Tricia's Story

This is hard. Stephen won't admit that he is ill, and I won't admit that I am a carer. Neither of us accepts that Normal Pressure Hydrocephalus (NPH) is degenerative and not cured by the shunt; we try to ignore the truth that the inevitable is just delayed.

Over the past 5 years, Stephen has had problems at work and has been to see his GP on numerous occasions. He was told that he had depression, that he was bipolar, and that he had nothing the matter. Finally, work told him to go home, and he was signed off for several months, which became permanent. He saw a private psychiatrist who admitted him urgently to the Priory. After several weeks of therapy and medication, there was no progress.

Over the next few years, through various psychiatrists and different medications, there was still no progress. I didn't think that it was depression and asked for the local NHS neurologist to assess for Alzheimer's, but the report was negative.

Then, in April 2021, I saw a TV programme about a neurologist who assessed a patient to see if the problem was neurological or psychological. I used a private GP who arranged for every blood test he could suggest to eliminate metabolic reasons for Stephen's tiredness, poor concentration and memory, apathy, poor walking, and increasing incontinence. The GP then referred Stephen to the neurologist who I had seen on the TV. He arranged a DAT scan to eliminate Parkinson's, a psychiatrist to assess his depression, and an MRI to look at his brain. The diagnosis of NPH soon followed, and then the referral to the neurosurgeon. After an unsettling wait while the neurosurgeon changed hospitals, an essential visit to a cardiologist, and a series of tests to see if he could have a brain operation while on heart medication, Stephen had a very encouraging Lumbar puncture with clear signs of improvement. His shunt was inserted in October 2021.

We had never heard of NPH, neither had a close friend who is a GP, and the local NHS neurologist who saw Stephen again in December 2021 said that he didn't think that NPH existed or that a shunt would make a difference. He also said that the 2 annual MRIs that he had viewed showed nothing to indicate water on the brain. By now, I was a secretary, a taxi driver, a deep wallet, constantly on the phone organising appointments, an internet researcher, and so exhausted. 

Before the Lumbar Puncture, the Neurosurgeon told us to contact Shine. I made a call, and then the lovely Jennie with the calm and reassuring northern voice came into our lives. We didn't understand about the operations; Jennie tried to explain them. We didn't know if we were entitled to financial help, but Jennie explained what we could apply for. However, we still haven't got around to doing so. She answered all our questions, pointed us in the direction of help, phoned us weekly, and made me feel less alone.

We don't have children or even siblings that can help us. We are fairly private people and found it very difficult to tell friends about the symptoms and the diagnosis, but with Jennie, we could be open and relaxed. I tried going back to work intermittently, and Jennie continued phoning and trying to engage my husband in conversation, even though he was even more uncommunicative than ever. Whenever I asked something new, Jennie contacted other people in the Shine team and came back to me with answers. She found a couple of similar ages for us to speak to on the phone, and they suggested Facebook groups that have been very useful. I know that I can contact Shine if ever I need to, and that is very reassuring.

Caring is hard. Stephen refuses to help himself. He has exercises but only does them if a physio, OT, or carer makes him do them. He can get up, shower, and get dressed, but only if I nag him. He can cook and get meals ready but only does so if I tell him to. His favourite refrain is "There is no food in the house," even though the kitchen fridge and cupboards contain his favourite treats. He gets dehydrated as he will only drink when told to, which resulted in him being admitted to the hospital recently when we both had gastroenteritis. I miss having a husband who looks after me when I am ill. I can't tell him my problems as he only wants to focus on himself. I miss having an energetic husband who is always on the go doing his hobbies.

Stephen doesn't research NPH or want to know anything about it. He thinks the shunt has cured the illness as he is rarely incontinent now, and can walk better than before the operation. However, he rarely walks more than 1500 steps before giving up. He has never had falls, but the apathy and tiredness remain.

I am no longer me. I am a carer. The final irony: When he was admitted to the hospital with COVID-19 in Madeira in December 2020, I couldn't understand the papers that were written in Portuguese. I reread them a couple of months ago and discovered that he had been diagnosed with NPH on admission. Why couldn't the UK doctors have seen the problem earlier?