Today took its absolute toll on every part of my being. To say I feel completely, emotionally exhausted would not be an exaggeration. I honestly have never felt exhaustion like this. So why the hell at 11.30pm am I still wide awake? My mind, conscience and heart are all desperately trying to work together, to make sense of the last 36 hours of my life. Why I need to make sense of it all is beyond me. There is no sense in the torture of Dementia.
Yesterday morning, as I took my parents shopping, I really did appreciate just how much they had both deteriorated since I was off with them in the Autumn term, late last year. Dad was so lost. I was thinking how totally daunting a supermarket must be for someone who is struggling to find their familiar. It’s a busy place with many people under one roof. My fragile Dad looked so vulnerable. As he asked me if he could swap his Pepsi for coke, I left Mum by the greeting cards and took him to find the coke. As we were stood staring at the bottles of fizzy drinks, my Dad looked so totally lost in his own world. Gone were the days that my larger than life Dad would be talking to each and everyone. Yesterday, he made no eye contact with anyone; Once again, a painful reminder that Dementia had taken my exuberant Dad and left me with this fragile man of total vulnerability.
I had arranged day care for Dad today at The Court, in Rockbeare. I was due to drop him at 10am and collect him at 5pm. This day care would have been his first, and it was to allow him a break from Mum and vice versa. Yesterday, as we got back to my parents’ home after shopping, my Dad was in a pensive mood. He looked at me and said “What happens if I don’t want to come home from The Court tomorrow, Soph?”… Cue my Mum shouting at him that he would be coming home from “that blasted place!” My Mum then hit my Dad twice across the chin. At that point; I felt the absolute ugliness of Dementia. The total disregard for dignity. The eradication of a life’s work of selfless generosity. This fucking evil disease had turned my Mum into the polar opposite of the person she’d been her entire life…
When people tell me that this isn’t my Mum anymore, I’m fully aware of this. My Mum would be absolutely furious if she saw someone hit someone else. She’d be the first to interject and fight for justice. Yet here she was yesterday, taking a swipe at the man she’d spent 56 years of married life with. People can argue, until they’re blue in the face, that my Mum doesn’t mean it. I know this, I’ve lived with my Mum’s Dementia for 3 years. It’s very easy to sit in judgement and tell someone to not get cross with Dementia, but I would argue that you have to be in the moment to appreciate how difficult that is to control. I did shout at Dementia, Dementia had struck my Dad. My Dad’s words “She does this often,” was my final realisation that I had to call time on this home situation.
One thing I have found bizarre during these past 13 months; When I have needed to make an important decision based on the welfare of my parents, it’s my Dad who will offer me clarity and a nudge in the right direction. This morning, I got my nudge from Dad. As my Bugsy and I arrived at my parents’ to take Dad to The Court for his day care, my Dad looked absolutely shattered. My Mum was full of sentiments and kisses as he got into the car. As we left Mum and headed for the home, Dad told Bugs and I that he could no longer live with Mum. He spoke with clarity, he was articulate and had an unusual awareness regarding what he needed. This has happened on other occasions; whereby I cannot cope with a huge decision and it’s my Dad who has offered me the clarity and vision to move forward. I am not a religious person, I do not believe in a God, but one thing I do believe in is the spirit of others. I truly believe that the spirit of others will give you that much needed momentum, at a time where you feel heavy-hearted and beaten. This was certainly true of Dad today. He was guiding me to the right decision for his welfare and a better quality of life.
As soon as we arrived at The Court, Hollie, one of the Managers, was there to greet us. My Dad quite literally fell into her arms and cried and cried. I went to pieces, luckily my Bugsy was there to hold me. My Dad’s tears were that of relief and safety. As Bugs and I stood there, both of us in tears, we knew Dad would not be going home to Mum.
My Dad then walked into the vast lounge and began to talk to one of the residents as if he was home. He was immediately calm and I was immediately comforted by this.
Hollie assured us that there would be a bed for Dad until Sunday, when they had a new resident arriving. She gave me a hug. The staff at The Court are just phenomenal. It doesn’t just seem a job, they have huge, selfless hearts. I then had to phone Mental Health and Social Services with the state of play.
A day of phone calls then ensued. Due to the safeguarding issue of the previous day, it was now Social Services’ role to find my Dad emergency care. I must have spoken to at least 8 different people from various agencies. Each person seemed to offer me justification that what I was doing was the right thing. I needed to make my Dad safe, but at the cost of breaking my Mum’s heart. When I phoned the care agency who provides care to my parents, I held onto the Manager’s words, “Sophie, this has been such a hard decision for you to make, but it’s the right one. It had to happen.” (These words got me through a day of devastation).
Social Services have pulled everything out of the bag and have managed to get my Dad into a home in the interim, until I can find a home that I’m happy Dad can be in. I cannot begin to describe the gratitude I have for all the services involved. My hubby had to endure so many emotional breakdowns during the course of the day. Poor chap. So grateful he was there to help shoulder the heavy responsibility. So lucky to have my amazing Bugsy walk beside me on this journey. Love him so much.
After packing Dad’s case, whilst Mum was out with an Enabler, we drove to The Court. My Dad was sitting in the bright, airy lounge and he looked the picture of calmness… An entirely different person to the scared, vulnerable man who had stood before us this morning. Unbelievably grateful to the staff at The Court for the serenity in which they provide. Just so grateful.
All day, I had cowardly put off telling Mum that Dad would not be returning home from day care. My daughter had been enabling a little boy for the day, so I wanted to wait for Hats to come home, before approaching Mum with the developments. After Hats had finished work, we went to see Mum.
As I placed myself in the middle of Bugsy and Hats on my parents’ sofa, I just could not make eye contact with my Mum. I felt so totally torn; I’d had to make a decision which made my Dad enjoy a much needed quality of life. However, this would bring heartache and sadness to my Mum. Guilt, my champion emotion, was having an absolute fucking field day. Maintaining my cowardice, I just stared at the photo of my brother, Sacha, on the window sill and let Hattie and Bugs take charge of the conversation with Mum. I didn’t once look at my Mum, I literally could not handle seeing her pain at the hands of my actions. A Carer arrived at the house, so we left her to discuss the situation with Mum. She’s a lovely person and could see that we were exhausted.
When I got home, I sat on the kitchen floor and cried my eyes out. I miss my parents so much. They’ve both always been my go-to’s in difficult times. Grieving for my familiar parents, whilst desperately in need of their love and wisdom are difficult emotions to manage. As I sat on the floor, I phoned my Mum-in-law who indulged my tears and sadness. So lucky to have my parents-in-law, they really are amazing. Although there was a 20 mile distance between us, I literally felt my Mum-in-law was in the room holding me.
Dementia, you have absolutely broken me today. The devastation you leave in your wake is that of utter heartbreak.