Presence, Part 1. Finding presence in Mum’s dementia.

Four months ago, I moved my seventy two year old Mother into dementia care. Moving Diana out of her beloved home and into institutionalised care was challenging to say the least. In spite of liking the place – especially the nurse in charge of the dementia unit and Shadow the chocolate labrador who spends much of each day at reception – there was no way I could be certain I was doing the right thing. And in the weeks and days leading up to the move, I found myself increasingly anxious. This wasn’t helped by well intentioned family members venting at other family members about how I was doing the wrong thing, and saying that I was acting entirely in my self interest.

For the last several years, Mum has had 24/7 day care at home. When I brought her home from Ashburn Clinic, with a diagnosis of short term memory loss caused by alcohol dependance, she couldn’t drive and wasn’t safe to live by herself. Initially, I found her a full-time live in companion who had regular breaks. However as the memory loss edged its way into alcohol induced dementia, the role became too much for one person and two women shared the role, then three, then four, then five. Each of them looking after Mum for a week at a time, on a roster of care I managed.

I’ve been blessed by the women who have taken such good care of Mum, whenever there has been a gap, somehow through word of mouth, I’ve found women who I have liked and women who have grown to love Mum. Which is why I decided to have one of them with us during that first week Mum was in her ‘new home’  – not just to help Mum integrate but for me too. I needed someone I trusted to help make the transition easier.

After considerable thought, I’d decided against explaining to Mum exactly what was happening as it would only have made her highly anxious. And so the carer and I took Mum up on the last day of March, simply telling her that there were a few things we needed to fix around the house and that we were checking her into somewhere like a hotel for a little while. She has always loved staying in hotels. Lovely people, good food, music, a dog and a cat. As we walked through reception and walked down to the dementia unit, she graciously enjoyed a round of introductions. We settled into her room and I made my way back to the office, to tackle the predictable pile of paper work.

In all honesty, getting her there was all I could manage that day. As confident as I felt about the place – I’d spoken with people who had family in residence and heard them speak highly of the facility and its staff – it was still heartbreaking. So I retreated back to the family home for cups of tea and dark chocolate and hugs from Adam.

As the day went by, there was no word from the carer and I became increasingly apprehensive, although I didn’t want to presume the worst.  However she eventually reappeared after dinner and I went out to greet her in the driveway – only to  be met with tears and ‘I can’t talk to you right now’. She calmed down a little after eating (apparently the food there was so bad she couldn’t eat) but then went on to tell me what a dreadful place the dementia unit was and how I’d made the wrong decision. No-one had checked in on them during the day. Everyone was more demented. Mum was not safe.

I curled up in bed that night wondering what on earth I’d done. Wracking my brain, I tried to figure out how I could have got it so wrong and seriously contemplated the very real possibility that I would need to bring her home and start from scratch.

Wide awake in the dark quiet of the very early morning, more than anything I wanted not to be the only one who could make this decision. The feeling was so utterly visceral I wanted to leave my body and run away from the lone responsibility. At the same time, in equal measure, I wanted to have someone, a parent I guess, tuck me in under the blankets and say ‘Don’t worry, I’ll do this. I’ll make this decision.’ But I couldn’t. And there wasn’t. There was only me.

There was only me.

And in that moment of realising the only person who could do this was me, the only person who could keep me safe in the middle of this feeling of all consuming lack of safety was me, the only way through this was to be right in the middle of it, in the here and now without reflecting on the past or frantically thinking through a hundred different future scenarios, I found presence.

Or maybe it found me. It was still and silent, expansive and timeless.

I wish I could say this sensation of being utterly in the present stayed with me, but its nature seems inherently elusive.  I definitely a have better idea of how to find it and somedays, I find myself passing through it unexpectedly or it gently creeps up on me. And while my intention is to deepen those practices that cultivate presence, at the moment, I find both peace and comfort in simply knowing it exists.

Next up…Presence, Part 2. How Mum found presence in her own dementia.

4 thoughts on “Presence, Part 1. Finding presence in Mum’s dementia.

  1. Hella! Thank you so much for taking the time to comment. We would so love to see you in Spring! I will email and let’s plan something. Much love, Tink xx

  2. Lovely to read this story of your journey Tink, about trusting your inner guidance and staying in the present!

    Four month already, looking forward to a sunny Spring day in Pekapeka!
    Listened to music of “The Priests” the other day and memories came flooding back!
    Much love
    Hella xx

  3. Well done Tink, it takes a lot of courage to look deeply into your fears, to find a solution for the right care for your Mum, amidst criticism and self doubts. You have come through strongly, and you did it yourself xx Di, Mum, is safe, healthy and happy, you have not relinquished responsibilities, but given Di a new stage in her life, where she can truly be herself, within a caring environment. Big love xxxn

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