Have you ever had to mourn for a loved one whilst they were still alive and in front of you? I really hope you never have to go through that level of pain. If you have then you will know exactly what I am talking abut here. The idea of it will be alien to anyone who has not actually gone through this. It sounds harsh, it sounds over the top, it is however a reality for some that eats at them for every waking moment.
Recently I went out for our annual school Mum’s Christmas dinner. We had a fabulous time. There was a lot of laughter and happiness in the air. It was a lovely night of catching up. I was sitting next to someone who after some time asked me what everyone always asks me “how’s your mum doing Anjali?” My usual response is “she’s okay. She’s still the same. Nothing has really changed with her” I usually then stare back at the person who has asked me this question with a blank look on my face or I simply look away and wait for the subject to change.
Don’t get me wrong, I don’t want to not talk about her. I don’t want to not share. I always want people to know what happens in our world. I always want to spread awareness. I always want to speak up on behalf of the voices that are not heard. So if ever you ask me “how is mum?” and this is how I respond to you or you have asked me in the past and this is how I have reacted to you, it most likely means that at that moment in time I simply do not have the energy to go into the level of detail I need to go into to really answer that question. Let me tell you now, it is exhausting. Plain and simple exhausting living the two lives I live. One where I stick a smile on my face and face the world as Anjali, Yashin’s wife, Pranay’s mum. A daughter, daughter-in-law, sister, sister-in-law, an aunt. A grand daughter, niece, cousin, friend, colleague, the one always there to help everyone around her and always smiling. Then there’s the other world where I am Illa’s daughter. A smile on my face for different reasons. A smile that holds back tears. A smile that shows mum I am okay and invincible, that I can take on all her troubles and make everything okay for her always. The fixer. The carer. The full time carer. The one who is so in control of everything, so on top of everything that the only words I can use to describe this feeling is ironically “it’s insane”.
So on the mum’s night out, the mum sitting next to me asked me this question. There was a slight difference here, in the way she asked me, the look on her face. She was not just making conversation with me, she genuinely cared about my answer. I could see this and genuinely felt the warmth from her. I took a deep breath and let loose.
I told her that my mum is not okay. She’s not been okay for a long long time now. I explained how she once lived a life where she shifted from one extreme to another. We had some low days. Really really low days and then every few months something would trigger something within her and she would start to get quite manic. We have lived in this cycle for years… close to 18 years since I have been her main carer and this was the case even before that, though over the years things changed and the dynamics of how this evolved continued to change our lives. Many many years ago she once had “normal days” too. This feels like a lifetime ago. During this time she was my mum. She would cook for me on these normal days. She would do things Mums do for their children during this time. This was a lifetime ago.
I told this mum my life story in a nutshell. I told her how my parents separated when I was very young. I lived with my dad. I told her that I was initially scared of my mum as a young child once we were away from each other and I told her that it was because of my amazing Dad who made sure I maintained this relationship with my mum, which is why we are where we are today. He spent weekends driving up and down the M1 for us. I will never forget all those years of those long drives back and forth. I will never forget that even when I was older and Mum was my responsibility, all the hours he spent driving me to different hospitals, sometimes in the middle of the night. I will never forget.
I told her that as my life has progressed and things have changed in my world my mums illness has followed and she has progressively gotten worse. When I met Yashin and eventually introduced him to my mum her mental health deteriorated a little. When I announced that there would be an engagement and then the wedding, another dip. The lead up to the wedding and just after when life truly began for us. When I told her I was pregnant, things got pretty horrendous through my pregnancy. I did things and saw things that a pregnant lady simply should not be dealing with during this precious time. When Pranay was born. The first time she came to stay with us after Pranay was born. Pranay’s first birthday. Pranay’s second birthday. Pranay’s third birthday. And well here we are now.
We have had to make some major life changing decisions during this time as we have reached each peak. Mum originally lived in a two bedroom house. From here I moved her into a one bedroom flat which had on-site support during the day for her. When this stopped working for us and for her, we had to look at a new flat, now with 24 hour on-site support should she need it. The hardest decision to date has to be the one where we decided she could no longer cope living on her own even with 24 hour support. It was time for a residential care home. 24 hour care. A decision I had always dreaded making but one that to happen to ensure someone was around for mum when I couldn’t travel as often with my baby.
So much has gone into each stage it would be unfair to briefly touch upon it. It would be unfair on mum and her story. It would be unfair on each hospital visit that accompanied it. It would be unfair on everything I went through and everything I felt during those times. Those times deserve so much more than a brief mention. They deserve a chapter each if ever I go on to write a book.
One thing that stuck with me after my conversation with this school mum on our Christmas night out and it’s probably the thing that has made me write this today is that she told me she had read my previous blog and she felt so much more at ease about approaching me with this subject. She felt that by me putting this out there it made it okay to ask me questions and find out more about Mental Health without feeling awkward about it. She said that she felt she knew nothing about this stuff before she read my blog as she felt she lived in her own little bubble where these things do not exist and by opening this door she felt she was allowed into a whole other world. This. This right here is why I started writing this blog. I know for a fact that this has been the reaction of many others and for this reason I shall continue to share our story.
It takes a lot out of me every time I sit and write about this stuff. This year has been a particularly challenging one and that is why it has taken me five months to write my second post. The night out I talk about was actually two weeks ago and I started writing this blog the next morning. It’s taken me this long to get my thoughts out because it honestly takes a lot of energy to do this. I feel drained after I write and I need time to recover. This is the behind the scenes stuff that the world would never know about.
Last weekend Yashin and I went to see mum. He had not seen her for a while as I usually do a day trip during the week while he is at work and Pranay at nursery. It’s usually a race against time. Or I go on my own on the weekend so that we can work around Pranay and mum. Yashin hears about this slow deterioration I talk about every time I see her but he got to see it for himself last weekend. In the car on the way up he told me we should take mum out for some food. I told him she’s not that person anymore. In the couple of months that he’d not seen her, such a huge change was waiting for him.
When we got there Mum was in the toilet. She came out and stood in the doorway just staring at us both. She smiled briefly. I asked if she had flushed the toilet or washed her hands and she stared at me blankly. She eventually said “I forgot”. I told her to go and flush the toilet and wash her hands and she turned really slowly and went back into the bathroom. Everything now takes a long time and it’s almost as though we are watching a slow motion version of Mum.
When she came and sat down, Yashin tried hugging her and talked to her. We both asked her questions. We both shared stories about Pranay and how great his school Christmas concert was. Yashin showed her the videos on his phone. Mum’s reaction to all this was just blank. She was not interested or if she was, she didn’t know how to show it. I then questioned her about food and what she’d eaten. Not much. We ordered her favourite things and waited. This in itself was a real process. Mum wanted us to leave. She looked at the clock as we sat there and she looked at her bed. She wanted to sleep in her bed and she wanted us to go. We chattered away despite this and tried to keep her focused on us being there for her.
When the food eventually came I dished it out for her and to my surprise watched her as she tried to pick up food with her whole hand dropping it as it got to her mouth. She was unable to hold the food properly. She was unable to get the food to her mouth as she normally would and she was trying to stuff in more food than she could fit into her mouth. My initial reaction was a loud “MUM. WHAT ARE YOU DOING?” I quickly reigned in my feelings of absolute shock to this new behaviour and thought logically. I took a spoon and filled it with food and I fed her Masala dosa. One of her favourite dishes. I fed her the rest of the meal. She chewed and swallowed and opened her mouth when she was ready for more. Inside a part of me died. I know she feeds herself daily and I now know that she makes a bigger mess than usual. The care workers want her to have as much independence as possible so they help clean things up once she’s done rather than feed her. I think back to my initial days of teaching Pranay how to feed himself. As every mother’s instinct powers through. You want your child well fed and relatively clean at the end of the meal. I wanted this for my mum. Just on this one day while I was there with her.
I don’t know what has changed. Medically she has had all the checks and she has been given the all clear. I am told that this is the nature of her illness and sadly given her particular circumstances, this is the way it is going to go.
I don’t know what Yashin thought when he saw her that day because when we left her we both sat silently in the car. He did let out a big sigh and said “Ohh Illa” as he sat in the car and then we did not say much to each other at all. I cried quietly and he held my hand all the way to Wellingborough where we had left Pranay with my Fai and Fua. He’s my pillar of strength, my support. We don’t need words to speak. Our silences speak volumes. The warmth of his hand is enough. Being held in his arms it’s all I need on some days. Silence. A mutual understanding. A connection like no other.
Every time I cry it is not because I am weak, far from it. I think I am the strongest I have ever been. I feel that my level of understanding about people and life has never been as clear and as certain as it is right now. I have never been more at peace with myself and with life in general. I now understand what life is about in a way I never did in the past. I understand relationships better than ever before. I am able to read situations and understand them better. I do not cry because I am weak. I cry because I see things that make me feel sad. I cry because I feel helpless. I cry because we live in a world where grown adults with special needs are so forgotten about that they cannot comprehend a simple gesture, a simple act of kindness. I cry because my Illa has been forgotten by so many at a time where she must miss them the most. I cry because I am disappointed and I feel helpless. I cry because Leicester suddenly feels so far away. I want to give her everything, the best life and I cannot. I cry to release.
Today I feel particularly sad. I’ve just come back from a long Leicester trip. Hours and hours of sitting in traffic. It took me over three hours to get there and over two and a half hours to get back. I sat with Mum for an hour and half. As I was getting ready to leave this morning Pranay who knew I was going to see Ilu Nani said “Mumma, Leicester is sooo far away” I looked at him and said “Yes baby, it really is” He knows this because bless him I have taken him back and forth on that M1 for most of his little life. Only recently he’s had a problem with this. Only recently I’ve stopped taking him because it suddenly dawned on me that the two of them don’t work together the way they once did. Mum is no longer excited by or interested in Pranay how she once was and he has picked up on this, the clever little thing that he is. This morning we said a prayer together, he tells me that they say “Dear God” at school and so we decide to say a prayer to make Hanuman Jai Jai aware that we need Ilu Nani closer to us. My intuitive little angel. Today I felt particularly sad as I left the care home with a classic happy face for them to see and then cried most of the drive home.
Today I went alone. Today she was the same as last week. I fed her the same food again because that’s what she asked for as soon as I sat down! She knew what she wanted to eat and said so before I had even taken my coat off! That right there, that’s a tiny weeny bit of my Illa shining through.
Today I cried for a different reason. I had taken personalised Christmas baubles for all the other patients. We put them up on the main Christmas tree in the communal area. I don’t think I have ever seen grown adults get so happy or excited about anything in the same way. They looked for their names, they pointed out each other’s. One lady smiled and smiled. I don’t think I’ve ever seen her smile before today. She came to me and she asked me my name, I told her “you can call me Anji” she said “thank you Anji! Thank you for putting my name on that tree” and she repeatedly said “is that MY name? Did YOU put MY name on that?” I repeatedly said “yes!” and smiled at her “yes that’s your name” she kept touching my arm, “you did that? …you did that for me?” she was beaming.
Another man made me laugh… he told me he hated Christmas and he hated the Christmas tree. He asked why I put his name on the tree. He said “now I have to like the Christmas tree, I don’t want to! But you’ve put my name on it so I like it! I don’t want to like it” I said sorry to this man and told him his name looked really beautiful in the tree.
My mum didn’t leave her room, she didn’t come to look for her name in the tree.
Thank you for reading our story. As always I will finish with a thought we should all try to follow…
Show it, say it, do it… Make a difference 🙏
She's not mad, she's my Ilu 