Fear, Hurt and Healing

I’ve been dreading this trip for two months.

With each passing week as the date got closer to me flying to Hong Kong to see my mum, my anxiety increased to the point where I was having regular panic attacks each week. My heart would be racing, I couldn’t breathe, my stomach would cramp and I would break out into cold sweats.

The time has arrived. I am now here with my family so I can take care of my mum whilst my brother and his wife have some much needed respite and can get away for a little break. My visits to Hong Kong as an adult have not been very pleasant and so that’s why I haven’t been for nearly 25 years. I would get openly stared at and have people be rude to me because I didn’t fit in. That was also adding to my anxiety. I’m really glad that it hasn’t been as bad this time around.

If you are wondering why I would get panic attacks about the thought of seeing my mum, there is much to explain and I’m very aware I need to change this pattern and how I feel. Rewiring my brain and reactions to think and behave differently is challenging, there are so many triggers of being with mum that put me into anxious mode. I know that she also gets anxious about us too which is where the screaming, shouting and erratic behaviour comes from. I have the benefit of being able to change my patterns of behaviour, mum doesn’t have that ability and so this is something I need to remind myself regularly.

I don’t want to continue thinking and living in what was. I want to be present and improve what will be.

I was recently asked to name a happy memory I’ve had with my mum for an incredible campaign that I was involved with for a dementia charity. I couldn’t think of one and I ended up choosing a memory that involved my dad because even though he is not physically here, and hasn’t been for many years I experience his love and reassurance regularly.

It breaks my heart that my experiences with my mum have for the most part been unpleasant, painful, shameful and frightening. My mum in her younger years was so powerful, dominant and strong. I partly admired and yet also greatly feared her in those days. My mum was tough and resilient. In the early part of her dementia before we received an official diagnosis, we have seen those traits turn into dementia rages which would last for hours, sometimes days. They were exhausting and we would be constantly on edge and walking on eggshells around her. Scared that anything we said or did, or what we didn’t say or do would make her fly into a rage at us.

Now I’m here.

Spending some much needed time with my brother and his wife which I really value. I worry about them constantly being so far away now and looking after mum. I also carry tremendous amounts of guilt as I don’t have the ability to walk down the road like before when they lived in London. I have very little capacity to help look after mum since they moved to Hong Kong. For anyone who has taken care of loved ones with dementia, we all share similar experiences. It’s incredibly tough, and there will be moments where we will break down and cry out of frustration and fear of what may happen… yet we must go on. We cannot give up. We live for the small moments, the little sparks of joy where the love and acknowledgment is seen and we feel that energy. For us though, love was never seen or felt in a healthy way – only out of anger and disappointment. I am so sad for my mum she also had a very difficult and painful upbringing, and it has been passed down to us.

There are many things over the years that have happened in my family which we deliberately keep from mum and only tell her when absolutely necessary as we are all worried about triggering her rage. We also don’t want her to worry and get anxious about us, which she does constantly.

Today we had an incident where we had to tell her some of the things we have been withholding, we couldn’t keep them a secret any longer. We were all nervous about it and expecting the screaming to start and I could feel my own anxiety, and that of my brother and his wife’s increasing. We were all fearful of mum’s reaction.

There was no response. No flicker of acknowledgement in her eyes or face.

The dementia deterioration has taken many of my mum’s memories. She didn’t know who we were talking about, even though they are people who are very dear to us. We were talking about our own families, and those which we have married into. We watched mum so she could absorb what we had told her, still no response.

I know this week may have some difficult times ahead for me as I will be on my own with mum. I can’t let my fear and anxiety get the better of me. I will do my best to be patient, loving and kind to someone who has shown me so much cruelty over the years.

I forgive my mum regularly from afar for my own mental health and wellbeing. I also have to forgive her daily now I am here.

Nothing I ever say or do will ever be enough for mum. I can’t be the person she wanted me to be – a replica of her.

I can only be me. Sorry mum.

I wish you could see we only want what’s best for you. We have done so much over the years to heal our childhoods so we are in a position to take care of you now.

We deserve to heal. I hope together we can, no matter how hard the journey may be.

I am Enough

I lost my shit this week. A bit more than I had last week, and a bit more than the week before.

Sometimes we carry burdens for far too long by ourselves, thinking we can sort it out and everything will be fine. Then these issues and problems don’t get sorted, and like a dripping tap more get added until we just can’t deal with it all and then our cup overfills and we burst.

I cried. I’ve been crying almost every day for a few weeks now. My anxiety attacks have come back big time.

This is mental health awareness week in the UK. It’s been a strange feeling to stand up in front of my colleagues and let them know we are there for them. We have organised various activities over the next month to encourage them to take care of themselves and mange their mental health. I am struggling to manage my own at the moment. I’ve always been very good at smiling to pretend everything is fine, putting on my positivity pants (in my head they are sparkly and have puppies and kittens on them), and making people think I’m ok when I’m not. I can’t keep wearing this mask – it’s exhausting, and I’m so tired. So my mask has dropped and I’ve opened the flood gates.

It can be scary admitting we need help. I’m always worried about letting people down – particularly at work where so many people depend on and look to me to lead and to keep everyone and everything on track. My boss has been amazing and is helping me navigate the work pressures and stress. I know there is light at the end of the tunnel, I have to hang on for a little while longer.

This week I’ve had a few wake up calls.

Drip, drip, drip… the constant drops of other people’s words, expectations, behaviour and actions, worrying about my friends and family. Juggling things in my personal life. Trying hard to block out the overwhelming difficulties of what’s happening globally. So many are struggling and hurting. I also have ongoing doctors and hospital appointments to try and pinpoint what’s going on with my health. It all adds up.

I’ve also been worrying about an upcoming trip abroad to look after my mum who has dementia. I have a very difficult relationship with her and this trip has made my anxiety skyrocket with each week that passes. I have to keep telling myself to stop thinking the worst about something that hasn’t happened yet. I want to be prepared though, so my inner child doesn’t get hurt time and time again whenever we are in each other’s company. It’s so hard to not let her cruel words pierce my heart and disturb my soul. I must find a way to get through this because I’m the one that is aware of what is going on around me, my mum has lost this ability.

I must be strong, I must be kind and I must be patient. I also need to prioritise my wellbeing.

I’ve made an effort to eat better and to make time to exercise regularly which always makes a big impact to my mental health. It’s hard though, when you’re exhausted from the mental battle that you fight every day. Trying to muster up some energy to exercise – it does make a difference so I put on some music and push myself or I go for walk around the block. Making myself move is important so I don’t just sit on the sofa and stare blankly at the walls.

I’ve also started journaling again. Sometimes it’s the odd word that describes how I’m feeling, or it might be sentences that don’t really make much sense. I need to get the excessive thoughts and worries out of my head so they’re not swirling around and getting tangled up with each other. Trying to find peace amongst the busyness. I’ve been chatting to my husband and best friends letting them know I’m not in a good place, which isn’t easy to admit. The love and support they have shown me is incredible. I’m so thankful to to have my tribe, my soul family and the kind messages and support from people I interact with on various social media channels – I appreciate you all so much. This is one of the most compassionate things we can do for ourselves, it’s ok to say that you aren’t ok and that you need some support. So many of us are told we have to keep a stiff upper lip, we can’t lose face, or don’t talk about your problems as it means you’re weak. It’s the opposite – being vulnerable and asking for help takes incredible strength, it’s a huge act of kindness to ourselves that we deserve to allow. Bottling things up not only damages us mentally, it can also manifest into physical ailments if we don’t allow it to surface, talk about it and release it. Like bubbles rising to the surface – set them free.

I will get there.

If you are also going through a hard time at the moment I send you much love. I hope you have a strong support network to help you and please don’t be afraid to ask for help. I am so grateful for mine, although sometimes I keep things to myself because I don’t want to worry them. I need to work on that, it’s always been a work in progress.

I am always a work in progress.

During these challenging times we must always remember to have hope and know that this is temporary.

This too shall pass.

Yin & Yang

Dahlia in the early morning sun

Life has been so hectic lately. I’ve been trying to organise so many things, help loved ones & juggle work priorities whilst navigating my own health issues. It was time for a hard stop and a reset, and what better way to do it than attend a yoga and meditation retreat with my amazing Yin yoga teacher Jenny.

How often do we block out time for self care, to allow ourselves to recalibrate, to heal and to focus on what we need and want on a spiritual and physical level? We need to make time before it’s too late. One of my work colleagues reminded me recently that “health is our wealth” and I can’t keep running at one hundred miles an hour, I need to slow down. I need to listen to the many signs my body is telling me, people compliment me on my strong mind, however a strong mind needs to work in harmony with our body.

My best friend and I attended the second half of Jenny’s yoga retreat which was focused on Yin. The session started off with setting our intention for what we wanted to get out of the retreat. I said I wanted to find peace and self forgiveness, I can’t always be there for everyone even though I may try. It’s too much for me to manage, I am resetting my boundaries and forgiving myself for the guilt at having to let some people down by gently saying no, I cannot be available for them. I can’t help anyone if I don’t also help myself. You can’t pour from an empty cup.

The first half of the day had been raining heavily and by the time our Yin retreat started the sky had cleared and we had sunshine which was a welcome sight from the studio which overlooks a park. I took this as a sign and a reminder to always look out for the sunshine after the rain.

We spent some time on fascia release and a facial massage which really helped to relieve tension. I had some really sore spots which I wasn’t aware of and will definitely pay attention to them going forward. Our bodies store so much, it’s really important we look after ourselves.

One of my favourite parts of Jenny’s Yin classes is the guided meditation. She asked us to repeat an affirmation “I am” and to find one word to finish the sentence. I also love the music she plays. Everyone who knows me is aware of my music obsession! It inspires me, motivates me, makes me happy and also makes me sad. Most importantly, music also heals me, and when it’s combined with Jenny’s affirmations during her class it’s deeply powerful. I felt the energy of my dad and my grandmas in the studio with me, they were letting me know they are always there with me even though their physical bodies departed many years ago. I cried, and also felt their love surrounding me and the beautiful peaceful and positive energy of everyone else in the studio. This is the magical power of love, don’t ever underestimate it.

That afternoon we had a cacao ceremony which was also very special. This doesn’t mean we were sitting around chatting whilst eating bars of Dairy Milk! A cacao ceremony begins from the way it’s grown, harvested, prepared and consumed. It has medicinal purposes and when sipped slowly with our intention, it also feels very powerful and gentle at the same time.

Our afternoon finished off with Yin yoga, by this point I felt as if I had been reborn, I was so chilled. The tears appeared again, they were tears of joy that I was able to experience such an incredible afternoon with one of my best friends and with Jenny and like minded people who are all on their own journeys of discovery, to learn more about who we are and to be the best version of ourselves. To be kind, compassionate and empathetic in what can often be a cruel world, we need to balance that with love and understanding. We must always fight the good fight.

Thank you Jenny for an amazing afternoon, for guiding us and being so encouraging. You are a special soul, an earth angel.

I will finish off my blog by letting you know what my affirmation was;

I Am Me

R LeBall 6/11/2022

Namaste.

If you would like to find out more about Jenny’s Yin classes you can find her on Instagram – Movement with Jenny

Dementia – Living Grief

The memories that we hold of our parents are deeply embedded in our minds, body and soul. 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.