We first noticed my mother’s forgetfulness and early stages of dementia roughly six or seven years ago. I remember my father quietly speaking to me one day, saying that he was really concerned about my mother’s mental decline. He was agitated and clearly worried, which was unusual for him. This particular day he felt like a scared little boy not knowing what was coming next – yet deep down he did know.
My husband and I had four hours travel to visit them so it wasn’t possible for us to be there as often as I would have liked or indeed felt was necessary to care for them. We were both working, as were my three brothers and their wives, who all live much farther away, so my parents were pretty much on their own with regard to close and consistent family support.
They have always been very self-sufficient, have travelled many times within Australia with friends, and often on their own, visiting family from one end of the country to the other. They’d always had many friends and loved their life, never needing our support for anything. When we attempted to discuss the possibility of them preparing for the time when they were unable to care for themselves and the idea of having a plan for supported accommodation they flatly refused to discuss the subject. They were adamant they would be staying in their home. My father always replied, “You can carry me out in a box – I’m not moving!”
However, when Dad’s body started to slow him up, the angina, arthritis and the many facial sun cancers made it difficult for him to continue doing the things he loved like playing golf, fishing, walking on the beach and pottering in his garden, his world changed dramatically. We were able to secure the government home support for them but eventually at age 84 he realised he was no longer able to drive his car. This really upset him! He was beginning to feel the effects of his impaired mobility and the forced isolation, the dependency on others to get to doctors, supermarkets and the numerous other places he needed access to.
My mother during this time was also in decline but hers was a mental illness and as her dementia became more entrenched my father would lose patience with her. At first I thought he was being mean and very hard on her. However, I soon realised that this was due to his anxiousness and fear of losing her and having to live with her decline, while watching her lose her sense of who she was. He didn’t want her to leave him and he was devastated.
In the early stages of the dementia, Mum would be lost in her mind when we’d arrive for the weekend, not herself at all, but after an hour or so of our arrival she’d be back and would be engaged with us all weekend. But each visit it would take longer to bring her back and eventually she stopped coming back at all and stayed in the lost part of her mind. She confided in me how scared she was and that she’d wake in the night and not know where she was and be really frightened even though Dad was there beside her. Anxiety and depression often accompany dementia and I also noted Dad’s anxiousness increase as Mum started staying in bed most days because she was so scared and depressed. She was never one to spend time in bed if she was ill.
This was a very challenging and lonely time for my father and in my dream one night he told me he was leaving Mum, he said he couldn’t go where she was going. It wasn’t long after I had the dream that he passed over. He’d been my mother’s carer for about four years so when he died we had no other option but to place her in nursing home care.
It was about the hardest thing I’ve ever had to do. Mum was adamant she could look after herself and pleaded with me to leave her in her home but of course she wasn’t able to cope on her own. We looked at the options of having someone live with her, also the possibility of her living with family however she needed full time care and we didn’t have the time or skills to offer that so the day came when I had to take her from her home for the last time and leave her in a place where she knew no one. Within two weeks she had lost her life partner, her home and cherished belongings, the artwork she’d created, everything that was familiar. Everything gone!
I found this really tough, and more so because for the first six months I still lived four hours away so I was only able to see her fortnightly. Eventually we were able to place her in a country facility near my brother and where she’d lived for much of her adult life, however this didn’t alter her state of mind or sense of abandonment.
On the one hand we felt truly blessed, the nursing home was beautiful. They were gorgeous people who gave her the best of care, but her loneliness was immense and she was inconsolable. She was now 84 years old and this change of circumstance was more than she could cope with. Her depression deepened, as did her dementia as she withdrew further within.
When she first went into care I talked to her about having a purpose in life and finding ways she might feel useful, people she might feel ok about opening up with, and if there were others feeling the same as her was it possible that they could support each other?
She started sitting each day with a very old lady who didn’t talk but just lay still in her bed. Mum would sit quietly with her for hours just holding her hand, sometimes she’d talk but mostly she’d say nothing, she simply sat with her. Spending time with this gorgeous old woman, who was always pleased to see her, gave Mum a purpose for her day so she felt better and the depression and loneliness lifted a lot. Within roughly eight weeks, the old lady had died and Mum drifted back into her sadness again and her depression and loneliness came back and she’s not ventured into reaching out to others in that way again.
For me, a most distressing aspect of all this was that Mum lost her ability to make decisions for herself. She felt powerless to do what she wanted for herself.
What I have come to realise is that it is so important for us to prepare for this letting go and passing over stage of life by making our own plans while our physical and mental health is such that we are capable of clearly deciding how we’d like to live during this phase of our life. If we don’t, we place this heavy responsibility on the shoulders of others who are then forced to make those decisions for us and even with their best intentions, they may not choose a situation that we are comfortable with.
In our society it appears that getting old is often seen as something to be ignored, feared and avoided for as long as we can by living in denial of the inevitable.
With the escalating numbers of dementia in our society, and its accompanying conditions of anxiety, loneliness and depression, it seems that many are not experiencing the quality of relationships that we would dearly love to enjoy in our elder years. Dementia can be a frightening experience, particularly in its early stages, for those with the illness, and also for their family who often feel helpless and powerless to stop the decline. I found it really hard to watch my mother lose her grip on reality and to witness my father’s vulnerability during what was clearly a heartbreaking realisation for him. This disease affects everyone around us, it affects all our family and friends. It not only separates us from our self – it affects all our relationships.
Would it be wiser and more supportive for us all to understand that as we age, we are preparing for our passing over, and the importance of deepening our connection to who we really are, thereby avoiding the loneliness? By staying committed to living purposefully until our last breath, our elder years can be productive in our community. Not only will we be enriched by our own self-love and self-care and the love and support of our family and friends, we will also be enriching others around us, and our community.
Lynne P., Australia
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