caregivers
survival
guide
During the ten months caring for Stu I learnt how to cope mostly by trial and error but found some basic strategies that helped me get through each day.
That cold night in January driving home having to leave Stu in the hospital alone due to covid was the beginning of my fulltime carer role. Stu was put on a high dose of steroids while we waited for more news about what was to come next. It was the most challenging, yet weirdly intimate and beautiful time of my life. We got engaged as soon as Stu was discharged and then married under a week later after being granted a special licence because of covid lockdown rules with just four members of our now combined family present.
My role of caregiver crept up on me suddenly one Friday morning when we realised that my then boyfriend of 8 months needed to be seen by a doctor for symptoms such as confusion, headaches, difficulty word finding and memory loss. He had been seeking a doctor’s appointment for a week thinking that his headaches and bumping into walls was a symptom of stress brought on by a busy and demanding job and his father being ill in a different country and not once did it occur to me or him that it could be a brain tumour. At that time we knew very little about brain cancer.
When you find yourself suddenly thrust into a job you didn’t apply for, weren’t expecting and don’t have the training for, it can be a very scary, lonely and intense time.
For millions of people across the world this is the reality of caring for your loved one and it’s not really widely talked about by my peers because it’s not exactly typical to get ill so young. Don’t get me wrong I always saw it as an absolute privilege to be the one to stand alongside my husband after he was diagnosed with brain cancer but it was HARD.
learn how to control your thoughts
1.
I can be my own worst enemy and I had to constantly remind myself not to believe everything I thought. My imagination is both wild and rebellious, so this was quite a handful at times. Negative thoughts and overwhelming emotions could flare up at any time, undermining my heartfelt intentions to be my best self for my new husband. Sadness, anxiety, research exhaustion, and intrusive thoughts that threaten your hopefulness have the ability to spiral out of control if you’re not vigilant. There were a few occasions that I was so overwhelmed I ended up crying on the floor. I now look back at those raw moments and whilst I know they are totally natural I wish I had not completely lost it in front of Stu.
2.
Some might say that if you're not the one with cancer what are you complaining about, but I would say that those people haven’t walked in these shoes so I’m not going to let them tell me how to tie my laces. There seemed little point to me to bury my feelings. Stu and I were open with each other; we wore our hearts on our sleeves right from the start. We were transparent to each other because our bond was impossible to hide things however looking back, I wonder whether being so open was good for him.
Every evening we would talk about what we were grateful for, what good things had happened that day and how we could improve the following day. Being a cancer patient and being a caregiver is exhausting and relentless. Our priority being to remain hopeful and know when we needed to pivot.
It can feel incredibly lonely and like you aren’t doing what you deep down really want to do which is save your loved ones life. It’s impossible to be on top form all day every day even with the best intentions. I used to lie awake in the middle of the night, examining what I had done that day and even months/years before and remembering every single one of my shortcomings with deep shame. I also knew that if the worst happened that I would torture myself for years to come. Wallowing in regret is a path I’ve trodden many times. Forgive yourself at the end of every day and remind yourself of the good things you are doing to ease the shit time your loved one is having. What you are doing is incredible and you deserve to feel appreciated and proud.
acknowledge everything you are going through and forgive yourself
3.
Ok so not all surprises can be anticipated but if this path is well trodden by others there will be avenues that will lead you to support. We didn’t need to access palliative care teams because Stu died suddenly and not in the way one might expect but I had a list of agencies and charities that would be able to assist if we needed them. Just having some kind of contingency plan was helpful so that if the shit hits the fan you know which direction to go in.
Keep a note of everything you are doing, taking, researching. I built a spreadsheet with all of the information. Names of meds / supplements, dosages, the reason for taking it, were there any interactions, recommended/prescribed by which doctor, notes from each doctor, expiry dates, costs, where to purchase from. You never know when you might need this information but in particular I sent the spreadsheet to all of Stus medical team for sign off.
pivot and plan for surprises
4.
The fear and anxiety that surround a cancer diagnosis and the uncertain future can take over. Feeling like I had no idea what might happen next or how our future would look was crippling at times but in order to gain back some resemblance of control I had to get organised.
As I mentioned above, I built a spreadsheet for every single medicine and supplement that Stu took with information and reasons why each one was important, times, dosages, instructions etc. Everything was checked with his medical team so that the responsibility was not all on my shoulders. That way if something happened to me someone else would be able to relatively seamlessly take over.
We also went through all of Stu’s paperwork together. Due to the position of his tumour he wasn’t able to read and write, plus remembering things like passwords and insurance details was tricky. We made lists, sorted passwords, including adding my thumb to be able to open his phone if needed. Vital information like mortgage, bills, insurance policies and email passwords are easier to sort at the beginning than if/when things get even harder. I’m aware it’s not always easy to grant an all access to pass to someone but in these circumstances, there was a level of trust that we needed to carve a path with each other. We also arranged a Will for Stu. Whilst I wasn't directly involved in what was included in the Will I helped him organise the appointment with the solicitor. It was quite an expensive process and we have since found out that the Brain Tumour Research charity offer a free Will writings service. You can find the details here. And a free Will writing service is also available on the Macmillan website.
Having a plan did wonders for both of our mental health’s. Knowing that we had a plan even if it we might deviate from it or scraped entirely at some point meant that we could relax a little into the everyday tasks rather than screaming inside about a possible future without Stu and the financial stresses that were compounding that. Delve into both your finances and learn exactly what your assets are and how to access them. Find out whether there are any benefits your person can access through their work and also the government which can alleviate pressure. Maggies charity were hugely helpful with this. Work out which issue is causing you anxiety, research and come up with a plan of how you will be able to deal with it if the need arises.
get yourself organised
5.
I lost almost two stone rapidly because I was so intent on looking after Stu’s needs, I neglected my own often skipping meals because there was always another job to get done and quite honestly my appetite was lacking from the anxiety. I went full on nurse/diy oncologist/chief researcher Esther mode. It was ridiculous and wasn’t going to be sustainable. I barely washed my hair and as the months went on only left the house if someone was with Stu. I needed to regain control in some way so every morning when I woke up early, I would lie next to Stu listening to him breathing and do breathing exercises myself to try to start the day off calm.
It’s essential for your mental health that you find whatever works for you, and once you find something that works try to create a routine even if just for short bursts so you can find moments of calm as you face the days challenges.
This will sound basic but eat healthy, take probiotics, stay hydrated (not with wine), control sugar intake and try to do some form of exercise a day. That helped me stay sane and keep a healthy and hopeful mindset.
I had counselling and we went to acupuncture together. Writing also became my therapy. I was always scribbling something in my notes. It was my escape and to get my feelings out of my head and into some kind of order. If someone were to look through my notes, I wonder what they would make of it.
There were so many balls to juggle as well as the guilty feeling if I ever needed to go and do something for myself. I’m aware that I sound woe is me, but I was convinced that if I left for any more than a couple of hours and for something that wasn’t essential something would happen to Stu plus he always asked where I was going and how long until I was back. That’s just not sustainable and I needed to start asking for and accepting help.
self care and force yourself to take time out
6.
Get comfortable asking for help. Even with small jobs. Trust me, everyone wants to contribute in a meaningful way. And spread the load that way its more sustainable in the long run so you don’t have to depend on just a couple of people. I found delegation hard to begin with, especially if someone initially couldn’t do something because I felt embarrassed for asking but you soon know who will help you and then keep those people close. I found that my family dropped literally anything to help us out and many friends got stuck into fundraising and checking if there were things we needed. Not everyone knows what it’s like to tackle a cancer diagnosis or become a full time carer so they might not know what you need until you express it. It’s easy to let friendships slip because you’re up the wall with worry or so busy doing jobs but keeping in touch for lighthearted facetimes really helped up both especially when face to face was hard during covid.
Our friends and families carried us through the worst of times. It can be embarrassing to feel as if you are always on the receiving end, and only able to say thank you for people’s kindness. But it’s imperative that you know you are not entirely alone in dealing with your situation even if sometimes you feel like you are. I used to be a naturally private person on social media only really posting to wish someone a happy birthday and sporadic fun posts but as soon as we were open about our situation, we instantly felt uplifted and supported. Stu was particularly surprised at the outpouring of love because he had wrongly thought that no one would be bothered. People who are not involved with your daily struggle come up with wonderful insights, recommendations and advice, family and friends can listen to you cry and make you laugh or come to sit with your person when you need a little break, even friends of friends brought food so that was one less thing to think about.
Practice saying “yes,” whenever someone offers to help, and feel grateful without feeling guilty. Let people help you. For someone who is a fixer, help is tricky to accept. But accept it with open arms. If you’ve suddenly found yourself in this situation the chances are you have deep compassion for others in your situation and you will reciprocate when you can.
For months, and even now I feel guilty that I bought thank you cards to send to everyone who helped us with meals, fundraising, running errands but with everything going on I didn't get to send them and they are still in a pile in the drawer. I'm making an assumption here but people offer to help to take some of the burden and pressure off your plate, they aren't sitting at home wondering where their thank you card is or thinking you're ungrateful.
say yes to help
If you are on the front line of a brain tumour diagnosis then its not selfish to feel like its happening to you too. Illness like this effects everyone in the periphery too. Stu and I became closer than I ever imagined possible the minute he was diagnosed. We suddenly were able to cherish every moment and celebrate our love daily. I know from other carers that patients with brain tumours can have drastic personality changes. I noticed a couple of times with Stu but in reality, who is just going to breeze through an incurable cancer diagnosis without hitting the skids sometimes. We supported each other and us being open rather than protecting each other at all costs became our way of coping. We laughed. We cried. We were and still very much are a team. Pretty much everything I do still has Stu in mind and I feel like he’s here guiding me and helping me make decisions.
see yourself as a team
7.
With the drama we had with Stus company private medical insurance quite early on he pushed me to put private medical and life insurance in place. Typically within my social circle it seems to be the male who has this in place (if at all) but we knew that there was a high chance I would have to go it alone and we needed security in place for our future children. I cannot express how much it has helped both while Stu was alive and now that he is not that he had life insurance. It helped to pay the mortgage and not leave me homeless, provided a safe place for me and our future children and allowed me to stay in our home. It took quite a long time to feel like home again because Stu was my home but now I feel him there and I know how proud he was of it. I used a broker to get me the best deal with Scottish widows for my life insurance.
Write your wishes down. Whoever is left to take care of your estate deserve the peace of mind that comes with knowing that your last wishes are clear and not second guessing their decisions.
He planned his estate and will with his solicitor and whilst I knew the details, he nominated two friends to assist as executors so that not everything fell on my shoulders. That has been hugely helpful during a very distressing time. Stu and I had just a handful of conversations about what he would want for his funeral. It’s a very difficult discussion to have once one of you is very ill and we handled it with great care. I said that I would want to be cremated, some of my ashes sent up in a firework into the stars and the rest made into a diamond. He laughed, said of course you do, I’ll do the same. But because it wasn’t written in his Will I have to be careful and respectful of his families wishes too after-all they are the ones left behind. We were once visiting my Fathers grave and I know from our chats that day that he didn’t want his young widow to have to visit a graveyard. He said that if he could be anywhere he wouldn’t be hanging around there. But I’ve come to realise that there have to be exceptions and sometimes it’s the people left behind who have to live without their loved one that deserve peace in all this. My advice would be if you can, get it all in order so that its clear and concise. I’ve bought a book by Space Masks called The Little Book of Life Admin (formerly named The Death Book) so that my wishes and passwords can be found in there. Here is a link for your own The Little Book of Life Admin.
get your own shit together
8.
9.
I know its not exactly security conscious but get all the passwords in order. Early on after Stu was diagnosed we shared passwords and got on top of all admin but what if there had been something more sudden?
Its really helped both while Stu was poorly and since to have access to his phone, not to snoop around but so that I could help him with admin, pay bills and replying to messages. Accessing his laptop was harder but not impossible. Some things we just didn't anticipate but getting all the passwords in order to get admin sorted early on was definitely something I'm grateful that we did because my mind still isn't quite as sharp as it was before all this.
The admin involved if your person dies is also very tricky. You are suddenly thrust into this situation where you are grieving, trying to organise a fitting send off and having to transfer accounts, notify the right people about whats happened. The Tell Us Once government service helps with this and I've written about it in more detail in the Diary.
write down all the passwords
reframe your experience
What you are going through or have gone through makes up the rich tapestry of your life - we often think that our experiences are baggage - the word baggage seems to be thrown around by people who don't really understand other peoples experiences. Our "baggage" weighs heavy on us but what I've found is that yes, what I have experienced in my years has been heavy to carry but its also enriched my life and made me into someone who has compassion, wisdom and the wants to help others in any way I can.
Those moments that push you to your limits, often to breaking point inevitably give you strength that you never knew you had or even wanted.
Would I prefer to have not lost my husband to brain cancer - YES of course. Do I spend time each day wondering what life would be like now if he had never got ill? Abso-fucking-lutely. But I also know that living my life wishing it away without trying to help others would just make everything Stu went through seem pointless. Pretty much everything I do still involves Stu - this website, our IVF, Archie, anything I buy, lots of my thoughts - we are still so intertwined that most decisions I make are with him in mind. I see nothing wrong with that. And I feel that people who haven't gone through this kind of loss or experience are the ones who think our people should be left in the past so that everyone can move on.
It's not unhealthy to keep your loved one with you in every day life. Your experience will always be interesting to someone else who finds themselves in a similar position. The best advice I have been given has been from people who have trodden a similar path. Despite everything thats happened I feel like I won the lottery the day I met Stu - to be loved by him so completely is the best gift that he could ever have given me and I will be forever grateful for every minute with him, even the tough ones - BUT that doesn't mean there aren't times where I think this is all utterly shit and as grateful as I am I still sat WTF every day. Its important to remember that however you are feeling is ok.
10.
11.
Aside from finding your support crew through your friends, families and people who just show up even though they don't know you, there are organisations out there designed to support you in a way that others may not know how to.
From my perspective you can never have too much support and when others are busy you can find the support of people who have already trodden the path you are going down. This could be in the shape of a national charity that supports care givers or a bunch of likeminded people that you build through the lovely cancer community.
There are lots of great support groups on facebook. You can search GBM or Glioblastoma or whatever the name of the cancer is. I'm in so many support groups for other things such as fertility treatments. Maybe its the feeling that I'm not alone in feeling the way I do but its also the sharing of knowledge that is invaluable. We are living in the times where information is available at the click of a button but information overload can also be a problem if you don't have a sympathetic, forward thinking and open minded oncologist to keep things balanced.
By nature I have less confidence than I used to after everything thats happened but over the months I connected with a couple of other families going through the same thing, to start with it was to gain knowledge but then I realised that these people are our people. Aside from us sharing our knowledge they are just amazing people. We check in on each other and all of them are so willing to help others who find themselves in this shitshow. You can find the support groups on the facebook forum page of this website
What has happened since meeting all these wonderful people is we have built a foundation on which you can build a community that creates transformative change in the world - I mean you can't get better than that to start things off. We may have been brought together in extraordinarily tragic circumstances but we are all determined to make a difference. All stage 4 cancers need more. More support. More funding. More compassion. More research.
If you find yourself in this situation here are a few organisations that you can find support from
find your crew
Help, support and information for brain tumour carers
Help and information for lots if areas for carers. Including a range of help and advice for legal and financial matters of being a carer. You can search for nationwide support on this link
Discover ways to cope with the emotional and practical issues this raises, including how Maggie’s can support you
Useful information hub with support if you or someone you care about has been diagnosed with cancer
Being a carer can be a difficult and isolating experience but it can be a little easier if you’re aware of the support that may be available
They provide tailored. age-appropriate support, resources and community for the whole family
No matter how small and insignificant you might think those moments are, if you are faced with life without your person those moments will become more important than you could ever have imagined. I have a LOT of live photos of Stu and there still aren't enough. I wish we had years and years of photos, videos, moments and memories to look back on.
Take as many photos and videos as you can. Of even the seemingly insignificant moments. What I now miss the most about Stu isn't the big moments of going on holiday or things I imagined I would miss (though I do often feel like we missed out on so much) but its the way you can sit with your person just watching TV or just being without having forced conversation. There aren't many people you can do that with.
We had our beautiful friend and photographer capture our wedding and also Stu's 40th, the photos are so special and instantly transport me back to happier times. Due to covid both of those events were lower key than we would have planned which meant we don't have photos of both of our families together - something I wish we had been able to organise is a family photo shoot so we all have beautiful photos. I HIGHLY recommend Sheryl and you can find her details here.
capture the moments
12.
Your loved one may act different or have physical abilities that may be affected depending on the location of the tumour. For example Stu's tumour was in the left temporal and parietal lobe and the main differences I noticed were memory loss, occasional imbalance and spacial awareness, difficulties with understanding instructions and perception as well as difficulty reading and writing.
Damage to the brain presents differently depending on where the tumour is located so we put together a useful list below.
different locations
different changes
PARIETAL LOBE
TEMPORAL LOBE
FRONTAL LOBE
OCCIPITAL LOBE
CEREBELLUM
BRAIN STEM
Recognising people or objects
Movement co-ordination
Balance
Spacial awareness
Word finding
Writing
Reading
Numbness on the opposite side to the tumour
Understanding information from your 5 senses
Language and word finding
Categorising objects
Hearing loss
Memory loss
Seizures
Unidentified smells
Memory loss, language aphasia and hearing impairment
Seizures involving hallucinations involving vision
Loss of vision on one side
Loss of sleep, appetite and memory
Vomiting
Lack of dexterity (using your hands)
Walking/movement co-ordination and balance
Eye flickers
Communication skills
Controlling emotions and behaviour
Making decisions, solving problems, planning and organising
Loss of smell
Lack of inhibition
Understanding social situations
Weakness on the opposite side to the tumour
Lack of concentration
Mood
Facial weakness
Balance and co-ordination
Double vision
Communication
Swallowing
Blood pressure/heartbeat
It’s highly likely that you’ll have a whole host of people in the wings who want to help, but who are not quite sure how to offer that help in a way that’s actually useful. Or maybe there are those who are perhaps holding back for fear of getting it wrong.
I’ve put together this as a resource, based on our experience, that I hope will help those that love you to feel comfortable in offering assistance.
bearing in mind that this is a tricky path to navigate because you might say the wrong thing! Try to be specific and reliable.
for families, friends and those wanting to help
useful things to say
Would you like a visit?
Can I bring over some dinner? What are you able to eat?
Could you use a housekeeper-for-a-day? I can clean, do the laundry, make dinner.
Do you need someone to stay over while you recover from the chemo?
Would you be okay with me asking for prayers for your health at my church?
Are you doing okay? Do you want to talk about it?
Does (partners name) need anything? Can I help them in any way?
Would you like me to send a gift card for (Amazon, Uber eats, deliveroo)?
Are there any TV shows or movies that would be a nice distraction? I’m excellent at box sets!
Can I run any errands? I'm going to the supermarket I can pick up a few things if you text me a list.
Can I take you to lunch or out for some fresh air?
Do you have any doctor appointments this week you need a lift to? I can save you some driving.
Would you like me to walk and groom the dog / clean out the cat box? (Immune compromised people need to avoid this job)
Do you have someone to take you to your appointments? Would you like me to sit with you?
Which day do your bins get collected? I can be there every week to do that for you
I can stop by every morning this week to walk the dog before work - would that be ok?
I'm available to do virtual story time with your kids three times this week - which days are best for you?
good gifts to consider
your time and attention
laughter - nothing is better than being able to make someone laugh
if you are out somewhere - time and space to stop and rest or sleep at any point for as long as necessary
anything that eliminates chores and errands. meal delivery service like macro meals, grocery delivery, deliveroo or uber eats
thoughtful cards
movies, shows or music - an amazon gift card or you could pay their netflix for three months
chemo can leave a patient so out of it they should not be left alone. when I had to run errands one of our family would come and sit while stu rested in case he needed anything
warm throw, hoodie, soft scarf, blanket, dressing gown, pillow, warm socks. losing your body hair makes life chilly!
a country drive just to get out and see nature for a bit from the comfort of the passenger seat
texts just to say you are thinking of them with something cheerful. stu hated getting photos of people’s sad faces saying they were thinking of him but loved cheerful messages
offers to babysit or entertain the kids for a few hours.
regular help. this might sound obvious but you could do a rota between friends so there is regular help/visits that they don't have to ask for
meal prep - healthy meals on the doorstep are so helpful. check any dietary needs first but meals made for us were the most helpful practical help we received
gift certificate for reiki or gentle massage, reflexology, someone who can do home visits (and is experienced working with patients)
accessories and make up for hair loss
taking the bins out, virtual reading hour with the kids, walking the dog regularly or when they have an appointment
A charity we just heard about
Recently I was told about a beautiful charity called Purple Heart Wishes - I wish so much that we had heard about them when Stu was still here. They grant wishes to people diagnosed with terminal illnesses aged between 18 and 55 - the wishes range between days out and experiences to breaks away in the UK for you and your family. The key thing is to apply for a wish to be granted while your loved one is still well enough to enjoy it with you and create memories.
I'm going to be writing about Purple Heart Wishes in more detail within the Steps pages and Sue, who founded the charity after her daughter Lindsey died of GBM at just 29 years old has generously agreed to share their story in the Other Stories page which will be coming soon.
You can find more information about Purple Hearts Wishes here
PURPLE HEART WISHES
well intentioned things to avoid doing
Don’t shave your head
Don’t ask them “why has this happened to you?” That just makes it feel like its their fault and serves no purpose.
Don’t decide what they need. Ask what they need.
Don’t put the onus on them to fight the good fight. Its not a fair fight and will make them feel like they failed if they don’t “win”
Don’t push them to talk about it. Ask. If they say they don't want to talk about it, change the subject and talk about normal fun stuff.
Don’t send links to helpful articles or books unless specifically asked. I totally understand that you might want to hit the internet hard as a way to help, but unless you have a seriously in-depth understanding of the individual medical circumstances your loved one is facing with this disease, your research might cause more harm than good.
Try not to offer medical advice or suggestions for ‘natural remedies’. Unsolicited advice, however good a place it comes from, is more than likely to miss the mark. Ask them if they want help with research
Don’t share scary stories about people you know who have had cancer. It serves no purpose.
Perhaps most importantly, decide right now if you can handle being friends and really helping or if you can't. If you’re going to bail, do it right away so you don't end up saying things you don't mean and promising things you have no intention of doing. That kind of flaking out will end the friendship.
Toxic positivity. Telling someone you've got this might seem like a good idea but unless you know for sure then gentle encouragement is better
Check what narrative your person is using. If they don't like the battle analogy then better not to use it. Not everyone describes cancer as a fight. Its definitely not a fair one.
If in doubt ask them if they want help with research
Instead of "you're so strong" you could say "the way you are handling this is really amazing"
Instead of saying "I dont know how you are coping" you could say "I'm sure this feels impossible, I will step one day at a time with you"
instead of saying "sorry this is happening to you" you could say "this is fucking terrible I love you so much"
Instead of saying "everything happens for a reason or God always has a plan" you could day "I have no idea why this horrible shit is happening to you but I'm here for anything you need"
Instead of saying "I can't imagine" you could say "tell me how you are feeling so I can understand better"
Be mindful that they may not be able to enjoy the things they once enjoyed. Telling them you're enjoying a beer but they cant have one is insensitive and not funny
An important one to jot down - avoid platitudes. Everything definitely doesn't happen for a reason
Instead of saying "you know where we are" or "we're with you every step of the way" help in practical ways
INFO AND steps
Check out some of our useful pages
