Six years ago, I took on the role of carer to my Father, who was, at the time, only 67 years old. My role as a carer has developed alongside the highs and lows of supporting someone with Dementia. Being a carer requires patience, understanding, compassion, humor (definitely lots of this!), and the ability to change plans and ideas at the drop of the hat. It can be frustrating, heartbreaking, amazing, and eye opening, all mixed into one. I have learned to live in the moment and to appreciate every happy moment I now have with my Dad!
So, let’s begin….
The first thing we noticed that was different about dad was mainly that he was forgetting what to buy in the shop. He would go out for milk and come home with a rifle magazine; we always put it down to dad being a chatterbox and getting carried away. Then Dad started to get lost in the local area and would plate up raw food for us to eat, which was upsetting as Dad was an amazing cook.
Dad had moved into his own flat within a lovely, sheltered accommodation with a full-time warden. We thought the independence and space would allow him to structure his own routine. We felt hopeful for positive change.
However, the huge change of layout, type of property, and having “strangers” living at close quarters, had absolutely put dad in a sort of crisis. Food was left all over the place, he would often go out “shopping” with barely any clothes on in winter and get brought back to his flat by strangers. He had arguments with nearly all the residents, forgot to take medication, flooded his bathroom several times, set fire to a kettle and took his frustration out on us. The list was endless!
As we didn’t understand Dementia, we got frustrated too, and this caused unintentional hurt on both sides. Both did not trust one another, and there weren’t many happy memories at this point. I’ll admit, I was exhausted, frustrated, angry at the world, and felt very let down by services for not listening to us when we raised our concerns. I felt like my role as a daughter had disappeared and I was now a cleaner, a cook, and a carer.
The Crisis Point… nothing that a cuppa and cake can’t solve
Dad was eventually sectioned; due to his aggressive behaviour and a diagnosis of Frontal Temporal Lobe and Vascular Dementia. When people hear how I felt when my Dad was sectioned, they look at me like I am crazy; I felt elated, relieved and listened to.
Leading up to Dad’s sectioning, I discussed with the police and ambulance crew whether my presence at this testing time was appropriate; as I imagined that Dad would be dragged out kicking and screaming – exactly how films and tv programs portray it.
I can tell you that I watched from my car, and Dad was treated with respect and kindness. The police had explained to him that he needed to go to hospital to be checked over. They gathered some snacks for the journey and wrapped a blanket around him so that he was comfortable in the ambulance.
I visited my Dad a day later in the unit where he would be assessed for two weeks. I will always remember that he was sitting in the day room, watching Judge Rinder, sipping orange squash. I had imagined that the unit would be full of people displaying odd behaviours; however, the unit was a calm place with activities to get involved with and the staff were absolutely fantastic. Dad received his diagnosis at this unit and was put on medication due to his aggressive behaviour. The difference in him when we visited was amazing, he was calm, kind, and rather funny. We, as a family, finally had the answers that we needed, resulting in the support that Dad needed to get back to a good place in his life.
Once Dad received his diagnosis, we started to review previous incidents, and noticed more and more differences with the way he presented; whereas, before the diagnosis we would simply make excuses for him – almost to protect him, as if we couldn’t admit it?
Around this time, I undertook some Dementia training. Wow! The course was absolutely eye opening. Because of our actions and negative behaviors (looking miserable, short tempered and getting upset), Dad would remember this (not the reason as to what was causing this reaction). I, then, had to change my approach completely. If Dad had got frustrated, I had to learn to not take it to heart, and to laugh it off. Cups of tea can seriously solve world problems!! So can cookies!
Since learning the basics of Dementia, my relationship with my dad has skyrocketed. I have learned to trust staff to get on with the job of caring for my father, to allow my dad space as I tend to “over care and fuss him” (apparently!). After all, Dad is still an individual who loves time alone, to reflect, watch TV, and to read.
Turning it around to support others.
We believe that Dad has had Dementia for around 11 years, he is still highly functioning, and can remember several books that he is reading at the same time. He may get me confused with my mum and make inappropriate comments, but I have learned to laugh this off and to leave (after making a cup of tea).
By having a strong support network from the Dementia Community Support Team (Diane and Nancy South East Essex equivalent to Dementia Support), my family, the current manager and staff of Longview Care Home and my husband, I am able to live my life in West Sussex knowing that my dad is well cared for, listened to and understood. I would absolutely recommend learning more about Dementia and asking for help if you need it – caring is exhausting!
I joined Dementia Support so that I can use my experiences to help others. I never want to hear that a carer feels lonely, unsupported, and frustrated. I want to hear the opposite: feeling empowered, supported and fully able to give their best to their loved one, whilst keeping their identity as an individual. I try to use my experiences and how I would feel in other people’s situations to assist with advice that I am giving.
Some of my most memorable moments since Dad has settled includes showing my dad my engagement ring, bringing our dogs to visit, playing shoot ‘em up with a nerf gun, and scoffing masses amounts of Chinese food together.
My dad’s personality has softened, he really is the dad that I always wanted, and I will treasure each happy moment, funny face, and conversation.