My mother has Alzheimer, so-called stage 4-5 If I am correct. This means she has almost no memory for facts . In general she is only able to follow a conversation for the length of two sentences and she increasingly has difficulty finding the right words. Last week, she kept on praising the “Blue Rain”, and it took a while before my brother understood she meant the beautiful blue sky.
Writing this, it would seem there is few possibility to have any sense making and meaningful conversation with her. However, the opposite is true.
Yes of course, when I focus on real facts and happenings, reasoning and argumentation, analysis of options, decisions to take, checking the truth quality of her stories, there is no way on earth we could have a satisfying conversation at that level of reality.
And I must confess, when visiting her, coming from “my world” where reality based conversations are leading, I often need time to tune in to her world. The world of images, dreams, stories and above all of sensing and feeling, of connection and how she perceives the connection.
Sometimes our first moments together start in the restaurant of the care centre she lives in. As a matter of fact, these moments are spoiled by the very effective socialisation training my mother must have had during her life. She starts asking me all kind of polite questions: “how are you, how is your daughter, how is your work etc.” and the conversation at “reality level” takes of, leaving me frustrated and blocked within moments. It’s as if a big STOP pops up in my head and blocks whatever story I could share with her.
When I notice this, I literally change space by taking her out of the restaurant, stay quiet and wait for the magic to happen again.
Because Magic is how it feels so often during our encounters. I just have to open my arms, hold her, waiting for the sorrow, the tears, the tension created by her disease to come out and pass by until a more peaceful state enters the room. Just being there, trusting that her pain transforms in whatever comes next and than follow what is needed. I than sense a shift where she gives herself totally to me and allows me to help her with daily but so important things, such as choosing a nice dress, doing her hair…
And she, who never wanted help, is finally open to receive it.
The most beautiful moments happen when we are just the two of us, creating our own little world in a bubble. It’s as if I gradually open all my senses towards her, like being with my kids when they were little, tuning in to where she is. What film is she in right now? Knowing that this film is a blend of past reality and imagination, but that her feelings about the past are more true and transparent than ever. As if finally I get a sense of how life really is and was for her. There is just nothing between us anymore, everything is open.
Sometimes I, or I should say, we start to play. She makes a move, a small remark and I make it bigger, she unfolds further and than…suddenly there is joy and laughter. I have never experienced such joy with her before.
Or she imitates her mother walking in the street, and suddenly my grandmother is there, with us, in all her essence 18 year after her death.
Essence moments, if only they last a minute or less, fuel my day, stay with me for a long time after. Sometimes I even feel grateful that she has Alzheimer, as it took away the “social curtains” between us.
Being with her, the fact whether I am or am not “close to myself”, becomes obvious in the moment. Sometimes I do “guard of”, a little bit like stonewalling. For example by taking care of her little household instead of tuning in. At other moments I need to flee out of the house, phone my husband, cry, get rid of my frustration, before going back again with a more empty and open mind. It is self-awareness about what is happening between us and inside me, that is vital for how our relationship unfolds in the moment. And in this very moment I can decide whether I bring it out to her or whether it is better to ask help from someone else to go through my own grieving or anger. There is no escape. I need to address my own feeling, as she immediately feels the change between us and responds to it in a negative way, blocking our connection. As such I learnt to trust that really being with my feelings of frustration, sorrow, anger always leads to a transformation in other feelings, such as warmth, calmness, peace…, which help me to empty my mind again, and open up for whatever presents itself.
Did my mother’s Alzheimer make me a better person? I don’t know. It probable made me more compassionate for people’s life and humanity.
I still remember feeling very shocked when a visitor of the care centre told me with this particular tone of voice: “there are lots of demented over here….”. Suddenly I understood the whole difference between looking at someone and seeing his disease, as if you are only Dementia and lost being human or looking at someone and being with him. It made me aware of the change that happened in me.
And yes, the memory does not work, but their full being, the completion of their whole life and how they perceived this life, presents itself in her essence to us. If only we are able to see it and connect with it, by taking away our own curtains of thoughts, hopes, expectations…and allow ourselves to feel whatever there is, right there, right now.