From mum to carer and back again
BMJ 2023; 383 doi: https://doi.org/10.1136/bmj.p2283 (Published 01 November 2023) Cite this as: BMJ 2023;383:p2283
- Annette Hurst
In March 2022 my 25 year old daughter tested positive for covid-19. She was unwell and didn’t get better, and she was unable to look after herself. She moved back home, and I became her carer.
I found my daughter’s symptoms frightening. Debilitating extreme fatigue meant she was unable to climb the stairs; dizziness stopped her from standing for more than a few minutes (making a cup of tea was out of the question); nausea and gastrointestinal pain were frequent, and she was totally intolerant of exercise. I also noticed she had heightened anxiety with catastrophic thoughts. She could not regulate her body temperature—her hands and feet were permanently cold—her heart rate soared, and her blood pressure dropped as she stood up.
The severity of my daughter’s fatigue was shocking. Five minutes of watching TV or emailing the GP would drain all her energy and she would need to lie down for hours to “recharge.” Spending her precious little energy wisely became a priority and I soon realised that interactions with the medical practice “cost” a lot. Unfortunately the practice didn’t see this. She was repeatedly asked “what is wrong with you?” which de-legitimised her illness and caused more anxiety in pursuit of just a sick note.
Alone and unsupported
My daughter’s condition showed no improvement, and the long covid clinic offered only an exercise programme which she knew was impossible. So we agreed that I would use the research skills gained in my physiology PhD to undertake hours of painstaking and often demoralising work scouring PubMed for possible interventions. My mantra was always “Is there a scientific study to support this?” as I was acutely aware that I am not a medical doctor.
With my daughter’s consent I made an appointment to see her GP alone to seek advice and support. We discussed the documented interventions I had found and I asked to add a one-page narrative to her medical notes that detailed her many symptoms and—more importantly—what they meant for her everyday life. Getting a sick note became much easier, antidepressants were offered (and refused), but the research papers I found were dismissed.
The long road to health
I was disappointed and dismayed by the refusal to acknowledge possible helpful interventions—even rehydration drinks for her dizziness. With very little known about long covid and no available treatments, I agonised over whether I was experimenting on my own daughter. Finally, we decided we had no choice, so with my daughter’s agreement I became her “stand-in doctor” as well as her mum and her full-time carer.
Over the next few months, my daughter had (among other things) a course of Perrin technique massage for fatigue, learnt to calm her anxiety through guided imagery for healing, and had a dozen sessions of hyperbaric oxygen therapy.
One year on, she still does the guided imagery meditation, and an amazing occupational therapist helped her return to work. Did any of the interventions make a difference? We will never know. I am now back to being a mum again, but looking back I wish a healthcare professional had listened, respected, and accompanied me on this long journey as a carer.
What you need to know
Including the carer in the systems and processes of healthcare early after diagnosis can help relieve the burden of communication and administration on the patient
Positive language and encouragement can validate symptoms and help support mental health and wellbeing
Ask the carer what the patient’s life is like. Include this narrative in the patient’s notes to help ensure interactions with the patient are appropriate
Education into practice
How can you provide care and support for patients whose long covid symptoms leave them so fatigued that even a phone call is unmanageable?
How can you improve your knowledge of the evidence for non-medical interventions for people living with long covid?
How can you involve or accompany carers in a person’s recovery plan?
Footnotes
Competing interests: none declared.
Provenance and peer review: commissioned; not externally peer reviewed.