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.