On this journey with my parents’ Dementia, I’m really learning to ride the waves of emotions. I am the first person to laugh the loudest, but I’m also the first person to cry when sadness overwhelms me.
This week I’ve felt completely beaten by this situation. I’m feeling bereft of all that is familiar to me. Whenever I hold my Dad’s hand, I look at his beautiful, olive skin and see a lost soul staring back at me. I’ve been losing more and more of my Dad each time I see him. I crave to hear him he say “Love you kid.” I miss all the familiar about him. He has forever been: the voice of reason, the joker of the pack, the life and soul, the philosopher, the non-conformist, the most intelligent family member, the greatest judge of character, the most selfless soul. I could go on… Now, he looks at me, desperate for me to say the right thing to calm his soul. I don’t know what he wants to hear, I don’t think he knows either.
Right now, Dad is so unwell. He is so troubled and gripped by confusion and the worst paranoia. His brain is firing in so many different directions. His state of mind is not good at all. Yesterday, Hats, Bugs and I took Mum to visit him. This is always difficult to police. Mum, as usual, was fussing around him. My Dad could not cope with her at all. It is like a switch for my Mum… The minute she’s in Dad’s company, her whole persona changes. She can be the calmest person on the way there, but the moment she sees Dad, her energy levels soar. As we were sat in his lovely room, Mum was making unnecessary adjustments to Dad’s wardrobe, re-organising his clothes and charging about. My Dad just cannot cope with this, he is exhausted and he finds her energy difficult to cope with. Fifty-six years of marriage and now this horrendous disease means they cannot be in each other’s company for too long, as it’s detrimental to their well-being.
Another thing my Mum will do is try to correct Dad when he’s confused. For instance, yesterday he felt sure he’d opened a school during the night, and a lot of the staff had been struck by illness, so he had to run the school without any help. This was met with Mum’s “Rubbish, Derek!” This only served to exacerbate Dad’s confusion, as the moment felt real to him. I would always argue that it is kinder to the person with Dementia to agree with them, and ask them questions about it. My former Mum would have had the patience of a saint for this illness.
Yesterday, I felt pretty unwell with it all, both physically and mentally. My body and mind felt exhausted in equal amounts. During these moments, I have all the patience in the world for my Dad, the same cannot be said with regard to my Mum. When she’s upsetting Dad, I cannot help but feel defensive. When she’s not around Dad, I find her much easier to cope with. Last night, as I reflected on my time during the day with Mum, I just could not stop the tears.
Guilt is such an unwelcome host, yet is prevalent in my life every day. My Hattie has been such a support to me this weekend, but she’s always my support. She said earlier, “Mum, you will never think you do enough, even when we all know that you go above and beyond.” It does not matter what people say, I’m still stuck with the feeling that I could be doing more. Guilt is an extremely destructive emotion, it prevents you from liking and accepting yourself. As a Carer to my parents, I’ve been offered counselling to help me cope with my role. I know, for my family’s sake, I need to take advantage of this and accept the help. Devon Carers once offered me a ‘buddy system’ whereby you pair up with someone else going through a similar experience with Dementia. My family all stopped me from taking this offer up, as they knew it would be totally counterproductive. Unfortunately, I’m a human sponge, I know that I’d end up soaking up all their troubles too and not benefitting from it whatsoever. However, I’m definitely going to accept the counselling. If it can help with the burden of guilt, it has got to be worth a try.
Feeling emotionally wobbly today, I went to see Dad this morning, without Mum. Hats came too. My Dad was incredibly low and fragile. It was a painful visit. However, it is always much easier without Mum being there. The three of us sat in the dining room and looked out over the beautiful gardens. A lot of the time we didn’t speak. As he sat there, he’d occasionally reach out and hold Hats’ hand, then he’d grabbed mine. During these moments, I hope, at the very least, his spirit is comforted by our silent presence.
Grieving for someone whilst they’re still living is such a heartbreaking process. I’ve often asked myself if it would have been easier for Dad to not have survived that horrendous stroke last July. I don’t know the answer to that. Ever since, he has suffered a rapid decline in his mental health, gripped by Dementia. Selfishly, I know I want to be able to cuddle my Dad for as long as is humanly possible. I just wish his brain would stop being cruel, plaguing him with confusion and anxieties. It is totally heartbreaking to see.
After seeing Dad, Hats and I picked up Mum and took her to our favourite place in town for lunch. My relationship with Mum is much better when I’m indulging her and not policing her behaviour on a visit to see Dad. My heart also breaks for my Mum’s situation. Yes, I’ve had more years to accept her deterioration. Yes, her Dementia is not as rapidly destroying her as Dad’s is. However, I would always argue that this makes her extremely vulnerable in the big world. I know that her living arrangement is a ticking time bomb. I worry each day about her being on her own. However, her stubbornness is now proving to be her strength.
Regardless of how old we become, we’re still our parents’ children. I really have found this transition from child, to parent of my parents so difficult. For fear of repeating myself, I grieve for my familiar parents so much. They were always there for me, even when I tested their patience. They were always unconditional with their love. There was never a time when they weren’t they for me. It is only right that I put my heart and soul into their hour of need. I read a quote that said your time should be “quality, not quantity.” I’m trying my best to live this. However, I constantly feel that I need to make up for the absence of Nicole’s presence in my parents’ life. I know this needs addressing. It’s her guilt to live with, not mine.
I am trying my best to keep humour in my life. My Louis is busy studying hard for back to back exams tomorrow and Tuesday. I know he’s eternally grateful for the fact that he inherited his Dad’s Maths prowess. (The kids at school know not to ask ‘Mrs V’ for help with their Maths! I wear that badge with honour!) I keep reminding Lou that he works hard to pay for my nursing home bills one day….. He repeatedly reminds me that he’s going to put me in a tent on the lawn of a home, and he’ll have a private arrangement with them, so I can use their ‘facilities’ when needed!!!! Apparently, it will be like an everyday Glastonbury for me… I’m not sold!!