Let it be…

Yesterday I wrote about my friend who has cancer and has been given a few month to live. We often spoke about how people worry about the future, fuss about things and get themselves all tangled up in stress. Her words are always “so this is what we do on a Tuesday at 14h00”. There is nothing more or nothing less than this moment, and to be in it fully.
So many times when we are together I would be brought back through this powerful reminder, this is it. The now. The here. This moment of being together. We can get completely lost and distracted by the “what if’s”. I am sure that the thoughts if more chemo or fluid on her lungs must be terrifying and could send her into complete panic. Yet, we share this perfect moment of sitting in a restaurant, feeling good NOW in each other’s company, enjoying a meal and (too much?) wine.
Another lesson was that “why don’tya” one. We are so often quick to jump into advice mode – “why don’tya try this or that?”. My friend always stopped me in my tracks, making me aware of easily I start giving (unasked for) advice…
I am privileged to be able to share this here. Please don’t sympathize or feel sorry for me, I am the fortunate one here! As for my friend, she would hate to have people feel sorry for her. This is how it is a Thursday morning at 08h51. For me, I am learning to think about my own mortality. I walk the labyrinth each morning in gratitude – I am 54 with both parents alive, I have a wonderful relationship with them, I am blessed to live in beautiful Hout Bay, I am blessed to be studying and surrounded by friends, I have found the batteries for an old watch which now works again, the sun is out. This life, this moment, our connections, my knowing that everyone is Divinely Connected, makes me eternally grateful.
Today is the 93rd birthday of another dear friend – yesterday we celebrated with her. She was beaming with love and light surrounded by old friends. Life is so incredible precious. Life it. Don’t feel sorry for me, I am so happy to be on this path with friends who teach me about Life.
Rayne Stroebel MSc (Dementia Studies)
+27 82 455 5300 Rayne.Stroebel@mindsmatter.co.za www.mindsmatter.co.za

Towards the end

My dear friend has been given about fourteen months to live by the oncologists. It is absurd. As we have drinks in Noordhoek overlooking the beach, it is hard to believe that this beautiful woman, so full of life, always ready to share her wicked sense of humour and make us laugh is dying. Yes yes, I know we are all dying, but not all of us have a date. She has a date. I feel so immensely sad and frustrated and helpless. Why the hell can the not cure this cancer? How will it progress?
We have always shared a passion for aged care. We have had so many conversations around death and dying, caring for people living with dementia, assisted living, etc. She has challenged me to think deeper and deeper, and to question the many preconceived ideas that I have. And now she shares a new insight. A week ago, she was in such a bad way that she thought it was the end. She was at home in bed, feeling, well feeling like death. Looking around her home, seeing a shirt that she was supposed to put in the cupboard and did not, she became aware of her attachment to the things around her. The things that tell her story, that define her world, that give her comfort. The things that represent this life here.
Her and I have so often talked about a dignified death (of other, old people in the Care Home). Suddenly, thinking that her own death is imminent, she realized that she did not want to die at home. That there are too many things that she feels an attachment to, that she does not want to leave. Things that saddens her to have to say goodbye to. And contrary to all our conversations over the years, she realized that she would rather die in hospital, where others will take control of the process of dying. That in hospital she can let go, that she does not have to be in control, that she will not have to make decisions. Or feel that she still has to put away that shirt…
I have spent so many years thinking that I know what ageing is about, talking about death and illness, of quality of life and meaningful engagement. I have talked myself into believing that I am some sort of expert in my field. Sitting there listening to my friend, I suddenly know that I know nothing! I had read thousands of books and research articles; I have made it my business to study ageing and dementia. And yet, speaking to my friend I am (again) realizing that there is no gold standard, no one recipe or pathway, no standard procedures. Unless you are in that situation – albeit the process of dying, of living with dementia, of feeling the loss of function or the aches and pains of an old, tired body – you cannot possibly begin to know what it is like.
We need to stop and listen to the voices of the true experts, those who are at the coal face. Sit still long enough to truly hear their stories. Then, and only then, will we begin to honour and respect and understand person centered care, asking the question “how do you wish to be?” Then, and only then, will we be open enough to really BE there for someone who is in need of our support. If we can stop, listen, hear, and then be willing to act accordingly.
I begged my friend a few weeks ago to make an advanced directive, in which she must leave instructions to not take her to hospital when the end is in sight. We spoke about this at length. I now know that that was wat I wanted. I do not want to see her die in a cold and clinical hospital, surrounded by medical personnel who do not know her. I wanted to be with her at home, surrounded by the things that tell her story. I now know that those things might at the end of the day not be important to her, and that it might be easier to detach and let go in a clinical setting where people are not emotionally distraught at her dying.
This was so difficult for me to hear. But I am so glad and feel so honoured that she shared this with me. I respect her so much, and of course I will respect this wish. I drove home over Chapman’s Peak blinded by tears. My friend, my mentor, the one who never thought twice to challenge me, to tell me off, to put me in my place. I cannot imagine her not being in my life. And then again, I realise that this is about me. I now want to learn how to truly be a friend who will be there for her.
Rayne Stroebel MSc (Dementia Studies)
+27 82 455 5300 Rayne.Stroebel@mindsmatter.co.za www.mindsmatter.co.za

Denialism

At the recent Australian Association of Gerontology conference in Sydney an anthropologist accused me of being a “dementia denialist” because I question the transference of western disease models onto non-western people. Considering that most of the research on dementia is done in northern hemisphere countries on white older men, I think it is justified to question if the same gold standard applies to people across the globe. He was angry, accusing me of being like Thabo Mbeki who denied the HIV/Aids pandemic. I was really surprised, yet noticed that he did not want to listen…
My question – it is not a theory yet, just a question – is based on the premise that we are a lot more than our bodily functions, in this case our brain (dis)function. We are ecobiopsychosociospiritual beings. We are influenced and determined by so much more than neurological pathways. This reductionist, biomedical focus has resulted in so much harm through the stripping of our humanness through institutionalisation and medicating the life out of people who mostly need to be integrated and not segregated. The only denialism that I see is the insistence of most of the medical fraternity to deny that there is more to us than just our brain function. The denial of that mystical presence that Desmond Tutu calls “the sacredness of the human Spirit”.
Sitting through presentation after workshop at the AAG conference, I was struck by the constant reference to “quality of life”, and how this equates to being “happy”. Yes, we all are in search of the good life, since the time of Plato. One workshop advocated for a model to engage the community in preventing loneliness. An example was given of an older person who lives alone, is busy the entire day, but is alone after six in the evening. The team was instructed to find ways to “help” – maybe dinner with friends, a lift club to take him bowling, getting youngsters to visit him, movie nights etc etc. It is all good and well, but I do get the feeling that we have become obsessed with DOING, feeling guilty and that we have failed older people when we “allow” them to just BE.
As we get older, I do believe that we need to reflect, that we need to do less and enter the mystical world of our own Selves. We progress, we grow towards silent contemplation, finding our inner voice. I can think of nothing worse than constantly being dragged OUT of that place of silent contemplation, meditation or prayer, inner dialogue of Being. Yes, loneliness can be hard. Yet, have we demonised loneliness to the point where people feel a failure if they give in to it? Like “successful ageing” – if you do not look like Jane Fonda at 80 and can jump around like Tina Turner you are a failure, failed at this thing called Life… What is the message that we are promoting – is it defying or affirming?
People living with dementia, and in fact most older people, will progress in life towards a state of being less active. This does not have to be a curse. Why are we so afraid of this slowing down and turning inward? Is it perhaps because we have simply not built enough resources to sustain us in our old age? We cannot be forever young. There is no reason to run marathons at 80, for goodness sake! Well done to those who can and want to do it! It is ok to sit, do nothing, to BE. Yes we will get grey and have wrinkles and a weaker bladder, forget names and get confused at the airport. I look at a photograph of myself taken on Friday evening on the beach – I am now 54, grey, I look thin and rake-like, my shoulders are drooping and my ass sagging. That is my 54. I love it.
We must actively resist the “gold standard” of how people should be. Not everyone can be, nor should be, athletes and rock stars in their ageing. Whilst ageing certainly is not all about decline, our focus on youth and beauty make older people like failures. There is so much to embrace and celebrate about ageing. Top of my list is to not give a shit! It is a wonderful gift that comes with being older. To not feel that I have to impress people, that I have to live up to others’ standards, that I do not have to prove myself to anyone. The gift of enjoying my own company, of not wanting to go out and conquer the world. To be left alone to my own thoughts, my own company.
We must stop this crazy notion that all old people must be happy and laughing and playing with kids and enjoy bingo and laugh at the clowns and horticultural therapy and music therapy and pet therapy. If anything, THAT will drive me crazy! Do not put me in a place where there are fake doors or pretend pubs or murals that look like a forest. Do not put me in a place where I am forces to participate in silly games or listen to Vera Lynn or where kids come to sing to me. I will be that horrid old man shouting at them. Not because I am a horrible old man, but because I do not want to be patronised. Let me be. Respect my silence, respect my forgetfulness and my sadness. This is how it is now, it is not your job to make me “happy” and try to drag me out of my state of being.
And you know what, try to see ME. I had my time of being young and frivolous, I did all the things I wanted to do. Now I want to be alone perhaps? Try and just be here, there is no need to talk or play or sing songs or play bingo. Maybe I am tired, it has been a long life. Maybe I am sad, that is fine too. If you really respect me, and feel that you have to “help” me, let me be. Don’t make me feel as if I have failed the test of ageing. This is how I do it. There is more to me than remembering your name.
Rayne Stroebel MSc (Dementia Studies)
+27 82 455 5300 Rayne.Stroebel@mindsmatter.co.za www.mindsmatter.co.za

Solitary confinement

What happens to people in solitary confinement? I listened to this TED talk on my way to meet a friend this morning. According to the presenter, there are tens of thousands of people in solitary confinement in the USA. Some have been locked up in a 2mx2m cell for more than 30 years, with no windows, being allowed out into a wire cage for one hour a day. Food is shoved through a gap in the door. One man befriended a wasp – fed it, chatted to it. All in an effort to not go insane.
In Australia, a good friend is trying to do research on older people living with cognitive impairment in Australian prisons. She has been trying to gain access to a prison in Sydney for the pst seven months – with no success.
So you know where this is going… At the conference in Vienna there was a presentation by a PhD student “Understanding self and age in the carceral setting”. It is not a pretty picture. Our sense of Self is formed and defined by our interaction with others. When we are positioned as “prisoner” we automatically lose the free ability to construct a healthy sense of self. Taking away our negotiation ability, our reciprocal engagement to form a sense of Self is a prison sentence in itself. The TED talk elaborates how people in prison eventually start losing their sight as they never focus on a far horizon. They lose their sense of being-in-the-world, and would begin cutting themselves or smearing faeces over themselves in a desperate attempt to actually place themselves in the world as a living human Being.
For anyone working in long term care, this will be familiar. There is jot a nurse working in Aged Care who have not seen this happening – older people who start scratching themselves until it bleeds, smearing faeces all over themselves. Even a negative stimulant is a validation of being alive. The smell of faeces, the pain of skin scratched until it bleeds means “I am still here”. Naomi Feil, the founder of Validation Therapy, talks about older people who become “living dead people”.
We have to bear witness. It is time to question the practice of long term (so called) care and its infringement on the basic human rights of older people. No person, regardless of their age, their crime or their cognitive ability, deserves to be locked up in solitary confinement or a frail care bed with cot sides, their only human contact being fed or cleaned. When we kill the soul of another human being through depriving them of validation, of a purpose (other than being a passive recipient of “care”), we are indeed guilty of a heinous crime. Older people deserve to be part of a community, and intergenerational society where they are revered and honoured.
We have to bear witness, but more than that we have to become activists to stand up against ageism and institutionalisation. We must create a new way of Being, so help me God, for if I am to be put in a “frail care” one day all hell will break lose. Be warned.
Rayne Stroebel MSc (Dementia Studies)
+27 82 455 5300 Rayne.Stroebel@mindsmatter.co.za www.mindsmatter.co.za