taught me

I look for the good in any situation – the upside, the silver lining. It's a characteristic I inherited from my father. He has always greeted good news with enthusiasm, bad as an opportunity.

The day before yesterday I hugged him and told him I thought things were difficult for him. I was referring in particular to a long and involved toilet session we'd just had, and in general to his life with dementia.

He hugged me back, kissed me and said, 'Don't feel sorry for me.' He didn't explain why I shouldn’t but his voice held its usual strength and expression.

He has no insight. That’s a good thing. In this instance, anyway.

Another bright side is that I’m better off than a dear friend of mine who is living with a husband who lives with Alzheimer’s. That’s a ménage a trois I don’t fancy. And my friend’s husband can be mean these days. My father too sometimes gets angry, but it’s not often and he usually apologises afterwards.

Another good thing is that we can afford to keep Dad in his own home. My brothers and I are spending our future inheritance on caring for our father. I’m not sure what he’d think of that. I think his previous self wouldn’t have wanted it – he’d have wanted to look after us from beyond the grave. But in his current incarnation this is best for him I think.

This is another thing my father taught me. When my mother was suffering from Alzheimer’s he used to say that Lucy Before wouldn’t have liked this but Lucy Now is a different person with different needs.

So now, though sometimes to be honest I feel like I’m drowning, I still look for the upside of this situation. Mostly, the worst times are caused not by Dad but by some of the people around me: The Difficult Aunt, The Shrieking Carer. Or The Kibitzer, the person with the great ideas for things I can do. Not that they can do, that I can do. Oh, thanks for that – so helpful, so kind.

OK, tantrum over. Back to looking for the good side, the silver lining, the opportunity. When my head is above water, when I’m spending time with my dad, how do I feel?

At those times it’s like I have become a sack of emotions, most of which I can’t identify. There’s love of course, and pity, guilt and sadness, my old friend anger and, tucked away here in the corner what do I find but gratitude, so hidden that I nearly missed it. Gratitude for this opportunity for closeness and devotion and growth.  For our bubble of privilege in a war-afflicted world. For this intensity of feeling that cracks me open the way tree roots crack a concrete path.

We sit at the kitchen table, my father and I and a guest who has called in. Around us the world spins at a fantastic rate, but here at its centre a father tells his daughter and a visitor a story that meanders and turns back on itself and now is about one thing and now about another.

The listeners sit nodding, smiling, agreeing. ‘Yes,’ the guest says, sipping his tea.

The story flows on and on, carrying him back to when he met his wife, to when his own father was alive. There are billabongs of words cut off from all understanding, torrents that only he can follow.

‘Yes,’ his daughter says. ‘I know.’ And she does.

Bearing Gifts

It's just over two years since my mother died and I have thought about her every day since.

In the early days I could remember only how she was when she was in the grip of Alzheimer's Disease. Her helplessness and despair as the mists began to swirl and she knew she would soon cease to be counted as a person who mattered and become instead an object of pity - someone of lesser value. Then that blank stare, the rage in her eyes when she became agitated in the late afternoon. 'Go awaaaay!' she'd scream.

It was so painful and exhausting to watch, relieved only by the joy of witnessing my father's devotion to my mother - his sweetheart of 65 years.

These days I remember other times. She was funny, my mother, with a wide smile that revealed one slightly crooked eye tooth. I remember how excited she was to see me, how she refused to allow me to help her in the kitchen when I visited because I was her honoured guest. It's hard to lose that kind of love and especially hard  to lose it to Alzheimer's.

But my mother's disease also brought with it many gifts, one of which was completely unexpected.

When my book, Alzheimer's: a Love Story, was first published, I dreaded hearing readers' stories. My own experience was so raw I thought it would be too painful for me to hear about other people's. But to my surprise I found that I loved it, and I could see too how much it meant to these strangers to share their stories.

Gradually I realised that it's because these journeys we take as we farewell those we love are so lonely and so difficult but also so rich and rewarding that they change us forever. When we tell each other about our journeys, these readers and I, we recognise our fellowship and we feel less alone.

I mention all this now because I am discussing my experience next Sunday at the Well-Being group in the hall at 2pm at St Mark's Anglican Church, 21 Beatty Street, Reservoir (just off Gilbert Road).

Come along if you're free, and join us for what I know will be a moving and enjoyable afternoon.

Dementia Awareness Week

This week is Dementia Awareness Week, though you'd be forgiven for not knowing. There hasn't been a lot of publicity. Dementia is not a very sexy disease.

To be perfectly honest, for me every week is Dementia Awareness Week. As it is I'm sure for anyone who is caring for someone with the disease, or who has lost someone to it.

According to Alzheimer's Australia, in Australia right now 200,000 people have dementia, with new cases diagnosed every day. When you add in all their family members and close friends that's an awful of of people carrying a tremendous burden. Dementia is an insidious but almost invisible plague that has spread into every neighbourhood in the country and around the globe.

There's an excellent article in the New York Times that describes the disease, its symptoms, causes, tests, treatment, prognosis, possible complications and prevention. It begins:

Dementia is a loss of brain function that occurs with certain diseases. Alzheimer's disease is one form of dementia that gradually gets worse over time. It affects memory, thinking, and behavior.

Memory impairment, as well as problems with language, decision-making ability, judgment, and personality, are necessary features for the diagnosis.

That second paragraph describes exactly the arc of my mother's Alzheimer's Disease.

It was an agonising progression for all of us, though lightened by the way in which my father cared for my mother. His loving devotion enabled her to retain some dignity until the end. Although she forgot everything else she never forgot that he was her beloved husband and she his cherished wife. I describe some of this in an article in the current Notebook magazine.

You can read the whole article, uploaded by my clever daughter M, on my website vivienneulman.com

My book, Alzheimer's: A Love Story, contains a full account of the sorrows this disease brought with it, but also of the joy we as a family managed to find in the situation. Although our experience of Alzheimer's was harrowing, and I'd have given anything for it not to have come along, it did bring with it many blessings. Watching my father care for my mother, growing closer as a family, and being able to give my mother a proper farewell were among these.

My advice to anyone who is embarking on this journey is to contact your local Alzheimer's Association, and my advice to governments is to spend more money on Alzheimer's research. The need is urgent.

To those of you currently caring for a loved one with dementia, I wish you strength and courage. You'll need it.

My heart is with you.