Knock Knock.. Who’s there? Huntington’s Disease. It’s time to grow up, you’re a carer now…

One day I’m sneaking out of my friend’s with her to meet boys and drink WKD (Yes I really was quite a rebellious teen, and yes this was you Gina)… the next day I’m dealing with the devastating news that my Mum has an incurable, degenerative condition called Huntington’s Disease. A disease that could also be my Sister’s or my fate. And it’s back to school tomorrow, and for my science lesson on genetics, where inevitably they discuss the passing of Huntington’s Disease. Is that called ‘sod’s law’?

I must be about 5 years old year, Kelly 9. Dad trying to teach me karate, me just wanting to play with our dog (standard).

I turn 30 in November this year, and I feel like I’m getting a PHD from the University of Life. I’m stuck on a really shit rollercoaster, in a theme park I didn’t want to go to, and can’t escape. The weather keeps changing, one minute the rollercoaster stops and the sun is out, the next minute I’m hurled upside down and the rain is smashing down on me and hail is smacking me in the head every time I put my head up. That’s the unpredictability of HD.

my Ex brother in law’s 30th birthday party, I was around 19 years old

It’s fair to say I have always felt a protective instinct towards my Mum. Call it intuition, or being an empath, or perhaps my parents couldn’t hide it as well as they thought, but I always saw she was vulnerable. But never did I think I would be doing the role I am doing today.

Terranova house hold tradition – putting the Xmas decs up with Cliff Richard on!

The minute we knew about HD it changed my relationship with Mum forever. I missed out, and still do miss out, on a lot of things that a normal teenager or young woman would have from their Mum. For what it is worth, before HD wrapped its tail around her, she was the best Mum in the world. Funny, kind, generous, and warm. She loved nothing more than spending time with me and Kelly.

Xmas drinks at our local pub many years ago!

I can’t imagine how she felt when they broke the news, as I know she wanted to support us and for us to talk about it, but I wanted her to believe I was dealing with it OK (which I definitely was not). So, I shut her out, told her I was fine, and went through the normal teenager turmoil but kept a lot from her. I developed major issues of my own, but was too confused and stubborn to let her in. I didn’t like anyone seeing me vulnerable.

Mum and me August 2017. Mum was desperate to be around me all day on my wedding day. She loved being part of it.

If I had a rewind button, I would talk to her so much. I would cry, let her hug me and let her be my Mum. I took that away from her when she was still well, and I really feel like I wasted precious time where I could have got to know her better as a teenager becoming an adult. Unfortunately her symptoms began to change the Mum we knew fairly soon after, and my role as a daughter changed over a matter of weeks to carer. Even at 15/16 I recall sitting with her after a psychotic outburst and reassuring her it would be OK.

Don’t get me wrong, we have always been close, and made some great memories once I grew out of the rebellious age at about 18, but it was up and down adapting to the bad days. It is a very unpredictable disease even in the early stages. After we had the news there was probably a good three years of me rebelling, being out until 3am, not talking, and all that time she wanted to talk to me.

Even at 18 when I matured a lot, I still protected her and didn’t let her in, I couldn’t make her pain any worse by letting her know what I was going through. The reality is, she was the most selfless woman and would have only wanted to help.

April 2010, my cousin Lauren’s wedding.

When the mood swings started, there were constant unpredictable and instant mood changes which would see my Mum swearing at me or Kel, which was completely out of character. Perhaps even a pan launched across the kitchen at our heads too (my sister will chuckle at this, as one time, she scooped a mouthful of delicious pasta pesto into her mouth as we watched a pan fly across and swipe her bowl away straight into the wall… we were so shocked we actually laughed, a weird but wonderful coping mechanism we have always had).

My sister’s surprise engagement party, August 2010. This was the last time I remember Mum getting herself ready and dolled up. She rapidly declined months after this.

Tonight, my Saturday night off shift work, I lay with Mum in her bed holding her hand, until she stopped crying and pleading with me asking ‘what time is tea’. She has probably said this in the region of 70 times since this afternoon alone and it’s 11pm. She has had more food than a herd of rhinos. She has spent the day severely distressed, with no normal tactics helping and no medication calming her down. It has been very distressing to see her like this and not be able to help.

Summer 2019

Things are declining rather quickly now, and communication can be limited to nothing at times with this phrase often being what comes out. I lie here and wonder how the hell we will cope if we have another week like this now, or what we will do if it worsens again? I lie here and contemplate on how much my life has changed, and my parent’s life, and I grieve for the life it could have been. I lie here and hold Mum’s hand so tight, and pray that she will tire herself out soon and go to sleep, so I know she is comfortable. This disease makes people suffer so so much.

Being a carer is so much more than preparing meals and getting someone dressed, doing the shopping, or taking someone to the toilet. Plans can’t always be made in advance, or plans may have to be cancelled. For my Dad, his life has almost reversed back to when he had young children and couldn’t go out when he wanted.

“I’ll have to see what care I have available and get back to you mate”

 “I have no carers on a Friday morning I can’t do anything until 12:30 sorry”

“I best get back as the carer finishes at 9”

 “It is probably best to pop over in the afternoon as Jenny can be agitated before lunch and in the evening, I’ll be busy putting her to bed and sorting the house for tomorrow”

 These are all sentences I hear weekly. I hear the worry in my Dad’s voice if a carer is unwell or the rota is changed, he knows he has no choice but to do the care himself unless me or my sister are off work and he knows it exhausts him, but he also feels terrible asking us to help.

He is trapped and restricted at 61 years old after spending his younger years travelling across the world most months, working day and night to give him the financial security he has today. He worked his younger years and is now working the hardest job yet. There is no retirement in sight yet. He has had to learn new skills he never had to do when Mum ran the house. He’s a housewife, breadwinner, carer, cleaner, accountant for himself and Mum.

As the medic in the family and often the practical diplomat, I take on the role of several characters too. I’m a social worker, a district nurse, a paramedic, a care leader, care coordinator, the trainer for new carers, the carer liaison when changes occur, the admin for Mum’s PA’s documentation, the pharmacist when we need new medication ideas. The list goes on. I also have the addition of keeping tabs on Dad with my Sister, since his mental and physical health took a huge hit in 2016/2017 when we were grossly failed by a multitude of services and professionals that I won’t name.  

Mum, me and Rosa doting on my nephew Freddie

I’m also a full-time healthcare professional in a fairly high pressured job (nee naw worker) coordinating 12 hour shifts around an ever growing up 4 year old daughter. I’m a wife and a Mum, and certainly not able to fulfil those roles as best as I would like to. One thing that is for sure, if that I am rarely able to be just a daughter.

The responsibility is huge, and I can’t say for all illnesses, but I can CERTAINLY say for Huntington’s Disease, is that nationally, there is no accountability, no protocol, no guideline, no advice on what to do when things change (for families or healthcare professionals). The Huntington’s Disease Association have incredible advisors, but they’re stretched beyond belief helping so many people with the same challenges. No where to turn. The GP isn’t sure where to refer to, the neurologist case load is so huge we have to phone he secretary and await a letter in the post. There is no telephone advice, no specialist nurse. Fortunately my job has given me the perfect tools to deal with pretty much any situation, so we tend to get by.

Mum and me, enjoying a Queen tribute band July 2019

Being a carer is lonely, isolating, and a significant reason for why many cannot grieve for their loved ones even when they pass. They’re used to just carrying on, trooping through, and blocking out the trauma.

For me, I love nothing more than looking after my family, but the responsibility is overwhelming at times. We hit crisis this weekend and there was no where to turn. Hospital wasn’t an option as they wouldn’t have the staff capacity to provide the 1-1 care needed, and the routine disruption would cause even more havoc. Mum is also so terrified and anxious, it would have an awful impact on her, so again, we’re trapped and have no choice but to take a breath and ride the rollercoaster.

The transition from daughter to carer, husband to carer, wife to carer, friend to carer, parent to carer. Whatever the transition, unless you’ve experienced it, it is difficult to explain the emotional impact it has.

Cotswold Water Park, August 2017

A few shifts ago I met a gentleman who had an acquired brain injury after suffering a huge stroke in his early fifties. His wife was so gorgeous with how loving she was with him. She talked about their relationship before and how they never separated other than for work, about how successful he was in his job. About what they had to live for, and about how lonely she feels at work, and that she is purposely excluded from things, but sent “thinking of you” texts once news was out an ambulance had come. She tried to hold back tears but cried from the anxiety and fear that hit her when her husband had a seizure and she needed an ambulance.

It was so clear the grief and pain she was going through, I could relate to it so badly, and knew nothing could heal her pain. She was trying manage work to pay for her mortgage, have some time for herself, and still be the devoted wife she wanted to be. The things we go through as carers, the trauma, it just gets locked away in a box to allow you to cope with what needs to be done. But eventually that box will fly open, it’s inevitable. You just have to hope and pray it isn’t at a time when you’re needed.

If you know someone that’s a carer, no matter how many times they change plans, cancel, rearrange, let them know you’re listening. It is a lonely and exhausting place, and sometimes normality is just what is needed.

The card at the top was given to me by my Mum when I was about 15. I remember putting it away and being too stubborn to talk to her. It is so painful to read it knowing I missed out on that chance to know who she really was. For all those daughters lucky enough to still have their Mum alive and well, take her for a cake and tell her you love her. Tell her all your problems and boy troubles, buy her flowers when she’s down and make memories together.

I know my journey as a carer hasn’t even got to the toughest part yet, but as all carers do, you adapt and overcome. This last week has bought new challenges, but already we have adapted and are ready to fight the beast that is HD and get it’s claws out of Mum.

If you’ve read to my waffle for this long, THANK YOU! Em x

38 thoughts on “Knock Knock.. Who’s there? Huntington’s Disease. It’s time to grow up, you’re a carer now…”

  1. You are an amazing person. No one would know that you have all this going on in your life. Every time I read your blog it brings a tear to my eye. Maybe a little out if sadness at the situation you and your family are in, but actually more in massive admiration for your courage, resilliance, strength and down right stubbornness that is allowing you to fight every single step of the way.

    1. Thanks so much Ellie. And thank you for taking the time to read it. I find writing about it a good way to get it out there and raise awareness and reality of the situation many people are facing xx

    2. Phew. It’s a bit dusty in here, isn’t it? 😢

      I’m a little stumped as to what to say here, other than to convey my jaw-dropping admiration of you for everything you take on and cope with. I’m truly in awe of your capacity – it’s as if you have a bottomless well for kindness. Thank you for your very honest and insightful account of being a carer (and daughter, mother, career woman, etc…). Much love to you and all your family! Xx

    3. Very honest and absolutely spot on. No-one realises what it’s like to be a carer and especially with the unpredictability of HD. It is known as ” the mother of all diseases” not wrong. Thank you for sharing. It’s a great blog

      1. Thank you so much Lynne. I think all disease are horrendous, I just think HD attacks every single part of a human down to their personality and emotional responses. It’s brutal at every single stage from day 1 of symptoms. Lots of love xx

    4. I absolutely applaude this moving and honest account of what you are dealing with. Thank you for shouting out about HD as until last year i had never heard of it. My daughters 25yr old best friend, tested positive for HD when she was only 18. She only told her because her father has retired early as his symptoms are now becoming more prevalent. Im scared for what lies ahead for her and I pray that research finds a cure.

      1. Gosh that is so so young. For what it’s worth the research at the moment is incredible. I am so confident there will be a cure in the next 10 years!

  2. You capture this perfectly. The heart breaking responsibility, sadness and love. Caring is so emotionally demanding. And the goal posts just keep movong… I do know that she would be so bloody proud of you though. And you’re right; people/friends should reach out and support carers. It’s sad how many people look away or are simply too busy to pick up the phone, give a hug or share a bottle. it would make a world of difference. Love to you all x

  3. Wow, this was the most relatable read yet. Especially for my dad… HD is such a tough journey for everyone involved with more emotions than you can even put into words, I wish there was more help available as like you say, it’s so isolating and scary. Everyday is the unknown and a battle, especially for the sufferer.
    You and your family really are doing an incredible job and making changes as much as you can but most importantly being there for your mum every step of the way which is invaluable.
    Keep doing what you are doing because you are making a huge impact and raising so much awareness for this cruel disease. Much love to you all as always and big hugs to your mum and dad xxx

    1. Thank you so much Sophie. I really hope we are making an impact and there are so many more projects in the future once we have the time to finish them. Love to you all stay strong xxx

  4. Dear Emma I’ve read this twice, to let the enormity of your tasks sink in. I thank you for being a wife, mother and daughter in law. I wish we could wave a magic wand for you all but sadly not. Our help is always here for you. Withlovexxxx

  5. You all do a wonderful job looking after your mum … it’s so hard seeing one of the most important people in your world change, be there but not being there, but in my experience I find it more heartbreaking watching my mum . My dads carer. They married at 17, became parents at 20 and it was just the 4 of us against the world…. mum and dad worked hard for their little family , with one eye on when it was just the 2 of them again and all the fun they would have …. ripped away from them both . At 65 her best friend has changed beyond recognition, all her dreams shattered and she’s lonely. It’s just heartbreaking x

    1. It’s so utterly heart breaking isn’t it. It’s not what you imagine when you get married and I think the loneliness of a husband or wife carer is hugely misunderstood. When the Carers leave my dad has no one to converse with but still desperately tries to communicant with mum to make her feel at ease. He goes to parties by himself, even though he has a wife. It’s tragic. Love to you and your mum she sounds wonderful xxx

  6. I’m in floods of tears over my coffee, amazed by your courage and determination, so sad for all you are missing out on, and so angry with you at the lack of support and help. Beautifully written piece. Your parents must be so proud xx

    1. Thank you Caroline. I know my Dad is and if my Mum could express it I know she would be too! Xxx

  7. I was directed here from Kelly’s story. Wow. I know things are difficult but it isn’t until you read something so powerful like this that you actually try to understand how much it impacts daily on everyone. Hats off to you all. You are all an inspiration
    Xxx
    Emma x

    P.s I’ve just text my mum to tell her I love her and ordered flowers to be sent to her!

    1. Awww well look at that for a domino egg effect! I hope she loves her flowers. Thank you so much for taking your time to read and comment xxxx

  8. Thank you Em,
    Such an emotional heartbreaking blog, made me well up.
    I think most families dealing with a loved one who has HD feels the same, especially as their carer!
    The NHS and social care are very stretched with limited specialist funding available and of course the postcode lottery plays a part. My mother-in-law died of HD in an old people’s nursing home, I doubt any of her carers were properly educated about HD. But this is the reality of what happens, it’s so very sad.
    But hopefully in the very near future they will have a cure for this very cruel disease xxx I pray for this
    Debs

  9. wow… that was hard reading but thank you for the most honest insight to your life living in this situation… I have no words to express how heart wrenching it must be, only that you are the strongest family, thank you for writing this and sharing your experiences… x

    1. Thank you so much for taking the time to read and comment today. It mean a lot to have the support! Xxx

  10. Oh Em, as both a mother and a daughter and someone who knew your mum before HD got a hold this post moved me to tears. Please don’t blame yourself for ‘protecting her’ or not talking to her when you were younger. At the time you had lots of hormones to deal with, changing brain psychology and I daresay you were dealing with things in the best way you could at the time. That’s all any of us can do – at any age.
    I’ve not been round much because I just assumed that you would have many closer friends and supporters around you and I didn’t want to crowd you and the family when you have enough to deal with. But, reading this made me think. If you need anything at all doing – ironing, gardening or even just ‘normal’ company, just PM me. I have the car Thursdays, Fridays and weekends and can come over at any time then. Your dad helped me a lot when I was going through a bad time and if I can do anything to help him, then please let me know. I know you’re not a huggy person but I’m sending cyber hugs to you all anyway xx

    1. Thank you so much Jules. So kind! I may take you up on that some time. Even if it’s just w cuppa! Lots of love and as always thanks for your support xxx

  11. Wow… Amazingly put & straight from the heart.
    A ‘no holes bar’ view on what life as a carer is…
    Thank you

  12. I joined instagram one night on a whim having rode the very same rollercoaster that day that you describe. There I was scrolling through pictures of other peoples living rooms (nosy and love interiors, instagram was made for me!) and the odd motivational quote (Lord knows I need all the motivation I can get!) when I came across firstly your sister and then yourself. Here were two ordinary women going through pretty much the same thing my sister and I are going through, it was a proper “oh my goodness” moment. My dad was diagnosed with a brain tumour in 2006, we thought that was the worst thing that could happen to our family, we were wrong, in 2016 he was diagnosed with Huntington’s. I don’t need to explain the emotional ups and downs we’ve experienced everyday since then, you’ve described them yourself so eloquently in this blog post, you’ve lived them and are still living them yourself and as a family. I just want to say thank you for sharing your experience, it may (or may not!) be of some comfort to know that reading your blogs and watching your stories has helped me get through some of the many (and boy have there been many recently!) down moments on that rollercoaster. Hats off to you all as a family and love to your warrior mum xx

    1. Hearing messages like this are what makes this whole venture so worth it! It is so heart warming to hear we are actually making an impact. I hope you feel less lonely in your fight xxx

  13. Wow this is so very emotional to read this Emma. I can’t even imagine the the enormity of tasks and roles you take on to support your mum and your family, but thank you for sharing. You’re truly inspirational and I’m in awe of your resilience and determination to share your story and shed light and awareness about HD to help others.

    You are all amazing.

    Sending love, Laura xxx

    1. Thanks so much for such kind words bad taking your time to read it. It means a lot! Have to keep fighting xxx

  14. So spot on. I lost my uncle, two aunts and mum to HD (I’m now 32) – it was part of my identity growing up. My whole life was about being a carer as a child, and now Ive reached my thirties having spent my adolescence caring and people don’t understand why I want to take a breath and don’t want children. I grew up in fear my family members would have another bad fall and it would be their last, or that their mental health would deteriorate again and they would try to end their lives. Both my auntie and mum tried on at least two occasions. I rebelled for 3 years after my mum died, always out the house away from my nan who I knew wasnt going to be around much longer either (who I was then a carer for too). I wanted to scream and run away from it all, and not live in constant fear of losing people. It is THE most challenging and heartbreaking disease to go through, as a child, lover and parent. You and your family are giving so much strength to people just with sharing alone xx

    1. Gosh you have really really been through it and I relate totally. I get weird looks all the time about why baby number two isn’t here yet. Truth is I am not ready! Lots of love and strength to you xxxx

  15. Thankyou for sharing this with us Emma xx
    I cried reading your beautiful words. You and Kelly are such amazing daughters and your mum is so lucky to have you both caring for her and your dad too xx
    It sounds so cliche but I can’t imagine what you go through daily, must be incredibly tough. Hope you look after yourself too.
    Lots of love xxx

  16. Hey Em, I must have got some grit in my eyes whilst out in the garden today! Again so many parallels in our lives. Another great powerful piece, a true insight into our very fragile lives. I for one know what a positive impact you make on peoples lives. Stay strong.

    1. Thank you Ade, it means the world to know that there is an impact made. I am so happy we have met and look forward to a long awaited catch up! Xx

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