Rachel Thompson, mum to Frank, talks candidly about the impact of Covid-19 on her family, their fears and what it means for caring for a child with a life-limiting condition.
Rachel’s blog, where she shares her thoughts on how Covid-19 has caused her and her husband to re-think their son’s end of life plan, is published in Dying Matters Week 2020.
Rachel Thompson is a member of Together for Short Lives’ Advisory Council.
In some ways as parents to a life-limited child, my husband and I are well equipped to deal with social isolation. We are already used to being isolated from activities that most families take for granted. Things like trips to parks, the zoo, the shops and restaurants are difficult for us due to the lack of suitable changing places (toileting facilities with a hoist) Most public transport and venues are still not wheelchair accessible. Then there are the funny looks, and the often clumsy but well-meaning offers of assistance; like the lady on the bus who wanted to call an ambulance because my husband was clearing Frank’s airway with a portable suction machine.
Covid-19 has caused us huge anxiety
We have had to take social distancing to more extreme levels than most. We started excluding non-essential contacts, school, new care givers, trips outside, working outside the home, before other families. Frank’s condition makes him especially vulnerable to chest infections, he has had multiple bouts of pneumonia and these almost ended his life. There is little doubt in our minds that Covid-19 would likely result in Frank’s premature death.
If Frank becomes seriously unwell where should we go?
Would we still go to A&E? He cannot communicate, so its unthinkable he could be in hospital without us. We understand he would not be a priority for life-saving treatments should he become infected, and there is a significant risk of Frank acquiring Covid-19 in hospital. So now more than ever we are preparing to be ready for Frank’s end of life care alone at home.
The impact of Covid-19 on hospice care
Since Frank’s diagnosis of Batten Disease we have had to accept that Frank’s life will be short and have had to plan for end of life care. But planning for our son’s death has had to change. The children’s hospice we have relied on for the last eight years for respite and emergency care is temporarily closed, and the service has moved much further from home. They are offering online support and access to expertise by telephone, but their physical absence heightens our sense of isolation.
But what if my husband and I become sick with Covid-19?
Frank requires 24/7 care and is dependent on care givers for everything. We have had to involve Frank’s teenage siblings more with his care. Making sure they would be able to deal with his needs if we both need to isolate, like administering multiple medications and feeding him via tube, as well as positioning and changing his pad, monitoring him and responding to seizures.
Some families that we know have gone without their carers
We had to weigh up the risks and benefits of having Frank’s care team coming into the house. We decided to keep our small team of carers supporting Frank, especially overnight so we don’t become burnt out and unable to care for him as this looks like being a situation that for us will continue for many months. Having some help enables us to enjoy some quality time with Frank, a relaxed family meal or a walk with the dog.