When a parent or loved one becomes seriously ill, you can guarantee that no amount of previous preparation can equip you for what is in store. Each situation is unique, and I can only reflect below on my personal situation where my mum got Stage 3 Oesophagus Cancer and what helped me get through it. This is simply my opinion and I do recommend you seek out professional help in addition to this checklist to help you keep mentally well during this stressful time.
Diagnosis and the research stage
Good ol’ Dr Google
Like many people, Googling the illness or disease is our first point of call. This is a very quick and easy way to get informed, but please be aware that the information is often set in a tone that is not only full of medical jargon, it can also state the worse case scenarios, in turn, scaring you unnecessarily into thinking the worst.
Consultations with the specialists
- You may have a challenging patient, who fails to relay all the information in detail to you and the rest of the family or not allow you to attend the specialist consultations. It is important to find the balance by respecting the patient’s wishes and always seeking out the necessary information (including a second opinion on the illness).
- Always ask questions if you are unsure and make sure each member of staff has your contact details should they want to get in touch.
- Know your loved ones important details should anything really upsetting happens; their allergies, their medical history, their lawyer’s name, potentially passwords and where their most valuable items are stored.
Due to the changing staff working on your loved one’s case, you will need to be patient yet vigilant and firm as you try to keep up with their care management. Sometimes information is left out and not passed on to the incoming from the outgoing team, which can be frustrating for you yet try to see it as you helping them simply connect all the dots when needed. Try to keep flexible and open as various specialists and teams assess the situation, always ask questions and note down the information given to your loved one as quite often they are not at their best to digest all the jargon and severity of the situation. I got by with a “bracket of error” where I almost expected that small mistakes or delays in care could occur due to the pressure the hospital staff are under – however, there is a limit so make sure you know yours!
Becoming a carer
Support from individuals
It sounds obvious, but you will need support even if you are quite strong by nature in these challenging situations. Build a support network around you with family members and friends or I found great comfort in seeking out local community groups that were similar to what I would attend in my home town (I was a carer in a city that was not my normal residence). I had a toddler with me during the time of caring, so I connected with local parenting and kids activity groups. At first, I was apprehensive as to how much personal information I wanted to divulge to strangers, but these groups ended up being so supportive and welcoming – it’s amazing how humans all over have been through something in their lives and all naturally pitch in to help you during this time.
Support from organisations
I never knew there were associations of carers for carers, yet now I understand why! It is wonderful that in most cities or regions you can access organisations that are specific to supporting you and your loved one through a particular illness and caring for them. I met with a Cancer Society Counsellor when my mum was uncharacteristically down and found the advice they gave very helpful – I was so new to it all yet they have had so much valuable experience.
Self-care and keeping sane – the checklist
- You tend to put yourself last during this time, yet running on empty helps no one. It’s important to get creative with your time restrictions and still eat healthily (think whole foods that nourish your energy levels!), exercise (walking and talking to release some pressure) and find time to relax alone as a carer.
- You will no doubt be exhausted more than usual so listening to both your body and mind is essential – go to bed earlier or sleep when the patient sleeps.
- Forget about keeping your normal, ultra-clean and diligent routine in check. You need to survive, but try to function by doing the basics well.
- Grieve, your relationship with your loved one is likely to be changed forever so set some time aside to meditate and digest that so that you can be realistic about the changes going forward. Remember it’s totally alright to vent your frustrations and sadness, it is one of life’s greatest difficulties, but it is a part of the whole journey and we need to make peace with it in our own unique way.
- Accept that you will be stressed or feel like you are on the world’s worst roller coaster. I found GREAT comfort that everything that was happening was temporary and focused on what I could do within my control that very day.
- Remember to ask for and accept help, we simply can’t do it alone. And people love to be a part of this time with you, it builds connection and deepens existing relationships.