I’ve not written for a while. I’ve been unsure if it’s really ‘me’ to be writing about my thoughts and feelings so publicly. I am someone who is fairly private (to the point of being seem as aloof I think sometimes by people who don’t know me well). The act of writing about my life and family feels exposing. A few things have prompted me to have another go. Firstly, continued discussions with my Mum, feeling as confident as I can that Dad would approve and that he would hope there might be learning from his horrible situation. Secondly, a colleague who Tweets and Blogs about her emotions and life (@MixedupMindful) asked if I had written recently, I admire her honesty and courage in writing. She could appreciate the ‘exposure’ concerns but felt that others may benefit from my experience. Thirdly, I’ve just walked the dog and it really is the most beautiful day, my favourite time of the year – I feel like for me this is New Year, as the leaves are bursting open, the birds are singing and the butterflies are fluttering. The sight of an orange wing tipped butterfly was the final inspiration!
It’s been an emotional Easter. We spent a few days at Mum and Dad’s house and with the weather being so beautiful we spent lots of time in their garden. I feel the loss of Dad so much more outside as I guess it is where he was literally ‘in his element’.
Me and Mum visited Dad in the care home. He was coming out of another woman’s room with her drink and toast, she did not seem upset! I was struck by how frail and stooped he looked, perhaps it’s a while since I have seen him walking. We walked to his bedroom – which is desolate and depressing. We had every intention of making Dad’s room his own space, reflecting him as a person, but for whatever reason he removes items, pictures, furniture … one of the care staff told us how Dad had moved a bookcase down the corridor on his own and it took two members of staff to be able to return it as it was so heavy. It seems that personal possessions have no interest for Dad and so his room is just a place he sleeps in (when he sleeps) and not a place he feels at home in. I am reassured that staff see Dad’s moving things and dismantling things – largely as how he likes to keep busy. They describe how they ‘relocate’ things later in the day and how they understand it upsets him to try and remove items from him whilst he is in busy mode. I helped Dad to have a drink and eat a cake, it is a way of keeping a connection with him on days where he is less communicative. We had the odd chuckle together and at times he chattered, we do our best to understand the essence of what he’s trying to tell us and try and respond with the correct tone, intonation and words. Sometimes we get it right and he becomes more animated and seems reassured, sometimes we don’t and it seems to add to his concern. I had a flash in my mind of Dad as he was a few years ago and tears welled up, I managed to get a grip and put the image out my head. I’ve become more adept at this, before I would have sat there with tears streaming down my face and Dad would have looked amused, or concerned or oblivious. Clearly this man is still Dad and I can generally achieve some kind of connection, no matter how small, but on another level this feels a far cry from the person I knew from home. Sometimes I feel the stark difference more severely than other times. I think I’ve developed a way of disconnecting this Dad in the care home from the Dad from past years. I think it’s the only way of not feeling devastated all the time, perhaps it’s part of my grieving process.
Back at my Mum and Dad’s house I sat down the garden in a space that was my Dad’s favourite. The fritillaries (flowering bulbs) he had planted were blooming, it was like an insect airport and butterflies were everywhere, all looking pristine, presumably having just emerged from their chrysalises. He would have loved this day in the garden with family around but with space to also be with his nature. I had an urge to drive back to the care home and fetch him, we have spoken as a family about this, we decide against it for a whole variety of well thought out reasons. A beautiful orange wing tipped butterfly fluttered past and I appreciated the connection it provided.
“Will Granddad forget who me and Finn (the dog) are?” A question my son, aged about 14 at the time, asked me about Dad not long after he received his diagnosis. “I hope not” I answered “but if he does he will always know you in his heart.”
It’s been a few years now since it became clear Dad was becoming uncertain of who I was. Me and my son were staying with Mum and Dad. Dad had been uptight and went to bed earlier than us, I nipped upstairs and called into his room “I’m just nipping to the bathroom Dad.” My mum came downstairs a while later and said “Your Dad has just asked ‘Who is that woman calling me Dad?’ .” We all cried – I suppose I had doubts for some time that he always recognised me but this incident felt a very harsh confirmation. My son was devastated, he was old enough to understand if Dad did not recognise me as his daughter then he would not recognise his Grandson, it didn’t need to be said and who knows what he made of the dog?
And yet over time I have just had to adapt to this new reality. Another occasion proved a turning point for me and my communication with Dad. I was visiting him in the residential home he now lives in. I was telling him all about my recent holiday at the coast. “Dad we’ve just been away to the coast” … Frown… “You know the beach we walked on the sand, paddled in the sea” … Frown… I thought he was trying to recall the coast so turned up the description “We watched the gannets, you know those sea birds with the big wingspans, diving into the sea for the fish.”
Frown… then he said quizzically “Dad?” I had to laugh once I had worked out our miscommunication. He must have been becoming more and more irritated with my increasing descriptions of all things coastal, when he was clearly trying to work out who this over-talkative middle aged woman was calling him Dad. “Yes Dad, I’m Jane your daughter, the daughter you had with Eileen your wife.” No recognition, just puzzled amusement … “Oh dear” I said “Have a just invented you a family you didn’t know you had?” “Yes!” he chuckled but I felt the unease and discomfort as if he were trying so very hard to make sense of the situation. It was from then I have called him by his Christian name most of the time. It is a name he is familiar and comfortable with. It feels slightly odd for me but I feel it does not confront his reality so harshly. I’m not sure if it’s the ‘right’ thing to do but I think it’s ‘right’ for Dad, it may change in the future but that’s where we’re at in the present.
It’s hard for me to accept that Dad no longer recognises me as Jane his daughter but we still have a connection. I know he likes me, I think he finds me amusing quite often, I’m certain he feels safe when I’m around – I think he knows me in his heart. All of these things feel more important than presenting Dad with a term he finds bewildering and unsettling.
My Dad has a deep love of nature, always has I think. My childhood memories include birdwatching walks around local reservoirs, throwing small pieces of soil in the air at dusk to watch the bats dive for them, having a ‘pet’ elephant hawk moth caterpillar, feeding it on bay leaf willow herb until it pupated and then watching it emerge as a moth before setting it free. Photos of me as a child in our garden often involved me standing next to a prized pot of lilies or carnations grown from seed. Nature and the outdoors is deeply embedded in my Dad and I think that has passed on to me. I think Mother Nature is probably central to my own spirituality.
Dad is a quiet man, who likes solitude and quietness. He’s sociable but on his own terms and does not suffer fools gladly. I think some people may have found my Dad aloof and maybe sometimes rude, I don’t think that worried him too much. I have fond memories of my Dad as a child but think his role as a Granddad to my son was where he excelled completely. For some years he literally was my son’s best playmate. We have photos of him prised into a small pop up tent, wearing a Santa hat building jigsaws and Lego, playing in the garden with a huge inflatable football that dwarfed my son.
My Dad worked as a machine mechanic in a hosiery factory all his working life. I wonder how he survived in a factory environment, he would have been better suited as a park ranger or a gardener. He provided well for my Mum and me. He did his National Service in the Army Catering Corps serving in Germany, he cooked omelettes for thousands of men and chocolate eclairs for the officers. Dad enjoyed sport – playing football and cricket in his youth, a spell of race walking and then graduating to flat green bowls. People liked playing bowls with my Dad, he was calm and encouraging.
Mum and Dad were a double act and had many shared interests. They complimented one another well, Mum more sociable and outwardly appearing more confident. Dad more calm, thoughtful and cautious, capable around the home with DIY, gardening and finances. Both were hospitable hosts and were a stable base for me through the inevitable ups and downs of growing up.
Dad enjoyed his red wine and settled in an evening most often preferring his headphones on with the radio, rather than the TV. He loved listening to Leicester City football commentary on Radio Leicester. If it had been an eventful game we would chat about it on the phone.
In a Blog about my Dad it seems important to offer a pen portrait of him in order to read future posts within the context of his life. A central theme to my work as a researcher and practitioner in dementia care focuses on the importance of life story work (see associated resources on my website). It is a theme that I’m sure will be a critical thread running through these posts.
This is the beginning of a Blog about my Dad.
My Dad is a very gentle and wise man who has taught me more than he will ever know and this Blog is a way of sharing his lessons further afield.
For the past 6 years Dad has been living with a diagnosis of dementia although has been living with dementia for far longer. This Blog is a place for me to record my thoughts, feelings and experiences of our shared lives. The postings will not be a chronological sequence of events – or even logical! I hope over time they will evolve in to some sort of coherent account – we’ll see.
The overall aim of this Blog is to honour my Dad and the contribution he has made to me as a person and to my understandings of dementia. Although personal it will be censored to some degree so as to maintain my Dad’s dignity and maintain some privacy in our shared lives. The decision to write about my Dad was not taken lightly and was discussed with my Mum, family and friends. I hope and think that Dad would approve. He lessons are too precious to not be shared.