I feel I repeat myself in my blogs when I describe the ‘roller coaster’ of emotions. However, roller coaster is the most fitting of descriptions. This week has certainly been full of highs, and most definitely lows.
Bugs and I celebrated our Silver Anniversary on Tuesday. We’ve been together for thirty-three years. This man has stood by me since we were twelve years old. That, in itself, is a bloody achievement!!! Yes, we had a blip in 2011, which I’ve mentioned in an earlier blog. Yes, I still feel the guilt over this blip. Yes, I will probably own this guilt until my last breath. However, my Bugsy never gave up on me. He’s forever the calming yang to my crazy yin. Bugsy is, without doubt, my rock. Over the years, I’ve watched him grow from boy to man… He has watched me attempt to grow! Haha!
My brother, Sacha, was born on my Grandpa R’s birthday, 25th September 1971. He was the best birthday present my Grandpa could have been given. Tragically, he was born a very poorly boy. He had sarcoma, and this cancer eventually took his life. I always find his birthday so difficult to deal with, as I just cannot cope with the pain I feel for my parents on that day. When Bugs and I were eighteen, we got engaged on Sacha’s birthday and we married two years later on the 24th September. We then celebrated my Grandpa R’s 90th birthday the day after. It was such a lovely weekend, and my Grandpa loved both the celebrations. It was so important for me to get married around Sacha’s birthday.
Each year, on his special day, I’ve always taken flowers to my parents. This year, hurt so much as I know my parents’ poor brains did not register the day. My brother is very prevalent in my Dad’s thoughts, but he is often stuck in the time where he suffered the devastation of losing his only son. Many times I have sat with him and he has told me how he has just lost his “little boy.” He appears, during these times, to be locked in the time when he had lost Sacha. Dementia is so unbelievably cruel: to lose your child is the worst pain imaginable, but to relive that feeling over and over again is just beyond cruel. The pain in Dad’s eyes, during these moments, is just unbearable to witness. It breaks me.
Mum and I had a meeting with the Dementia Nurse on Thursday. Mum was so calm. I have come to realise that when my Mum is calm, I find it harder to cope with her, I know this is because I can see sadness in her eyes. Sadness that she’s on her own, without Dad by her side. I know I’d much rather have her difficult and argumentative side over this vulnerability. When she’s feisty and awkward, I see this as strength. I think that’s why I find it easier to cope with. When she’s calm and subdued, it breaks my heart.
Ultimately, I just want both my parents’ previous, familiar characters back… Dementia, I would argue that you are the worst sunshine stealer in the world. You steal someone’s amazing soul, but leave the physical body as it was. Dementia, I truly despise you.
Yesterday, Bugsy and I had a meeting at Dad’s home with the Manager and Dad’s Mental Health Practitioner. My Dad has not had a good week. His mood is very low. He hasn’t been sleeping well at night. Mum’s Enablers take her to visit Dad whilst I’m at work. I’m so grateful for this, as it eases my guilt for having to go to work and leave her. Unfortunately, I’ve now had to stop them taking her, as Dad is more low once she has visited him. Each time my Mum visits Dad, she tells him she wants him home. She also tells him how expensive the bills for his home are. This is now learnt behaviour for Mum. She knows that as soon as she is there, she must apply pressure to Dad about coming home. When I take her, I can talk over her or tell her off. Unfortunately, her Enablers are put in an awkward position, so I’ve had to ask them not to take her. Cowardly, I’ve not yet told Mum that they will not be taking her, with effect from next week. I’m going to have to brave it this weekend. Brave is something I am just not feeling right now. Crawling under a rock and hiding from my responsibilities would be my place of choice.
With the vulnerability and complexities of my parents’ situation, they have had to put an emergency DoLs (Deprivation of Liberty safeguard) in place. As it stands, if Mum wanted to, she could actually remove Dad from the home. Now, with the emergency DoLs, she cannot. We’ve got a multi-agency meeting during the next few weeks. The Manager of the home said that this meeting will be so important for my guilt. She said that the decision will be taken off my shoulders. Mum will hear, during this meeting, that the decision to put Dad in the home was for his “best interests.” Right now, I feel sick with guilt: I’ve made Dad safe, but made Mum sad.
After the meeting yesterday, Bugs and I sat with Dad. His mood was very low. He looked so lost. I felt exhausted. I just sat beside Dad and let Bugs hold the conservation. My poor Dad looked so tired: Tired of a confused brain, tired of feeling so lost, tired of being at the mercy of this debilitating disease.
I have felt ridiculously emotional this week. Have cried so many tears. I’m hoping the tears are acceptance – Who knows? I’m so unbelievably grateful for my job. This time last year, I was contemplating giving up my job to be my parents’ Carer. By last December, I knew that this was not the right decision. I had lost my identity. I was no longer Soph, the daughter, I was Soph, the Carer. My job allows me to be me. Working with children is my niche. On days where I feel utterly deflated and beaten, my job really does energise me. So grateful that I listened to my family late last year and made the right decision to return to work. I’ve lost so much, during these last fourteen months, I can’t afford to lose my own identity.
This blog is a rather depressing one, sorry. However, once again, where there’s life, there’s always humour. On Mum’s birthday last week, she came around for a birthday dinner. I normally bake a cake, but I just hadn’t had the time, so I bought a round of iced muffins. Mum is Diabetic, type two. She’ll always say she’ll “have a taste.” This taste is normally about three cakes!! On this occasion, she didn’t disappoint… She ate her first muffin. She was offered a second… “No, I mustn’t.” Lou and I then did our normal, and scraped the buttercream off two others (icing is the best part!). My Mum, by the end of it, had eaten three… Two of which had been crudely destroyed by Louis and I! Marvellous!!