When my Mum was first diagnosed as terminally ill, I didn’t know anybody who had been through anything similar. Even now, I know very few, but unfortunately, I have a couple of friends whose Mums have recently been diagnosed as terminally ill. Even though my Mum died less than a year ago, I still feel like I’m not sure of the right thing to do or say, but here’s a stab at getting some words written down.
Dear friend,
I know you’re scared. Whether the terminal diagnosis was a few months ago and your Mum is doing relatively well, whether it was a few weeks ago and it’s looking like this week might be her last, or whether it’s somewhere in between, I know you’re scared. You don’t know what’s going to happen with this illness. You don’t know how long you’ve got left with your Mum. You have never lived a life without your Mum, so you can’t imagine what that might be like. It’s impossible. And while all of this is going on, while your entire world is crumbling and you want to scream and shout and tell everyone you see that your Mum is dying and it’s not fair, everyone else somehow carries on as normal.
First and foremost, a terminal diagnosis is crap. There are no two ways about it. Some people will try to tell you that it will enlighten you in some way, others will tell you that your Mum has “had a good life”, many people will try to find a good or a meaning out of the bad that is a terminal diagnosis. This might be helpful for you, I don’t know, but I know that I found it incredibly frustrating and it made me feel guilty for not feeling good about anything much at all. One day a friend turned to me and said: “it’s crap, isn’t it? It’s just crap”. I found that incredibly liberating because it is crap. Your Mum being terminally ill is crap. Your Mum dying is crap. And it’s absolutely okay to feel that way.
Take selfies. Go to cafés. Go on walks. Sit and watch TV together. Just spend time with each other. They’re memories you will treasure. All of your life you’ve been making memories with your Mum, but in making those memories, it’s unlikely to have ever entered your mind that your Mum might not be there to make more memories with in future. Now you know, though, so spend time with your Mum if you can.
You might have lots of visitors – don’t be afraid to ask people to leave. Having people around is lovely. Seeing people you’ve not seen in ages is great. Giving people the chance to see your Mum is a wonderful thing to do… but you’re their child. You (and your immediate family) are your Mum’s closest family members. You get first dibs. Allow yourself some time as a family, and if you want it, allow yourself some time alone with your Mum, just you and her.
Your Mum is going to change in front of your eyes. Sometimes in ways you might expect – perhaps she will lose her hair, or gain a new scar – but she will change in ways you won’t expect, too. She will look smaller than you’ve ever seen her, sleep for more hours than she’s awake, perhaps her skin will change colour. It’s horrible, it will make you cry and you might not want to cry in front of her – but it is okay to do so if you do want to. She knows she’s changing, she knows it’s horrible, she’s your Mum – let her give you a hug.
There will be emotions you can’t name. That doesn’t mean that it’s wrong to feel them. There are no right or wrong ways to feel, there are just feelings. Emotions are scary and can hurt, but even the most intense, most painful emotion will subside eventually. (Though eventually can feel like a very long time).
There will be nights when it feels like morning will never come. There will be nights when you don’t want morning to come because you’ve finally got through another day and you’re not sure you can do it all again tomorrow. You can do this, though. I can’t tell you how you do it, but you do. You get up again the next morning and you put a smile on your face, you cry in the bathroom, you drink a cup of tea, and you get on with your day.
You don’t have to have everything figured out. You don’t need to ask your Mum anything and everything you might ever want to ask her. People kept saying to me that I had time to ‘prepare’ and that I should ask my Mum everything I might ever want to know from her. I hardly knew what I would want to ask her an hour later, never mind a year or ten years later. I don’t know whether, when trying on a wedding dress, my first question will be “does my bum look big in this”, or “does this make me look ridiculously pale”. It’s too stressful to try and think of everything you might ever want to know – there’s no way to predict the future. You might have some things you know you will want your Mum’s help with (I asked my Mum for general wedding dress advice), but you really don’t have to have everything figured out – nobody does.
You will find strength you never knew you had. Strength within yourself, strength within your friendships and strength within your family. You may lose friends, especially if you’re young when your Mum is dying because people get scared and they stop calling. But you will gain friends, too, and you will realise that some friends who you haven’t spoken to in years, are the best friends you could ever ask for.
Your faith will be shaken. Whether it is faith in a higher power, in nature, in science, in people, or simply in good, it will be shaken because there is no rhyme or reason as to why this is happening. Eventually you will find faith in the little things again; in the warmth of a cup of tea, the squishiness of a hug, the sun illuminating the orange of the leaves, or something completely different.
Do whatever you need to do. There is no rule book for this, no guide. If you want to go back to work then do it. If you want to move back to your family home, then do so. If you want to do a charity skydive, a head shave, or a fun run, then do it, celebrate it, get all of your friends and family involved. If you don’t, and you just want to sit, watch TV and get emotionally invested in fictional characters, then that is absolutely okay too.
Please remember that you are not alone. There are friends and family who are right there alongside you, but if you feel like you need help from elsewhere, there are charities like Marie Curie, Hope Support (for young people), and Carers Trust who have helplines, forums, and online chats. It’s also perfectly okay to book a GP appointment and talk things over.
I promise you that whatever you’re doing, you are doing okay. You’re living life trapped in a nightmare, but you’re still breathing in and out, still checking in on friends, cooking the occasional meal and drinking copious cups of tea. You might not think you’re doing ‘well enough’, but I promise you that you are doing just fine.
Take a deep breath, you’ve got this, and if you ever feel like you haven’t, I’m only a text away.
Lots of love,
Your friend (who doesn’t know exactly what it’s like for you but has been through something similar).
Naomi Jane 
Youth is an enemy when faced with your mom’s inevitable death. I was thirty-two waiting with my mom for the test results. I wasn’t concerned, mom was never I’ll and she was 54; mom’s don’t die in their fifties. But, thirteen weeks later, the day after mother’s day, she was gone. Twenty-five years later I now have outlived her by two years and realize how tragic her mortality was. The questions I now have never occurred to me at thirty-two. I apologise often for not fully grasping the effect her death would have on my life. If only our relationship hadn’t been such that a hug wasn’t to be considered by a daughter still holding her to blame for my unhappiness. “I didn’t think I’d miss her like I do and I would have said those words I couldn’t if I knew. So I whisper, I whisper though she’s gone, I whisper, I whisper I love you mom.”
I’m so sorry to hear about your Mum. It really is such a young age. I hope you’re doing okay now X
Naomi, I am sorry for the delay in sounding back. IPresently, I am working on a photo of my mom taking a nap on the count with my two-year-old son, It’s the last photo takne weeks before…When I think back on how stoic she was, fearless, resolved almost wanting to go. It’s futile to try to put a puzzel together when the peices are 26 years old, twisted and bent over time.
It sounds like a lovely photo. My Mum was so incredibly brave, too. I hope you’re okay x
Your words are pure and powerful.
Living with HD (Huntington’s Disease) is hard. I know I’m only 23 years old, but the majority of my life consists of a battle between depression, anxiety, and reality.
I knew that I was going to test positive. In some ways it was a relief because I had an explanation for my bouts of insanity. In more ways, it was a nightmare. A nightmare that lived and breathed through me and my family.
My mother is my life, and watching her turn into someone I don’t know causes me to have a mental breakdown at least once a day…on top of an overload of classes at a university that curses me with a financial responsibility I don’t know I will be able to carry through.
It’s hard to get out of bed. The worst kind of sickness is a disease that consumes your mind. So you might have regular mental illnesses, and then you have mental illnesses caused by HD, and then you have to carry the burden of being a caretaker, finishing school, and becoming sick yourself. Not to mention the fear of never finding a husband who wants to deal with your degradation; and even if you were to find someone, you would have to carry the guilt of handing him the responsibility of taking care of you.
And what about kids? I’ll be 24 in two weeks, and I was always sure that I’d be married with kids by now. But to ensure that they are healthy costs more money than the debt I’ve surrendered to in exchange for an education. I’m only growing older.
Time is my greatest enemy. You can’t fight him. There is no winning. And the worst part is, people attempt to provide comfort in the phrase, “It’s all in your head.”
I can’t imagine feeling worse. I can’t imagine being taken care of. I had a dream that I was in the later stages, and it was horrible. I couldn’t even tell my dad “I love you.” I couldn’t stop moving. There was no rest. And I am petrified.
The only comfort I find is in my HD community. I find solace in reading other people’s stories and knowing that I’m not alone. I love all of you more than you can imagine because we are the same. We understand each other, and empathy is HD’s greatest reward. It has given me a family.
So please, share your story. It will give strength and hope to others who are suffering…people like me. I urge you to let your voice be heard. I’m tired of being silent, and I know you are too. Speak for those who are too afraid. We are a family.
http://capturingthecorners.com/tell-your-story/
I’m so sorry to hear about your Mum adn your illness. It can’t be easy, at all. Thank you for sharing so openly and honestly. Thank you for sharing the link, I’ll check it out Xxx