WEBVTT - Helen | Betrayal Weekly 0:00:02.400 --> 0:00:06.200 There's this feeling there. Moms are good no matter what. 0:00:06.320 --> 0:00:09.119 Moms are good even if they do the wrong thing. 0:00:10.080 --> 0:00:13.400 It's because they love you so much. If you need 0:00:13.520 --> 0:00:28.720 to accept the lie to live, then you accept the lie. 0:00:29.440 --> 0:00:32.800 I'm Andrea Gunning and this is Betrayal, a show about 0:00:32.840 --> 0:00:36.040 the people we trust the most and the deceptions that 0:00:36.240 --> 0:00:44.639 change everything. Today we're telling Helen Naeler's story. Helen grew 0:00:44.760 --> 0:00:46.120 up in the Midlands of the UK. 0:00:46.760 --> 0:00:49.880 The place where I was born was a really little town, 0:00:50.520 --> 0:00:54.800 so you basically knew everybody, and I'd walk through town 0:00:54.880 --> 0:00:56.680 and bump into ten people I knew. 0:00:57.160 --> 0:01:00.920 She was an only child. Her parents were Eleanor and Allan. 0:01:01.400 --> 0:01:04.680 We lived in a really nice three bedroom semi detached 0:01:05.120 --> 0:01:09.360 which was painted yellow with a brightly door. They have 0:01:09.680 --> 0:01:14.279 very seventies taste in decor, so it quite swirly brown 0:01:14.360 --> 0:01:19.560 carpets and very peach. If there was a color choice, 0:01:19.560 --> 0:01:20.200 it was peach. 0:01:20.880 --> 0:01:23.440 Helen's parents were older than her friend's parents. 0:01:24.080 --> 0:01:26.959 Mum was thirty five when she had me. My dad 0:01:27.040 --> 0:01:31.160 was over forty, and at the time that was quite 0:01:31.200 --> 0:01:31.759 a big deal. 0:01:32.840 --> 0:01:35.520 Helen was very young when her dad's health took a 0:01:35.560 --> 0:01:36.400 turn for the worse. 0:01:37.040 --> 0:01:40.720 When I was seven, my dad was diagnosed with heart 0:01:40.760 --> 0:01:46.440 and lung problems. He had cardia myopathy and asthma that 0:01:46.640 --> 0:01:48.160 eventually became emphysina. 0:01:49.400 --> 0:01:53.920 Not long after her dad's diagnosis, Helen's mom, Eleanor, also 0:01:54.000 --> 0:01:59.200 got sick. She stopped getting out of bed and stopped 0:01:59.200 --> 0:02:02.440 being able to play with Helen. She was diagnosed with 0:02:02.640 --> 0:02:07.960 ME my algic and cephalomyelitis, also known as chronic fatigue syndrome. 0:02:08.360 --> 0:02:11.640 It can cause muscle and join pain, dizziness, and headaches. 0:02:12.200 --> 0:02:17.560 The most common symptom is extreme tiredness, making any activities difficult, 0:02:18.120 --> 0:02:22.000 going for a shour, going to work. You can not 0:02:22.120 --> 0:02:25.239 sleep well, you can have problems cognitively. 0:02:26.280 --> 0:02:29.960 ME can cause debilitating exhaustion. It's chronic, and there is 0:02:30.000 --> 0:02:33.880 no cure. The disease sometimes occurs after a viral infection, 0:02:34.520 --> 0:02:37.920 kind of like a long COVID. Treatments are designed to 0:02:37.960 --> 0:02:41.800 help patients manage their symptoms and learn to adjust to 0:02:41.880 --> 0:02:43.560 a much slower pace of life. 0:02:44.200 --> 0:02:46.920 My mom used to say if she wanted to do something, 0:02:47.240 --> 0:02:50.320 she'd have to spend a week resting to prepare to 0:02:50.360 --> 0:02:53.840 do that thing, and then a week after resting to 0:02:53.840 --> 0:02:54.520 get over it. 0:02:55.760 --> 0:02:58.959 Her mom retired early because of her illness. So from 0:02:59.000 --> 0:03:02.160 the age of seven on, Helen grew up with two 0:03:02.360 --> 0:03:05.960 sick parents. Her life revolved around their illnesses. 0:03:06.960 --> 0:03:12.080 It completely shaped my life. I was the child of 0:03:12.120 --> 0:03:15.239 two disabled people, and that was my identity. 0:03:16.440 --> 0:03:18.680 While her friends were in first grade learning to read, 0:03:19.200 --> 0:03:22.880 Helen was worrying about her parents, especially her mom. 0:03:23.400 --> 0:03:26.880 Although I knew that my dad's illnesses were more serious, 0:03:27.680 --> 0:03:29.240 life revolved around my mom. 0:03:29.840 --> 0:03:33.200 Her mom's chronic fatigue took over their family's life completely. 0:03:33.919 --> 0:03:37.280 Eleanor slept for eighteen hours a day and didn't even 0:03:37.360 --> 0:03:39.600 have enough energy to walk to the mailbox. 0:03:40.360 --> 0:03:43.040 She wouldn't walk me to the end of the road. 0:03:43.080 --> 0:03:45.880 We're talking like a small road with a corner shop 0:03:45.920 --> 0:03:48.200 at the bottom, and she wouldn't walk me there because 0:03:48.200 --> 0:03:52.680 she couldn't. She would be in bed every afternoon that 0:03:52.760 --> 0:03:55.760 I remember. We didn't go out at weekends. 0:03:56.280 --> 0:03:59.160 On the rare occasion that they did leave the house together, 0:03:59.520 --> 0:04:02.960 they had to adapt their activities around her mom if 0:04:02.960 --> 0:04:06.280 they went shopping. Eleanor wrote a mobility scooter. 0:04:07.080 --> 0:04:11.280 As a teenager. That was so embarrassing, Like already I 0:04:11.360 --> 0:04:15.000 had these parents who were older, and they stood out 0:04:15.080 --> 0:04:18.719 and now she was on this scooter like hurling around 0:04:19.040 --> 0:04:22.040 the shopping center. I was just so mortified. 0:04:23.600 --> 0:04:27.360 But over time, Helen got over the embarrassment and learned 0:04:27.360 --> 0:04:32.080 to accept her mom. Helen became her primary caretaker because 0:04:32.120 --> 0:04:36.080 they didn't have any extended family nearby, and Helen's dad 0:04:36.640 --> 0:04:38.719 spent most nights at the pub drinking. 0:04:39.720 --> 0:04:42.400 My dad was a really isolated figure. He didn't have 0:04:42.440 --> 0:04:46.239 many friends, he wasn't at work, he didn't have close 0:04:46.279 --> 0:04:49.960 family members. He was a functioning alcoholic one hundred percent. 0:04:50.880 --> 0:04:55.240 I can't remember seeing him anything but a happy drunk. 0:04:55.800 --> 0:05:00.360 He wasn't aggressive, but undoubtedly he was an alcohol. 0:05:01.440 --> 0:05:04.560 So Helen and her mom leaned on each other. It 0:05:04.600 --> 0:05:05.840 was them against the world. 0:05:06.640 --> 0:05:09.560 I had a really close relationship with my mom. She 0:05:09.720 --> 0:05:14.080 was my best friend. I talked to her about everything. 0:05:14.600 --> 0:05:19.159 I absolutely adored her. I thought she was perfect, absolutely perfect. 0:05:19.960 --> 0:05:22.839 But her mom needed a lot of support. 0:05:22.839 --> 0:05:25.760 And there was a sense of if my mom said jump, 0:05:25.880 --> 0:05:26.920 then you had to jump. 0:05:27.480 --> 0:05:29.599 Helen would come home from school and go straight to 0:05:29.640 --> 0:05:32.159 her mom's bedside. She'd sit on the edge of the 0:05:32.160 --> 0:05:35.360 bed and tell her mom about her day. Then Helen 0:05:35.440 --> 0:05:37.560 would make her mom a snack and set up a 0:05:37.560 --> 0:05:39.120 place for her to rest on the couch. 0:05:39.680 --> 0:05:41.880 We would watch on TV together and drink a cup 0:05:41.880 --> 0:05:47.160 of tea. I felt very very responsible for her. I 0:05:47.240 --> 0:05:51.680 was responsible for my parents' happiness and my parents' emotional stability. 0:05:53.839 --> 0:05:57.960 Eleanor's emmy was debilitating, but over time she found other 0:05:58.080 --> 0:06:00.640 people who struggled with the same simils dumbs. 0:06:01.200 --> 0:06:03.800 She was a part of an m group in the 0:06:03.839 --> 0:06:07.839 town and ended up leading it, and so every week 0:06:07.920 --> 0:06:11.640 she would have to sort of run these meetings. She'd 0:06:11.640 --> 0:06:15.240 do all this research to then write newsletters for the 0:06:15.360 --> 0:06:15.880 me group. 0:06:16.560 --> 0:06:19.320 Helen was proud of her mom pro finding purpose in 0:06:19.480 --> 0:06:22.400 community even though she was struggling with her disease. 0:06:23.360 --> 0:06:26.360 She actually won an award for being a health champion. 0:06:27.279 --> 0:06:29.960 Helen's mom went to bed early every night. 0:06:30.839 --> 0:06:32.599 My mom would go to bed, my dad would go 0:06:32.640 --> 0:06:36.240 down the pub, and I was just left to entertain myself. 0:06:38.279 --> 0:06:40.919 It was important that I was silent, because if I 0:06:41.000 --> 0:06:44.120 made any noise then I would wake my mom. So 0:06:44.440 --> 0:06:47.839 I would watch TV with subtitles on and no sound. 0:06:48.400 --> 0:06:51.200 When her own world in her little yellow house got 0:06:51.240 --> 0:06:55.560 too small, Helen escaped into her dream world. She loved 0:06:55.640 --> 0:06:56.080 to write. 0:06:56.520 --> 0:06:59.279 I wrote a lot of stories. I wrote a story 0:06:59.320 --> 0:07:02.520 about a girl who went into her loft and disappeared 0:07:02.600 --> 0:07:07.680 into a wonderful alternative reality with a happy family. I 0:07:07.760 --> 0:07:10.560 used to dance around the guard and singing. I'm sure 0:07:10.600 --> 0:07:11.600 the neighbors loved it. 0:07:13.040 --> 0:07:16.480 One day, when Helen was eight, she overheard her mom 0:07:16.560 --> 0:07:18.080 talking about her dad's health. 0:07:18.880 --> 0:07:22.760 I heard my mom say the doctor said he could 0:07:22.800 --> 0:07:28.760 just drop dead at any minute. I remember switching around 0:07:28.800 --> 0:07:33.520 and looking at her, absolutely horrified, and that weighed on 0:07:33.640 --> 0:07:36.720 me for the rest of my childhood. 0:07:38.000 --> 0:07:41.960 Hearing that shifted Helen's mindset. Even as a child, she 0:07:42.000 --> 0:07:45.280 felt responsible for her mom. She also learned to be 0:07:45.320 --> 0:07:48.480 extremely tuned into her mom. She tried to do whatever 0:07:48.560 --> 0:07:52.600 she could to make her happy. Over time, Helen lost 0:07:52.640 --> 0:07:56.040 track of where her mom's needs ended and where hers began. 0:07:56.840 --> 0:07:59.280 She used to tell me my likes and dislikes. I 0:07:59.440 --> 0:08:04.160 liked Sally, I liked strawberries. Those were my favorites. I 0:08:04.240 --> 0:08:05.720 deferred to her opinion. 0:08:06.400 --> 0:08:09.080 Helen learned to look to her mom for answers she 0:08:09.280 --> 0:08:13.320 idolized her. As a teenager, Helen missed out on typical 0:08:13.400 --> 0:08:17.920 teenage experiences because as soon as school ended, she went 0:08:17.960 --> 0:08:19.920 home to take care of her parents. 0:08:20.400 --> 0:08:23.200 In my teens, my average day would look like I 0:08:23.240 --> 0:08:25.960 would get up and go to school. My parents were 0:08:26.000 --> 0:08:28.840 both at home all day every day. My dad would 0:08:28.880 --> 0:08:30.880 go to the pub every day, then my mom would 0:08:30.880 --> 0:08:33.160 go for a nap every day, and then I'd come 0:08:33.200 --> 0:08:38.440 home and it was just all very insulated. 0:08:39.760 --> 0:08:43.120 But then when Helen was sixteen, there was finally a 0:08:43.160 --> 0:08:45.680 break from their quiet, careful routine. 0:08:46.280 --> 0:08:49.360 We went on this like once in a lifetime holiday. 0:08:49.840 --> 0:08:51.760 We decided to go to America. 0:08:52.600 --> 0:08:55.200 They planned to spend a few days in Chicago, then 0:08:55.240 --> 0:08:59.280 two weeks vacationing in Wisconsin and visiting extended family that 0:08:59.360 --> 0:09:02.320 lived there. Helen was worried about the strain and the 0:09:02.360 --> 0:09:03.560 trip would take on her mom. 0:09:04.280 --> 0:09:06.800 We went to the airport and she was in a 0:09:06.800 --> 0:09:09.680 wheelchair being wheeled to the aeroplane. 0:09:10.280 --> 0:09:12.559 But to Helen's surprise, we. 0:09:12.559 --> 0:09:15.480 Got to America and for two weeks she was just 0:09:15.679 --> 0:09:20.960 a normal mum. She was walking around. Literally, we had 0:09:21.000 --> 0:09:25.920 a non stop holiday. We did something every single day. 0:09:26.480 --> 0:09:32.240 We went to water shows, water parks. We got up 0:09:32.240 --> 0:09:34.360 in the morning and went to a diner, and then 0:09:34.480 --> 0:09:36.560 went and saw my cousins and then went out for 0:09:36.600 --> 0:09:41.200 the day and did something ridiculously American, and then we 0:09:41.400 --> 0:09:44.839 did something in the evening. It was just this incredible 0:09:44.920 --> 0:09:49.720 experience for me, like life changing. And what was the 0:09:49.760 --> 0:09:55.040 most amazing was that my parents were both well. My 0:09:55.120 --> 0:09:57.679 mom said the heat made my dad's chest better. 0:09:59.280 --> 0:10:02.800 The climate also seemed to help with her mom's chronic fatigue. 0:10:03.400 --> 0:10:06.960 I just thought, oh, my goodness, America has cured my parents. 0:10:07.400 --> 0:10:08.920 America has made them better. 0:10:10.080 --> 0:10:13.520 Helen was ecstatic. It was like she slipped into a 0:10:13.559 --> 0:10:17.320 better world where her parents were healthy and they were 0:10:17.360 --> 0:10:21.280 a normal, happy family. But the dream didn't last. 0:10:21.520 --> 0:10:24.000 We got on the plane to come home, and we 0:10:24.160 --> 0:10:26.120 got back to the UK and she was back in 0:10:26.160 --> 0:10:29.720 that wheelchair being wheeled back through the airport, as if 0:10:30.360 --> 0:10:35.480 the last two weeks hadn't happened. It was a huge 0:10:35.480 --> 0:10:39.680 moment for me. I saw what my life could be like. 0:10:41.679 --> 0:10:44.959 And I was like, why are we not going to America? 0:10:45.559 --> 0:10:47.760 Why are we not packing up and going because you 0:10:47.840 --> 0:10:51.000 could be well, you tell me all the time how 0:10:51.040 --> 0:10:54.640 you wish she could be. Well, we've got the answer. 0:10:55.600 --> 0:10:56.320 Let's just go. 0:10:58.920 --> 0:11:02.360 I prayed every night for my parents to be better. 0:11:03.280 --> 0:11:07.240 The idea that it was within gross was just like 0:11:08.120 --> 0:11:09.160 I couldn't understand. 0:11:34.480 --> 0:11:37.120 On a family trip to the US, Helen's mom, who 0:11:37.160 --> 0:11:41.200 was normally chronically ill and stuck in bed, experienced major 0:11:41.320 --> 0:11:44.760 relief from her symptoms. Her dad, who had serious heart 0:11:44.800 --> 0:11:49.240 and lung problems, was doing much better too. On their trip, 0:11:49.400 --> 0:11:52.560 both her parents had energy and they went on adventures 0:11:52.600 --> 0:11:57.320 together every day. Helen was overjoyed they had found a 0:11:57.360 --> 0:12:07.000 cure for her parents America, but when they got back 0:12:07.040 --> 0:12:11.040 to England, their symptoms became as debilitating as they were before. 0:12:11.679 --> 0:12:15.280 Helen wasn't ready to accept that this was their normal again. 0:12:19.080 --> 0:12:23.160 It was a huge moment in that I saw what 0:12:23.200 --> 0:12:27.120 my life could be like, and I was like, why 0:12:27.160 --> 0:12:29.720 are we not going to America? Why are we not 0:12:29.800 --> 0:12:32.840 packing up and going because you could be well, you 0:12:32.960 --> 0:12:36.240 tell me all the time how you wish she could be. Well, 0:12:37.200 --> 0:12:40.240 we've got the answer, Let's just go. 0:12:41.720 --> 0:12:43.960 But her parents didn't want to move to the US, 0:12:44.559 --> 0:12:47.679 so Helen channeled her energy into doing well in school 0:12:48.240 --> 0:12:49.559 so that she could have a life. 0:12:49.559 --> 0:12:53.160 Ever on, I did really well in my A levels 0:12:53.440 --> 0:12:56.520 and then off I went to university and I went 0:12:56.559 --> 0:13:01.280 to Nottingham, which it isn't even the top three cities 0:13:01.320 --> 0:13:05.280 in the UK. Yet I felt like I was in 0:13:05.320 --> 0:13:09.760 this enormous city that was totally overwhelming. I walked through 0:13:09.800 --> 0:13:12.280 ten and I didn't see anyone I knew. That was 0:13:12.320 --> 0:13:13.560 really shocking to me. 0:13:15.760 --> 0:13:19.120 Helen had spent her childhood in teenage years hyper focused 0:13:19.160 --> 0:13:21.960 on her parents' health, living in a town where she 0:13:22.040 --> 0:13:26.000 knew everyone. When she left for college, she was plunged 0:13:26.040 --> 0:13:27.760 into a completely foreign world. 0:13:28.200 --> 0:13:32.959 I did feel really lost. It was scary. It was 0:13:33.240 --> 0:13:38.840 obviously brilliant because I never thought i'd get away. The 0:13:38.960 --> 0:13:44.040 freedom was incredible. At the same time, I hadn't been 0:13:44.080 --> 0:13:47.160 given any life skills by my parents. 0:13:48.000 --> 0:13:52.080 Helen didn't have the same street smarts or life experiences 0:13:52.120 --> 0:13:55.240 as her peers, but she certainly knew how to take 0:13:55.280 --> 0:13:59.040 care of herself. She'd been doing it since she was seven. 0:13:59.400 --> 0:14:03.640 So it was a really steep learning curve. I have 0:14:03.800 --> 0:14:06.000 the skills to do it, and I had the confidence 0:14:06.040 --> 0:14:08.480 that I'd been doing this forever and that I could 0:14:08.520 --> 0:14:09.120 do it again. 0:14:09.920 --> 0:14:13.480 Sure enough, Helen found her stride at college, and during 0:14:13.480 --> 0:14:16.280 her first year there, she met a boy named Peter. 0:14:16.960 --> 0:14:20.800 I met Peter three friends. We used to meet up 0:14:21.000 --> 0:14:24.640 with another guy and another girl and just hang out. 0:14:25.000 --> 0:14:28.000 Peter would walk me home and we got chatting, and 0:14:28.040 --> 0:14:31.480 I found out that his dad had also had heart problems, 0:14:31.520 --> 0:14:35.280 and he just understood the situation that I was in 0:14:35.280 --> 0:14:38.200 in a way that no one else understood. 0:14:39.640 --> 0:14:42.680 Helen and Peter began to spend more and more time together. 0:14:43.040 --> 0:14:45.360 The connection between them was instant. 0:14:45.640 --> 0:14:49.720 We got together and we got engaged after six months, 0:14:50.120 --> 0:14:53.640 we got married twelve months later. It was all very whirlwind, 0:14:54.320 --> 0:14:56.840 but at twenty one, you feel like a proper grown up, 0:14:57.040 --> 0:14:59.040 so that's. 0:14:58.840 --> 0:15:02.680 What you do. But Eleanor was not welcoming to Peter. 0:15:03.440 --> 0:15:06.880 She was very mocking about my relationship, like, are you 0:15:06.960 --> 0:15:08.000 going to call your lover? 0:15:08.400 --> 0:15:09.480 Do you love him? 0:15:09.600 --> 0:15:14.400 Helen? Are you in love with him? There was no safeguarding. 0:15:14.880 --> 0:15:17.360 There was no sort of like, well hold on, let 0:15:17.400 --> 0:15:19.600 me check this person out and see what I think 0:15:19.640 --> 0:15:21.440 of them if you're going to marry them, and like 0:15:21.480 --> 0:15:23.800 you're going to marry them six months after you started 0:15:23.880 --> 0:15:28.120 dating them, Like that's actually ridiculous, you're twenty. My parents 0:15:28.160 --> 0:15:30.160 didn't do any of that. They were just like, oh great, 0:15:31.360 --> 0:15:32.600 let's arrange the wedding. 0:15:34.320 --> 0:15:38.840 At first, Helen struggled to accept that Peter actually wanted 0:15:38.840 --> 0:15:39.480 to be with her. 0:15:40.360 --> 0:15:43.720 I spent a long time thinking that I'd put on 0:15:43.760 --> 0:15:47.480 a mask when he met me, and that I tricked 0:15:47.560 --> 0:15:48.520 him into marrying me. 0:15:50.400 --> 0:15:54.600 Shortly after Helen and Peter got married, Helen's dad collapsed 0:15:54.840 --> 0:15:56.840 and had to be rushed to the hospital. 0:15:57.560 --> 0:16:00.840 His health declined significantly after that, so then he was 0:16:00.880 --> 0:16:05.880 on oxygen. The last two years of his life were 0:16:05.920 --> 0:16:11.080 a nightmare. He was just having heart attacks all the time. 0:16:11.840 --> 0:16:15.040 It would be like four am phone calls saying this 0:16:15.240 --> 0:16:19.080 is it, You've got to come. And I remember jumping 0:16:19.080 --> 0:16:22.160 in the car with my husband and rushing thinking are 0:16:22.160 --> 0:16:24.160 we going to make it? Are we going to make it? 0:16:27.160 --> 0:16:29.920 Her whole life, Helen had been afraid that her dad 0:16:30.000 --> 0:16:33.400 could die at any minute, but during those two years, 0:16:33.640 --> 0:16:36.800 the constant ham of worry grew into a fever pitch. 0:16:37.720 --> 0:16:41.200 I went into a real period of depression, really really 0:16:41.240 --> 0:16:45.360 struggled dealing with that situation. Me and my husband had 0:16:45.440 --> 0:16:49.040 visited one weekend. We got the phone call, then went 0:16:49.080 --> 0:16:52.760 straight upstairs to where he was in the ward. The 0:16:52.880 --> 0:16:56.200 nest said, I'm really sorry, but he's passed away, and 0:16:56.560 --> 0:17:00.000 my mum just collapsed to the floor and I don't 0:17:00.000 --> 0:17:03.440 I remember crying initially because it was all about looking 0:17:03.520 --> 0:17:06.600 after my mom and caring for her and making sure 0:17:06.640 --> 0:17:10.719 she was okay. I remember holding his hand and he 0:17:10.800 --> 0:17:16.080 was still warm. His eyes were open, and I was like, 0:17:16.280 --> 0:17:19.440 this is weird. His eyes are open. And my mom 0:17:19.480 --> 0:17:21.080 was so snappy with me and was like, well just 0:17:21.119 --> 0:17:24.359 close them then, and I got really upset. It just 0:17:24.400 --> 0:17:28.880 sort of finally hit me and I said, I don't 0:17:28.880 --> 0:17:32.560 want to leave without him, and my mom said, well, 0:17:32.600 --> 0:17:35.160 this is it, isn't it, Helen, he's dead. Of course 0:17:35.200 --> 0:17:37.080 he's not going to come with us. 0:17:38.880 --> 0:17:41.399 Eleanor had no room for her daughter's grief. 0:17:42.240 --> 0:17:47.359 This was her moment, and it wasn't about me. After 0:17:47.480 --> 0:17:50.639 his death, she used to say to me, it was 0:17:50.800 --> 0:17:55.520 just your dad, but it was my husband. So every 0:17:55.600 --> 0:17:59.720 single occasion that could possibly bring up those feelings for her, 0:18:00.640 --> 0:18:03.600 I would send her flowers, I would call I would 0:18:03.760 --> 0:18:07.640 really make a big deal of it. And for years, 0:18:08.320 --> 0:18:11.760 years and years, she didn't even acknowledge that Father's Day 0:18:11.840 --> 0:18:13.159 might be a bit difficult for me. 0:18:15.680 --> 0:18:19.080 As the years went on, Helen remained her mom's caretaker. 0:18:19.720 --> 0:18:22.439 Because she was my mom, and because I was an 0:18:22.440 --> 0:18:24.639 only child, it wasn't like I could just say, right, 0:18:24.680 --> 0:18:31.119 I'm married now Celia. I couldn't let her go. I 0:18:31.119 --> 0:18:34.600 felt very very responsible for her. We would have her 0:18:35.040 --> 0:18:39.879 to our house every Christmas and it would be really strained. 0:18:40.080 --> 0:18:44.800 I hated Christmas because Peter really really struggled with my 0:18:44.880 --> 0:18:50.480 mum's behavior. My mum would be attention seeking and difficult, 0:18:51.000 --> 0:18:54.600 and I felt like I just had to keep the peace. 0:18:56.920 --> 0:18:59.520 Helen and Peter had been trying for a baby and 0:19:00.200 --> 0:19:05.399 a difficult miscarriage. Finally Helen became pregnant, but the pregnancy 0:19:05.520 --> 0:19:06.879 was quickly overshadowed. 0:19:07.800 --> 0:19:11.160 At exactly the same time, my mum got a diagnosis 0:19:11.280 --> 0:19:19.119 of Parkinson's disease. The consultant called it mild parkinson Ism. 0:19:19.240 --> 0:19:23.600 Despite the early diagnosis, her mom's health was declining quickly. 0:19:24.160 --> 0:19:27.840 She was getting worse and worse, so she was getting 0:19:27.840 --> 0:19:32.640 more medication. She was going to these Parkinson's support groups. 0:19:33.119 --> 0:19:35.520 She wasn't interested in how my pregnancy was going. She 0:19:35.560 --> 0:19:39.720 wasn't interested in what scans I'd had, She wasn't interested 0:19:39.800 --> 0:19:43.000 in me thinking about baby names. She just wanted to 0:19:43.080 --> 0:19:44.720 talk about Parkinson's disease. 0:19:46.440 --> 0:19:50.840 Soon Eleanor required constant care and moved into a nursing home. 0:19:51.280 --> 0:19:56.000 She started having fools and it was happening so frequently 0:19:56.640 --> 0:19:59.600 that the paramedics were actually told on her notes not 0:19:59.680 --> 0:20:00.840 to take to a hospital. 0:20:02.720 --> 0:20:05.199 Helen tried to be there for her mom. It was 0:20:05.280 --> 0:20:08.480 hard to see her struggling in this way. She visited 0:20:08.480 --> 0:20:11.560 the nursing home often, and one day they had plans 0:20:11.600 --> 0:20:14.359 to go shopping in town together, so Helen went to 0:20:14.359 --> 0:20:17.240 go pick her mom up. When she got there, her 0:20:17.280 --> 0:20:20.280 mom was sitting on the couch and then she sort. 0:20:20.000 --> 0:20:28.880 Of pretended to fall. It was very slow motion, and 0:20:30.400 --> 0:20:32.600 when she got to the floor, she said, oh, my goodness, 0:20:32.640 --> 0:20:34.520 did you see that? I just fell off the sofa. 0:20:35.520 --> 0:20:41.000 And I was like, not really, and she said I 0:20:41.040 --> 0:20:42.800 need to go to bed. And I was like, okay, 0:20:42.880 --> 0:20:45.720 come on then, you know, i'll help you up. I'll 0:20:45.720 --> 0:20:49.119 put you to bed. And she said I can't walk, 0:20:49.560 --> 0:20:51.920 You'll have to carry me. And I said, well, i'll 0:20:51.920 --> 0:20:56.159 help you, but like I can't carry you, you know, 0:20:56.240 --> 0:21:02.440 come on, get up, and she sort of turned demonic. 0:21:04.320 --> 0:21:09.560 She was sort of crawling along the floor and saying, fine, oh, 0:21:09.800 --> 0:21:12.800 cruel there, then, is this what you want? Is this 0:21:12.880 --> 0:21:14.800 what you want from me? Lift a bitch? 0:21:19.440 --> 0:21:22.400 Her mom had never used a word like that before. 0:21:22.960 --> 0:21:24.080 And it shook Helen. 0:21:25.000 --> 0:21:28.600 It was kind of terrifying, so I ended up hiding 0:21:28.640 --> 0:21:32.160 in the kitchen, thinking what am I going to do. 0:21:34.400 --> 0:21:38.640 I tried calling Peter and he was like, just leave, 0:21:39.720 --> 0:21:41.280 but I didn't feel like I could leave. 0:21:42.280 --> 0:21:46.719 After that, Helen stopped visiting her husband. Peter supported her 0:21:46.800 --> 0:21:48.720 decision to pull back from her mother. 0:21:49.359 --> 0:21:52.000 We were having to kind of back off her more 0:21:52.080 --> 0:21:55.280 and more and we would just be like, Okay, she 0:21:55.320 --> 0:21:56.960 can't be around the children anymore. 0:21:57.720 --> 0:22:02.840 Eleanor's health was declining rapidly. Doctors were constantly scrambling to 0:22:02.880 --> 0:22:04.240 help her and find answers. 0:22:04.960 --> 0:22:08.879 She bound her hands up into fists so that she 0:22:08.920 --> 0:22:15.240 couldn't unclench them. She wasn't eating, she was just getting 0:22:15.240 --> 0:22:20.359 worse and worse. She was referred to a hospital where 0:22:20.359 --> 0:22:23.120 they did every test end of the sum They literally 0:22:23.160 --> 0:22:28.680 tested her for everything, and eventually they said that they 0:22:28.680 --> 0:22:31.840 had found nothing physically or mentally wrong with my mum, 0:22:32.400 --> 0:22:39.080 but she would die in the next few months. By 0:22:39.119 --> 0:22:42.880 that point, I'd spent three four years banging my head 0:22:42.880 --> 0:22:45.119 on a brick wall trying to get someone to listen 0:22:45.160 --> 0:22:49.000 to me, to say this isn't right, something's wrong, and 0:22:49.040 --> 0:22:51.720 I need you to find out what's going on, and 0:22:51.760 --> 0:22:54.600 they basically said to me, we've tested her for everything 0:22:54.760 --> 0:22:55.880 and we can't help. 0:22:57.760 --> 0:23:00.200 Doctors had run out of ways to help her mom, 0:23:00.520 --> 0:23:01.399 and Helen had to. 0:23:02.760 --> 0:23:04.919 I tried to stay in contact with her, but she 0:23:05.480 --> 0:23:09.639 didn't really want it. Obviously. There was a massive decision 0:23:10.000 --> 0:23:12.320 not to go and see her in her final months. 0:23:13.160 --> 0:23:17.320 I decided it was better this way. I mean, that's 0:23:17.359 --> 0:23:21.399 a horrible decision to make and not something I took lightly, 0:23:22.200 --> 0:23:24.840 but actually having contact with her was more damaging. 0:23:25.840 --> 0:23:29.080 It was painful for Helen not to visit. She still 0:23:29.160 --> 0:23:33.080 loved her mom very much. She got occasional updates from 0:23:33.119 --> 0:23:36.679 the medical team. One day, the call was different. 0:23:39.400 --> 0:23:42.640 I'd had this phone call a few days earlier saying 0:23:42.840 --> 0:23:46.480 your mom's got a mouth infection. I was like, okay, 0:23:47.160 --> 0:23:49.800 so will you let me know how that goes then, 0:23:49.960 --> 0:23:52.280 and like call me back in a few days, and 0:23:52.280 --> 0:23:55.880 they were like, well, yeah, it might not be that long. 0:23:57.600 --> 0:24:00.680 A few days later they rang me and they said, 0:24:00.760 --> 0:24:01.720 your mom's died. 0:24:05.600 --> 0:24:09.959 For a moment, everything stood still. Helen's mom had been 0:24:10.000 --> 0:24:13.719 the center of her attention for her entire life. Her 0:24:13.760 --> 0:24:17.040 mom's sickness had been the guiding force in every decision 0:24:17.119 --> 0:24:22.080 she made. And now it was all over, with her gone, 0:24:22.520 --> 0:24:26.760 everything was all mixed up. Nothing made sense, not even 0:24:26.840 --> 0:24:27.719 her own grief. 0:24:30.000 --> 0:24:33.399 It was a shock. It was a real shock because 0:24:33.440 --> 0:24:37.320 we were estranged. I think quite a few people thought 0:24:38.160 --> 0:24:42.880 I wouldn't grief, or perhaps I wouldn't feel sad about it. 0:24:42.880 --> 0:24:46.359 It's just such a complex grief. It isn't straightforward, it 0:24:46.400 --> 0:24:51.680 isn't normal. It was worse than my dad. My dad, 0:24:51.720 --> 0:24:56.000 I was sad, but it was really straightforward. I missed him, 0:24:56.280 --> 0:24:59.119 and I was sad that he was gone, whereas this 0:24:59.280 --> 0:25:00.720 was so much more or complex. 0:25:03.160 --> 0:25:06.040 Ever since she was a little girl, Helen used her 0:25:06.080 --> 0:25:08.479 writing as a tool to make sense of her messy 0:25:08.600 --> 0:25:09.679 and confusing world. 0:25:10.400 --> 0:25:13.120 That's a way of me making sense of things and 0:25:14.320 --> 0:25:17.160 getting things straight in my head. So it was kind 0:25:17.200 --> 0:25:21.000 of a natural reaction for me to write about what 0:25:21.040 --> 0:25:21.680 had happened. 0:25:22.480 --> 0:25:25.240 Helen began writing a book about her life with her mom, 0:25:25.520 --> 0:25:28.560