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