Alzheimer’s disease is described as an irreversible, progressive brain disorder that slowly destroys memory and thinking skills and, eventually, the ability to carry out the simplest of tasks.
My uncle had been diagnosed with Alzheimer’s disease four years ago at the age of 70 and his condition has been on a rapid decline since then. His symptoms included severe confusion, severe loss of memory, especially short-term memory, difficulty with speech and difficulty carrying out simple tasks such as using a remote control or telephone. He recently moved to a nursing home, but my aunt missed him too much, so after four weeks there she took him back home and organised extra support.
I just visited my aunt and uncle for the weekend and as I now travel home on the train after spending 48 hours in their company, I feel that what has emerged over the past two days has been profound, deeply humbling and has completely changed my perception of Alzheimer’s.
I have known my uncle for 58 years. Although we lived in different cities much of the time, I saw him every year, sometimes many times in one year, depending on where I was living and what was happening in each of our lives.
Growing up I remember my uncle as a very fit, handsome man who loved his sports cars and fashionable clothes. (He was only 16 years older than me). He and my aunt looked so beautiful and sophisticated, and I always looked up to them in terms of fashion and taste. When their own children were young, I would babysit for them, and my aunt always had lots of lovely food for me and a beautifully prepared warm bedroom on offer if I was staying over. My aunt and uncle were very generous at Christmas and birthdays, always remembering my birthday and choosing presents that I loved.
I also remember feeling that my uncle was always in a rush and therefore spent little time with me – he was very busy running a business and his social calendar was very full – as a result I never felt I really knew him and even whilst on the phone chatting I got a sense he wanted to be off the call as soon as possible. He would always say “yes” and my name, not “hello”, and that wording felt very functional, already seeming to be marking the call as a brief, straight to the point one.
If I was asked what my greatest memory of my uncle was from that time, it was of a man who was always jiggling the car keys in his hands as if he was about to go somewhere. It is only now looking back that I can feel my uncle’s constant motion was his own way of trying to prove himself in the world, whether it was achieving through his work, sport or his relationships.
On this recent visit my uncle did not recognise me and initially was quiet, occasionally joining in the conversation, though the words he used were often unclear and did not relate to what we were talking about. He appeared to be in his ’own world’ most of the time, distanced from us and all that old familiar drive and wanting to get up and go was less evident and hidden beneath a placid facade. However, just under the surface the constant motion remained and what used to be expressed through jiggling his car keys was now expressed through an internal unrest.
Throughout the first night I heard him literally dozens of times get out of bed and wander around the flat. As a result, he was very tired in the morning and dropped off to sleep many times sitting in his chair. We spent a very gentle next day together walking and eating out and also chatting quietly at home and my uncle would drift in and out of sleep when there was a lull in conversation. In the afternoon I offered to massage his legs and feet and as I did so, felt his body settle into a different energy. His body rested deeply in his chair, not collapsed, but being held more gently as he surrendered to the quality of my touch, and his face softened.
That night he slept straight through the whole night until 7am – something my aunt commented he had not done for years.
We sat in the living room that morning chatting and my uncle got up and moved a chair around to form a circle rather than the slight curve that we were in. It was a moment that had a quality of intimacy in it that was so deeply touching and was at complete loggerheads with the quality I had been used to throughout my entire relationship with my uncle. Through that gesture of getting up and rearranging the chair so that we could all be together, he was choosing to come into relationship with me and my aunt and not stay on the periphery, switch off or get up and move away.
He started to speak and at first the words did not make any sense, but then as he gained confidence in the space we offered him and opened up, we could understand he was talking about his business. He shared what he felt he had done well and where he still had concerns (he retired many years ago but still held a sense of worry that he had not been good enough or could have done more). Finding and expressing the exact words was a difficult task for my uncle, but this did not matter because in that moment we could feel he wanted to share intimately with us in a way we had never received before (my aunt expressed she had never in their 55 years together heard him express with such openness). He faltered for a moment and said that he had probably spoken enough, and his head was hurting with all the thoughts spinning around. We got up together and made a pot of tea and after we sat back down my uncle talked about his life growing up in a house that was deeply disharmonious, with much bickering between his parents; again, something as far as we were aware, he had never talked about before. He then expressed that there was so much coming up for him in his head it was too much and he had to stop and rest.
The openness and the intimacy shared by my uncle has left me considering my own views on Alzheimer’s disease. I had presumed that in this progressive condition affecting the brain, deepening my relationship with another would be impossible and that any opportunity to have a meaningful conversation was lost. How wrong I had been.
Words are not always necessary, for there is a felt sense of what is being conveyed before words are expressed and this sense is always available to us if we are willing to be open to receive. I felt an exquisite joy from the connection I thought I would never have with my uncle yet found myself bathing in its tenderness as he shared from a place of fragility, vulnerability and trust.
I have been shown what can happen when someone with Alzheimer’s disease is held with deep love and understanding and given space so that they can feel safe to explore their feelings and express them without fear of being rejected or getting it wrong, or even making sense. Whilst Alzheimer’s disease is typically marked by a decline in connection and function, there is always the opportunity to offer someone the space to express themselves beyond their condition.
By Anonymous
Further Reading:
Opening the doors to intimacy?
Dementia – is it truly a mystery?
Alzheimer’s and dementia: do we have a part to play?
We all have this inbuilt innate sense of our surroundings and what is going on as you say anonymous we do not have to say a word as we can read a movement which can convey to us more than the spoken word.
I found this whole blog so inspiring to read again, reminding me how important it is to share our lives and experiences for others. “I felt an exquisite joy from the connection I thought I would never have with my uncle yet found myself bathing in its tenderness as he shared from a place of fragility, vulnerability and trust.” There is such magic in being engaged with ourselves and others in a true way, connecting to what is there to be expressed and shared, and the power of healing we all can experience when openness, fragility, vulnerability and trust are present.
It is amazing how much people can hide their ways that are anything but natural and when we live with them they stand out like a sour thumb but for those who only spend a short time with them the wool can be pulled over their eyes.
Melinda this is what I have learnt from 15 years of attending and listening to the presentations of Serge Benhayon and Universal Medicine, how important love and care is for ourselves and all other people. That as you say expression is so important because how many of us can express ourselves without worrying about recrimination?I have noticed from my own lived experience that when we are able to express without fear it is like dropping a pebble into water, the ripples go out and set free all the pent up unexpressed feelings that have lain hidden and healing can take place. This blog is another testimony to the power of love, care and expression.
This is deeply moving. My father has dementia but is more present than I ever experienced him growing up. It’s like he’s forgotten all his anger and fear and can now simply enjoy each day content. As I’m writing this I also feel he’s forgotten the pressure he likely felt to be the main provider but feeling like he couldn’t fully satisfy this role.
He’s so open,appreciative and loving. He remembers immediate family and familiar carers. His willingness to be vulnerable is so opposite the man I grew up with, that it’s deeply humbling. I had no idea dementia could be this way.
How we connect to another especially when physically touching them, allows them to open up and deeply repose so that they can bring amazing results to true healing that will be taken into their next life.
gregbarnes888 the words we use can also be deeply healing, What comes through Serge Benhayon as the spoken word is deeply healing for humanity. Words can be used as a deadly weapon that can cut people down for lifetimes or used to heal in the case of Serge Benhayon.
Wow – deeply touching sharing. It pulls away the veil of degeneration and shows us the potential we all have to heal at any moment if we choose – and highlights the super power that living with Love is. We truly can’t fathom the extent of its medicinal effect.
When we rely on speech alone to communicate we are missing out on the rich contribution that ‘shared intimacy’ can bring. Simply holding a deep presence with someone can be as enriching as the deepest conversation.
Our presence can be very healing, it is down to the quality of our energy.
What you are sharing anonymous is deeply moving and to me the change in behaviour of your uncle came with the massage
“I offered to massage his legs and feet and as I did so, felt his body settle into a different energy. His body rested deeply in his chair, not collapsed, but being held more gently as he surrendered to the quality of my touch, and his face softened.”
You felt how your uncle’s body changed into a different energy, how his body rested deeply, So many people live with anxiousness and nervous energy that they do not realise the strain this puts on the body and how exhausting this is. There is also the benefit of the massage in your uncle’s sleep pattern that he could sleep through the night. Is it possible that the massage allowed him to let go of the tension in his body so that it could rest deeply? I wonder if you continued to lovingly massage his legs and feet every time you saw him what effect that would have long term on his overall health?
‘to offer someone the space to express themselves beyond their condition’… this is a stunning quote to round off this tender, insightful and inspiring article and that ‘condition’ could be anything. In this case it is alzheimers but what about being offered the space to express beyond past hurts, lack of self-worth, fear of recrimination, a need to belong and/or social conditioning?
I loved reading this article. As a nurse in aged care and in my studies about dementia, this quality of care is never mentioned despite it being so obvious that everyone responds to deep respect and care. I’ll be using this in my studies! Love is everything…. Thank you so much for sharing your experiences. I love how your uncle slept through the night after the massage. Loving human contact… so telling of how far we have come from meeting each other in a way that has us surrender and be at one.
Bernadetteglass I also caught the change in the uncle after having a massage of
“his legs and feet and as I did so, felt his body settle into a different energy. His body rested deeply in his chair, not collapsed, but being held more gently as he surrendered to the quality of my touch, and his face softened.”
We all crave to be loved truly deeply and if this is felt in our bodies then miracles can and do happen. Currently because of a worldwide pandemic old people are dying on their own in a terrible state of loneliness, this is bound to affect how they reincarnate with an even deeper sense of loss of the love that we all are and deserve. Have we stopped to consider what humanity is setting up for itself in the next generation to come?
That is such an eye opener, thank you. Truly meeting someone, deeply connecting – a simple move and everything changes, all the angles, the whole matrix, the All; in this case demonstrably so, albeit at times imperceptibly to our human eyes and other senses. Alchemy at work and wondrous it is.
I found this blog deeply moving in its expression, understanding and deep love of another person beyond their achievements and good citizenship. The essence of each of us is deeply still and settled when connected not only to their body but to who they are – before all of the ‘extra’s’ we add during the course of our lives. Your deep love and presence offered in such a simple and loving way allowed for your uncle to come back too and let go of some of the impositions placed on him in the course of his life. Thank you for sharing this experience. This is an offering that could be taken much further for each of us – both personally and within the many systems setup to govern life publicly as we know it.
Christine Hogan,I agree with you that we have set up this life or way of living to disconnect to who we are in truth. The extras that you mention that we add during the course of our lives, is the
Constant motion which was the uncle’s way of trying to prove himself in the world, whether it was achieved through his work, sport or his relationships. We place so much pressure on ourselves. Is it any wonder that the strain of this constant pressure has to be released in some way usually through illness and disease as our bodies discard the false energy that has built up over the years from our bodies.
What a deeply touching sharing, thank you.
The love and care we hold others in is so vital, we should never hold it back or hold anyone less no matter what their condition. What a beautiful healing for your Uncle to be able to express – it felt like to me there was a lot coming up for him from his entire life that needed to come out. Our expression is so important for our healing, it can support us gain space within ourselves so we can come to a deeper understanding.