The grief of facing the loss of a loved one intensified by the pandemic
There is never a good time to mourn, but facing the loss of a loved one has become all the more cruel since the arrival of Covid 19 on our shores, by the pandemic restrictions in place and the inability to seek solace from friends and families in traditional ways we previously took for granted.
Geraldine Renton, mother of three and author of the book Ethan and Me, has faced the unbearable situation twice in recent months – losing her brother Liam to cancer in March 2020 and then later that same year when the unthinkable happened and his eldest son Ethan passed away last September.
“Ethan was diagnosed in 2008 with a rare genetic life-limiting syndrome called Hunter Syndrome,” explains Geraldine.
“When they first told us that, I didn’t really take them seriously. I heard them but thought, “sure they can’t be right”. They were telling us that eventually Ethan would lose the ability to walk, talk, and eat and be just a shell of himself. They weren’t even sure if he would be able to see or hear and it would take his life.
“I guess I didn’t think that would happen. I knew this would be the case on some level, but I didn’t really keep visiting it, I just went “okay what they told me is what they m ‘said “but I was looking at a kid who was on a plane at the time and jumping off the sofas saying” mom look at me, look at me “.
“But, over the years, he was slowly starting to lose the abilities he had. It started with speaking. It started with words, then it became balance. Then it became food and then everything. People compare it to Alzheimer’s disease. It’s very similar to Alzheimer’s disease, except he never had to live his life to the fullest to have memories and stuff.
“I remember it very well, on March 13, when the message arrived on my phone telling me that the schools were closing,” said Geraldine.
“I was sitting in the hospice with my brother and he laughed, I remember him laughing because of my face. At this point, we weren’t sure how bad Covid was, but when that post came on the 13th, we knew it was bad because they were closing schools.
“Ethan had to finish his studies and move on to adult services. Luckily I had a place for Ethan, I was happy with it, but that also meant Ethan wasn’t going to get the transfer and transition.
Schools being closed and Geraldine’s brother, Liam, telling that he had not gone to live long, Geraldine could only visit her brother in the evening “when Ethan was in bed”.
Liam died on March 22.
“I called the center and begged them to take Ethan away so I could attend my brother’s funeral,” Geraldine said. “There were only close family and no children were allowed. They have been very good to me. They opened the center and took Ethan.
“When all of this settled, everyone was locked up at home and I didn’t see any of my family. It was just us and I begged them to take Ethan because Ethan was not doing well at home and I was not able to do the exercises he was doing because it always takes two people to go. ‘take care of Ethan and I didn’t have the two people.
“Jack [Geraldine’s second son] was doing his Junior Cert, so he was a little worried about that. Then I made my little boy Daniel run thinking everything was okay, building legos in the most uncomfortable space and not really understanding that I needed clear ground because I was supposed to. do all the exercises with Ethan alone, physically move him, change him, all that sort of thing. My son Jack basically became this helper for me even though he had his own worries and stresses about school.
“I contacted boys’ schools and explained the situation I was in,” she continues. “I was deeply upset and told them they weren’t going to do their homework. Their two schools were fantastic.
Ethan was never able to complete his studies. Having turned 18 during the first lockdown, he started his adult services this fall.
“He had three nights of respite to his credit and two weeks in the center to his credit when he entered his day center on September 22,” explains Geraldine. “He had a great day. They called me to tell me he had a great day. He went to his respite that night and they called me around 8pm that night to tell me he was sleeping soundly and they made a joke about how much he must have eaten.
The next morning, Geraldine got a call from Ethan’s Respite Services telling her they had to call an ambulance for her son.
“He died that evening at a quarter past six, in bed with me,” says Geraldine. “He came out of nowhere.”
Ethan’s funeral “was a bit hazy. Luckily we were at step 3 by then so we could have people in the house but they couldn’t stay. There were people entering our house in groups of two and three. They were very respectful.
“The hardest part for me is that no one could touch us and I don’t know who the people were because of the masks. It wouldn’t click with me. I couldn’t see their faces and think I was in shock too.
“It was a lonely funeral. There were people trying to give you affection and they couldn’t. And there were people standing behind the walls giving you kisses and calling your name and saying how sorry they were and you could see they were crying. Some of my family came to the house with me [after the funeral] and we sat down and had a few drinks in honor of Ethan. But I didn’t hear the school stories, the stories of workers who knew him very well.
The continued restrictions and lockdown have meant Geraldine has struggled to grieve and deal with “loneliness.”
“I can’t even go in a group. I would like to go to a physical group with parents who have lost their children and get support. I cannot and I will not zoom. I won’t do it because my kids will hear me and I don’t want to. I can’t go to my friends and have a drink or chat with them and laugh or tell stories, or go to Ethan’s school and even talk to them or meet people who took care of Ethan.
“I have to be very careful what the children hear me say. It’s so important to me. As long as Ethan was alive, I didn’t want them to live in sadness. While Ethan has passed away, I still don’t want them to live in a cloud of sadness.
Support is something they are sorely lacking as a bereaved family. Geraldine says that she and her husband Dave talk “a little bit about Ethan” but, she adds “I’m sure when it comes to the real deal Dave would prefer to talk to someone else because he doesn’t. don’t want to take care of me and I don’t want to do that with him. He’s going through a lot. And our own parents are going through a lot and I haven’t seen them go through this confinement either. “
“Boys are very good with their feelings. They’ve had a lot of help from LauraLynn over the years and from Temple Street and Galway Hospital so I can’t fault these people at all. But since the lockdown, none of these people can help us at all in person.
“Jack (16) is very open to the fact that he is missing his role in the family, which is sad,” says Geraldine. “It’s sad that a child says that. He was helping me so much with Ethan.
Geraldine admits it is “very difficult to watch” her teenage son unable to meet his friends “when he needs them” as she hides herself if she feels she is about to become very upset.
“I’m doing my best so I guess I hide a lot of things because I’m home all the time and it’s too hard to let it all out. And everyone is in mourning. Everyone in this goddamn house is in mourning. You can’t lie on it.