Dementia – Living Grief

The memories that we hold of our parents are deeply embedded in our minds. There are favourite memories and not so favourite ones, and there will come a time when those memories will be cherished whether they were good or bad. Our experiences with, and memories of our parents, will continue to mould us over the years into who we are today, and who we may be in the future.

My dad died when I was 2, so I have no memories of him. I spent many years wondering how my life would be if he was still around. My childhood memories are full of my mum, she was such a huge, dominating and powerful force – the fierce matriarch of the family. My mum ruled her home and business with tough love and iron fists, you didn’t mess with her at all, whether you were her own children, siblings, employees, friends or even strangers!

Fast forward 45 years and I am here with my mum right now as I care for her, making sure she is ok. My mum was diagnosed with dementia two years ago at the start of the Covid pandemic – dementia is such a difficult word to accept and live with. But, once you do hear that word – it doesn’t have to mean the end. It will require research, patience, understanding, compassion and not being afraid to ask for or being ashamed to admit that you need help. It is a lot to carry, we don’t need to do it by ourselves.

It has been a difficult journey to see mum deteriorate since that diagnosis. We had always suspected she was experiencing it, the signs had been there for a long while.

My brother is now the backbone of our family, he is my mum’s full time carer and it’s incredibly important for anyone who is a carer to also have a support system so they can get some much needed respite – it can be challenging and difficult. If you do know someone with these responsibilities please check in with them and ask what you can do to support them. Carers can often become so engrossed in looking after someone else that they neglect themselves.

I have never had a good relationship with my mum, we have had periods where I wouldn’t speak to her for many years because of family arguments, but I have to put that aside now. For my mum’s sake, and especially for my brother. I can’t keep carrying my hurt and expecting my mum to apologise – she never will, and that was even before dementia had set in. I don’t know how much time we have left with her, all I know is that we have to make it the kindest and safest time that we can. I joke to my family that mum will outlive everyone to at least 175 because she’s so stubborn. But amongst the humour which I will use to help me get through life, there are times that I will get frustrated, I will cry and I feel helpless that I cannot do more to help, or reverse the symptoms and mental decline that dementia brings with it.

When we reach a certain age and take on the carer role for our parents, we realise that it’s so much more common than we think. As I start to talk about how dementia has affected my family, it enables others to also talk about how it has affected theirs. It brings a small bit of comfort to know there are people who do empathise and also know how hard it is to care for someone with dementia. I let my work colleagues know that two days a week I work from my mum’s house and so my ability to be in meetings and respond to emails will be limited or delayed – it’s really important you are able to articulate this to people. There have been times when my mum has heard voices as I am on a work call and it has frightened her and made her think she has strangers in her home. I can’t use my headphones for work calls as I need to be able to listen out for my mum, to make sure she hasn’t fallen over, or I am there to bring her something to eat or drink, or I need to be there to hug her and reassure her. There are so many things we need to watch out for.

One very important thing to be aware of when we are caring for someone with dementia is that we, and the person we are caring for are experiencing living grief. I feel sad for my mum that she is now a recluse and refuses to go out even when we try to encourage her to come outside with us. There are days where she is confused and frightened, sometimes there are hallucinations. To see my mum so vulnerable after many years of her being such a formidable force is tough, it’s heartbreaking and we feel helpless. She is not only a prisoner in her mind and body, but also in her own home. To watch someone become a shell of their former selves is such a difficult transition to deal with. Then there are days when the rage sets in, my mum will have angry outbursts that will last for hours, she will be cruel, she will bully us, she will say the meanest things and one of the hardest things to deal with is not to let those comments hurt us. Those days are really tough, then she will forget what she has said, but we can’t. Those words have pierced us, she has reopened many scars, and given me and our family new ones. One of my friends gave me some very valuable advice for dealing with those difficult times – we have to back down. There are no winners and no losers, the person with dementia will not remember the things they said and this is a pattern that happens often. They won’t know that they made you cry, they won’t know they have triggered you from childhood memories. This is evident in the way my mum will have been screaming and shouting at us, then five minutes later she will call out to us and ask if we’re ok, she has forgotten what was said before. We need to find a way to forgive and move on, no matter how hard it may be. We must find a way to let the hurtful comments go.

To all of those who are in this situation, please also follow up with a GP and appropriate health services so they can make referrals to help support your family or the person you are caring for. Send them correspondence via email and clearly list the symptoms so they have this information on their files and you have an audit trail. You have to be persistent, don’t give up. We had to fight for numerous years to get mum formally diagnosed.

I always live in hope because without it, I would struggle to continue each day. So I share my hope and vulnerability with you so that if you are in the same situation, you also find the strength to keep going. We have to keep going, there is no other option.

I hope you have a strong support network to help you navigate through this time. I hope you don’t keep your emotions to yourself and you let people know how this also affects you.

I hope the cruel words that you may hear from the person you are caring for, don’t pierce through your heart and soul, I hope you can forgive and heal. I hope that you are able to have some sparks of joy when those with dementia have those lucid moments and can recall happy memories, no matter how small those moments may be.

Most of all, I hope that you know that you are not alone. I see you, I hear you, and even though I am a stranger, I am also here for you.

In loving kindness. ❤️

If you would like some information on dementia, you can access the following:

Dementia UK – https://www.dementiauk.org/

The Good Care Group has listed various dementia charities in the UK who you can contact for support

Dementia charities in the UK

Grief – It’s so hard to say goodbye

Grief is the purest sign of love.

It’s a culmination of the memories, moments & time we spent with those we cherished.

We never have enough time with those we love.

If only we could have had one more day, one more week, one more month and even better, one more year to let them know in person how much we loved and appreciated them, to hug them tight and not let go.

No matter how many losses we experience over the years, each new passing will still catch us.

Time stands still for a moment, excruciatingly so.

We wish we could rewind the clock and relive those moments again, to see our loved ones again, no matter how briefly.

The firsts are the hardest – birthdays, anniversaries, first dates, Mothers / Fathers Day, Christmases… so many dates etched in our minds of time spent together.

Over the years, our wounds from grief become a little smaller and become scars that are held together with a lifelong plaster.

Sometimes the plaster comes off quickly, other times it stays, to be pulled off again, sometimes when we least expect it.

We endure and we survive.

If you are blessed to have loved,

Don’t be afraid to grieve.

May you find peace and strength over the years,

Keep your eyes open for the signs from our loved ones checking in to let us know they are near. We may see pennies, birds, butterflies, hear favourite songs… they are all around us.

Until we meet again.

The Power of Love

One of my favourite songs is Frankie Goes to Hollywood ‘The Power of Love’. I experienced how powerful love really is on my wedding day very recently.

I spent the early morning in tears because I was missing my dad. I didn’t even get to know him as he passed away when I was 2, it’s a strange feeling to miss someone you don’t know, but you feel their presence in your life. One of the traditions as we all know is the father of the bride walks his daughter down the aisle. As I was meditating and talking to my dad I felt such a huge feeling of love, not just from my dad, it also came from other family members and dear friends who are no longer with me. It was incredible, and very emotional.

I am sharing part of my wedding speech that I wrote on behalf of my dad. I am sharing this in the hope that anyone else who is grieving, or suffering from a broken heart will find comfort from my words.

“Love is one of the most powerful forces in the world. It can break hearts… most importantly, it can also heal them and gives us great strength and courage. Love can even be felt and seen beyond the physical realm. We have all lost those we care about, over the years they send us little signs to let us know they’re still with us – whether it’s in the form of white feathers, dragonflies, pennies, or my particular signs – butterflies and robins. Keep your eyes open as love is all around us. Don’t ever be afraid to open up your heart, even if it’s been broken multiple times. Give love a chance and show it whenever and wherever you can. Be kind to one another and we can heal the world.”

In the week leading up to my wedding, I’ve had a beautiful black butterfly outside my window each day. I work from home and when I look up it was fluttering outside my window and would rest on the wall where I could see it.

On my wedding day, just before I made my entrance to the ceremony, my friends told me a big beautiful black butterfly had flown into the barn and was flying around. I was too nervous to notice, everyone was looking at me and all I could do was look ahead as I was worried I would trip up as I was wearing heels and a dress instead of my usual Air Jordan 1s and combat trousers!

The barn where we got married

As the ceremony finished, and we had just finished signing our wedding certificate I looked up at everyone. The butterfly came towards us, making a path towards me and it flew past me back outside. My Baba, grandma and family were with us that day. I felt their spirits and energy so strongly.

We also had a rainbow later on that afternoon.

A few days later on our mini moon we have been visited by a little robin in the mornings. The robin sits in a bush and looks at us as we finish our breakfast.

Whatever you are going through I pray that the days ahead of you are kind, that you find peace, and you have the support of friends and family to help guide you. If this isn’t possible, please know that you are not alone. Don’t be afraid to speak up and ask for help. There are people who you don’t know who will offer support in times of darkness.

Love is here and love will heal us all.

A Father’s Love

I’ve never been a fan of Fathers Day. This is because my dad passed away when I was 2 and I have no memories of him which torments me even to this day. I feel like a part of me will always be missing and I will always be soul searching to find some connection to him.

I would love to know who he was, what he liked, what was he passionate about, what was his personality like, what were his favourite foods, songs, did he have any hobbies? These all remain a blank to me, my mum refuses to talk about him. The things people don’t say about someone can speak far more loudly than the things they will say. What happened during their time together to make someone so bitter and angry?

Over the years I’ve heard little snippets, but I would struggle to even write a top ten list of things I know about my dad. For those who have lost their dads and were blessed to have a number of years, experiences and memories of them, I often wonder if that is even more harder to live with.

How can you miss someone you have no memory of?

I miss my dad every day. If you have ever wondered if it’s possible to love someone you don’t even know, ask anyone who has lost a parent when they were very young. Yes it is.

There have been a few times over the years when my life has been in a danger and I have felt a huge protective force intervene and save my life. I know without a doubt it’s my dad, don’t ask me how, I just know. I sense his spirit which I find comforting, but it also leaves me yearning to be able to physically hug him and talk to him. I have so many questions I want to ask. What would my life have been and be like if he was alive? This is something I think about often. It also feels a bit strange to be grieving for someone you don’t remember, there are so many layers to grief when you lose a parent at a very young age.

So this year, like every year, I think about my dad and I say a prayer and send love to all the people who are also missing theirs. May you find some peace today, I hope you also feel the love of your dad even though they are not physically here with us.

Namaste. 🙏🏽💗🙏🏽

Growing into our power

It was my birthday this week.

I am blessed and grateful to see another day, another year, especially during a time of worldwide collective grief as the pandemic continues.

Despite the difficulties of the last eighteen months where I have been actively healing myself and learning from some very difficult lessons, I have finally been feeling more at peace recently, the fog that had consumed me for many months has lifted. I am aware that it may return again, and I will be as prepared as I can, life is always like the ebb and flow of water. Maybe this is why when I’m near the sea I love to wake up early and head down to the beach, I will sit on the rocks and look out. I think about loved ones I have lost, I give thanks for everyone in my life and I will say a prayer for those who are hurting. The sound of gentles waves provides a healing soundtrack for me, although I am also very aware of how powerful and destructive the sea can also be.

As I express gratitude for another year of life, it reminds me of the time I nearly drowned on a holiday in Costa Rica back in 2010, I got pulled out by a rip tide and couldn’t make my way back up to the surface. I struggled, kept getting pulled under, then after a few minutes a calmness overcame me, everything was black and I was sinking, I knew I wasn’t going to make it and I suddenly became frightened and said a prayer in my head for help, that I didn’t want to go so soon. Within an instant, there was a blinding white light all around me and a huge surge of energy under my feet that propelled me like a rocket back up to the surface. My best friend’s dad and uncle had swum out to look for me and they had a boogie board with them, they put me on the board and swam back. We got hit by big waves, rolled over numerous times, it was truly frightening. I will always be grateful to them for saving my life, whilst risking theirs, I think about this now and again, I will be eternally grateful to them. I also know I was saved by divine intervention when I was drowning and asked for help, I felt the love and protection of my dad who passed away when I was 2, this has happened a few times when I have been in extreme danger. I can’t explain it, these experiences have always made me aware there is so much more beyond the physical world. We should open our minds and hearts to so much more than what we can only see and touch.

Nearing the end of my fourth decade has made me realise how empowering and important self acceptance is. I wonder if we can actively choose to accept who we are in earlier years, to avoid many years of angst, doubt, putting up with bad relationships and friendships, allowing people to continually hurt us, take advantage of our kindness etc. Why does it take so long for us to feel comfortable about clearly articulating our boundaries, choosing not to let people who disturb our peace to stay in our lives. Is this something we can start cultivating from much earlier, or do we need to go through the many tough lessons over the years, until we learn them? I have a belief that if we keep finding ourselves in similar situations that are harmful to our wellbeing it’s because we didn’t learn the last time, so we have to repeat it. It takes a lot of strength and courage to admit we need to reset ourselves, to change our lives for the better, break old destructive patterns, rewire our neural pathways, cut out people who are not good for us, leave toxic jobs – we can live the life we choose, or do we live the life we have been given?

Knowing that we can create our own destiny is empowering. What kind of person do we want to be? What kind of relationships do we want to have? What do we want from life? What steps do we need to take to make our wants and wishes become reality? We can define this, and plot out the steps it takes to get there. Don’t be sad if you lose people along the way who don’t have your best interests at heart, they are not your tribe. Don’t be afraid to cut loose, don’t let people take up your energy who don’t deserve to be gifted it. Don’t be a people pleaser when the only way they will be pleased is at the detriment of your wellbeing, life path, dreams & goals.

Thank you for another day. For allowing me to continue my journey – I am ready to continue walking with, learning from and loving those who cross my path.