Balancing grief and sensory overload

"The C word". How to manage hospital visits, advocate and self-regulate when you’re expecting the worst

Today marks a week since I arrived into the UK from Aotearoa NZ. A lot can change in a week! Britain has a new Labour government, the overworked and underpaid NHS doctors have resumed work following strike action, and my Dad has been suddenly diagnosed terminally ill.

Mum asked me to get over here as soon as possible, as she instinctively knew my Dad is dying. Within hours, I was on the first of three flights. A total of 30 hours in transit from Wellington to London Heathrow via Auckland and Singapore.

Top tip to beat jet lag on long haul travel: to settle quickly into the timezone of your final destination, cry for 30 hours nonstop. It really works!

My hands are shaking now as I sit on a plastic chair holding my dying Dad’s hand in my left hand, and type this one handed with my right hand. Mum is sitting on the other side of him while my brother, who stayed in overnight with Dad, is trying to get some sleep in the comfiest chair the staff could find him, complete with white starched hospital sheets, pillows and blankets. The quality of palliative care is excellent.

All around us, the other patients in this acute respiratory ward are suffering. Coughing, asking for help, they are in distress. My noise cancelling earphones are just about taking the edge off. The patients are all being well tended to by the nurses, doctors and therapists, but their discomfort is clear and unmasked. Dad, on the other hand, is being medically managed to alleviate all pain and discomfort, rapidly and slowly slipping away from us.

The NHS medical team have been outstanding. From the paramedics I called to my parents’ house a week ago, to every ward nurse and specialist doctor encountered from triage to admissions, to palliative care. They have all shown us nothing but kind professionalism and genuine compassion. My astute autistic hounding for investigations, results, treatment have informed us as we headed to this stage: sitting patiently at Dad’s deathbed waiting for him to take his last breath.

I don’t want to spend too long writing or editing here today, as I am chronically under slept and already riding the waves of grief. I have been wanting to write something to share with you all, but advocating for Dad and trying to self-regulate myself has been a full time job, in lieu of my usual caring duties to my autistic children back home.

A few reflections on my experience that may be of interest to other sandwich generation autistics:

• You are stronger than you think, even when you feel you couldn't possibly be any weaker. Even when you are curled up in a ball on your floor at home wondering how you can get to your suitcase, never mind to the airport and across the planet in a hurry.

• People everywhere want to support you, you only need to ask them. The Hidden Disabilities Sunflower lanyard scheme is great! Airport staff know about it, but passengers may not know why you are wearing it. After my husband booked my flights, I called the airlines to self-advocate for Meet and Assistance services to take me to my connecting flights. When asked why I felt I needed the service, I explained that I have no sense of time nor direction, and will become mute and disorientated when overwhelmed. They put this all on file so I could have an appropriate level of support.

• It’s never too late to advocate for your parent or elder, if you suspect they are undiagnosed autistic. Making all the staff aware of Dad’s undiagnosed neurodivergence at every stage of his medical and end of life care has ensured they are aware of any sensory sensitivities such as keeping feet uncovered, preferring to lie on one side in bed, food preferences, giving space and not asking unnecessary questions. Nobody has questioned it, or told me I am wrong. Just like with your neurodivergent children, you are the expert on your family members’ support needs, hypersensitivities, triggers and preferences.

• Always trust your instincts, and act on them. Never assume someone else knows your needs more than you do. You are always entitled to first, second and third medical opinions. Supporting elderly family members is a team effort. Collaborate, ask for clarification, tell others when you need extra processing or decision making time. Everyone has your loved one’s best interests at heart, but you can make their wishes known in end of life care.

• Write detailed notes when doctors give you any information. NHS doctors are spread thinly across the hospital wards, with every patient deserving of as much time and attention as the next. The staff don’t have any extra time or energy to give you, so if you need extra processing time in a crisis, write down all your questions, write down their answers, and/or voice record discussions. Medical staff only tell you what they know if you ask them and if you are present when they do their rounds. Try and get to your loved one before the doctors arrive so you can speak up on their behalf. If you need an advocate, ask if this is a service available to you.

• Trust the medical team, and avoid Dr Google. Staff are acting on real time symptoms, test results, responses to treatment and using their professional judgment. They will consider it disrespectful if you are overly challenging their decisions just because an internet engine search led you down a rabbit hole. Let them do their job, collaborate with them, but please don’t get in their way.

• Take care of your own needs too - stay regulated and hydrated in hospital. No space is too small to stim! If you have to stay on the spot, heel raises are good - just stand on tiptoes and bounce your heels up and down. Take your meds. Wear your sunglasses. Take your Dad’s anxiety medication (just me?). Drink coffee. Go to the toilet regularly. Sleep at night if possible. Wear light, layered clothing in the hospital especially if, like me, you are into the seventh day of a prolonged hot flush! 🥵

• “Do not smoke!” Sage advice to me from a ward doctor when they told us Dad has lung cancer. Let’s assume that goes for vaping too. I feel like yelling at all the people smoking outside the hospital entrances to give it up!

• Break the social taboo of cancer by calling it what it is. Euphemisms used by doctors this week to discuss Dad’s condition include a shadow seen in a scan, a mass, lesions in the brain, “cancer” (whispered!), “he’s a very poorly man” and, my personal fave, “The C word” - no, not that C word! 😆

  Cancer is so dreaded by our society, that even the same doctors who are diagnosing it don't want to name it. I have been telling them all week that I am autistic and need to know exactly what it is they know, as I can not tolerate having information withheld.

• Ask all the questions without expecting to get all the answers. If you are sitting at the deathbed of your dying father and the medical and palliative staff have told you he has hours to live, possibly days, and no more than a week, then try to sit with that uncertainty, try to enjoy what precious little time you have left together, and get off your bloody laptop, Sam! 💕