Down The Rabbit Hole

I’ve been telling you some of our dementia stories – Lena’s and mine. But you only ever hear one voice. Mine. The caregiver’s. Not the person who actually has dementia. Sadly, Lena lost her fluency of expression a long time back. That’s not to say she doesn’t have feelings and emotions – I see them in every movement of her face, every gesture. It’s just that she can’t arrange the words any more. So what’s going on inside her head? Fortunately not everyone’s affected in the same way as Lena, and there are some who, despite the illness, are extraordinary story-tellers. Let me introduce you to one of them.
Free Fall by Minna Packer
Free Fall - a drawing by Minna Packer - from her website, Suddenly Mad.

Minna Packer

Minna has been an educator, filmmaker, producer/director, fine artist and writer. Born in 1954 in New York City, she is a first generation American, born to Jewish Holocaust survivors from Eastern Europe. She was diagnosed with Early-Onset Alzheimer’s in 2017 and logs the innermost thoughts and experiences of her new world at Suddenly Mad.

Here’s how she begins a recent post, Free Fall:-

The way that I have been living is in a kind of free fall. I don’t have much memory of the order of my days. I’m reliant on my iPhone calendar and a list I write every night very late before bed for the next day. This free fall is a process. A disordered order. While I really have no control over how I progress in Alzheimer’s, by writing about it, and drawing and taking photographs, it keeps me from falling too fast. It a kind of stop motion film of this life I have now, and a container of my feelings about it. Snapshots of it as I fall down the rabbit hole of this disease. I want you to know what I notice. I invite you to share in this strange journey with me.

Later in the post, we get to meet the people in Minna’s drawing. One of them is her husband …

I see the sadness in his eyes. I know that he cannot understand the insidious nature of losing me while I am still here. He sees me suffer and he suffers too. He is my caregiver now.  He is here with me in my time of need, making sure I have a home and food and care. Things are not going to get better. My attachment to him now is childlike. Alzheimer’s is making me more childlike and dependent. I was always independent and then this happened. Our love needs to be a love with letting go. I’m the one in a free fall. No net can catch me. But he is here holding on to me. This is the paradoxical push pull of this disease.

Minna’s not looking for our sympathy. She wants empathy – for us to be able to see the world through her eyes, to feel it as she feels it. She desperately wants to continue connecting. If she’s connected with you, I urge you to tell her that on her site, Suddenly Mad, by leaving a comment or signing up to her newsletter. 

We need to listen to her too. In another post, Minna looks ahead. She dreads the thought that some day she might be placed in residential care: 


Don’t warehouse us with untrained workers who are overwhelmed with caring for dozens of dementia patients. Find another way.

Find another way. That’s exactly what we want to do at The Care Combine, delaying or even preventing the move to residential care for those with dementia. But is The Bine the solution that Minna is looking for? What else will she suggest?

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