Alzheimer

Life in a dementia care centre during India’s second COVID-19 wave: Part four

This is the fourth blog in a four part series from Senju Joseph, who is based in India and works at the Dementia Respite care centre in the city of Thrissur. In this series, Senju documents his first-hand experience of working in a dementia care facility during the ongoing spread of the COVID-19 Delta variant.

We continued to hold the hand of our resident (AR) throughout the hospital stay so that she wouldn’t remove the IV cannula. Laying on the hard floor, there wasn’t a moment she ever settled.

While in the hospital, I was in constant contact with the centre over other patients’ conditions. In the morning, I requested for AR to be discharged as it was clear that the hospital environment was making her distressed and we couldn’t feed her upon admission.

They replied that permission could not be given for AR to be discharged as hospital protocol would not allow for any Covid positive patients to leave until they became negative. As some people began to realise this, they tried to take control and forcibly discharge themselves or their loved ones. Some patients died while waiting to be discharged. (A lawsuit is currently pending against the hospital for the protocol to be changed.)

In the meantime, we kept trying to come up with ways to get her a bed, so that she could at least to be comfortable. It initially seemed unlikely but fortunately we got a bed for AR around 23:00 that evening.

Once we had her in a bed, I began trying to arrange my own discharge from the hospital so that I could begin arranging oxygen at the centre for her eventual discharge. Oxygen was very short in supply in the whole county and Thomas, the treasurer of Alzheimer’s & Related Disorders Society of India (ARDSI), arranged to bring it from our other centre in Cochin.

During this time, I received a call from the centre. One of our other residents (MW*) was struggling and needed medical help immediately.

I arranged for an ambulance to pick him up from the centre. I didn’t want to bring him to the hospital but I knew it was our only option.

I rushed to meet him in the casualty department of the hospital. When I got to him, he seemed to be doing better from what I had heard on the phone. I requested the doctor to take off his oxygen, just so as to check if he could do fine without it.

After 10 minutes, we checked his saturation and it was reading 98 –  a good score. I told the doctor that I didn’t think he needed admission; however, the doctor disagreed, saying he was high risk and they would have to admit him.

I explained to the doctor about our experience with AR the night before and the practical difficulty of treating a dementia patient in a crowded, noisy and busy corridor without a bed or proper food.

When the doctor didn’t seem convinced, I contacted MW’s family about the situation. They agreed with my proposal, thanking me for taking initiative to ask for the discharge.

The doctor finally relented after I notified him that the family had given their consent for MW to be discharged. As a condition, I had to give my own personal consent that MW was being discharged at my own risk.

He was soon released and sent back to the centre, where the oxygen arranged by Thomas had just arrived.

I went back to the ward to see AR and she was still in the same condition: she wasn’t taking any fluids, was very unsettled and tired, and kept trying to cough, sneeze and spit.

I was growing more concerned about her wellbeing. I approached the doctors of the ward again, explaining how this type of environment can harm people living with dementia. I said she would lose her life not because of COVID-19, but because of the stress and lack of care that we provide her on a daily basis.

Somewhat convinced by my case for AR to be discharged, the doctor called the superintendent of the hospital, and I explained the situation again. They eventually agreed to discharge her to our centre, on the condition that we signed a letter agreeing to take care of all of the responsibilities of being discharged from the hospital, and that we would not hesitate to bring her back in case of an emergency.

By around 17:45, we were discharged and back at the centre.

On Day 22, we tested everyone again and everyone came back negative. The centre had officially recovered from the outbreak.

After testing negative, Priya went to the hospital for blood tests and an ultrasound scan. Thankfully, no issues were found, and I am happy to say that both Priya and Austin are doing well.

For now, our fight against COVID-19 is over. In Thrissur, vulnerable people with special requirements have ‘passed’ the first stage. The next phase is to be diligent and extra cautious for at least a few more months, to ensure that everyone is free from post Covid complications.

* The initials of the Dementia Respite care centre residents have been changed to protect their identity.


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