Hi. I’ve never written on a forum before and I may prattle on a bit. A lot of context but will try to get to the point.
I’m 26 and lost my mum 14th November 2022. My mum meant so much to me as she was also my grandmother who adopted me as a baby. Growing up it was always just the 3 of us as my older ‘siblings’ were nearly 30 years older than me.
At 16 I met the love of my life we’ve been together since and married with two amazing little girls (3& 4months).
However just as we found out I was pregnant with our first baby back in 2019 dad was diagnosed with dementia. So although pregnant my mum and I started helping him out more and with a little baby I planned to help as much as I could until I had to get a job. Mum and dad were reasonably independent and other than my mum’s encyclopaedia of health issues. but as a strong stubborn woman she never let anyone or anything hold her down.
As covid and lockdowns hit dad took a downward trajectory slowly his dementia got worse and by the middle of 2021 I was having to start putting plans in place of what ifs.
As time went on and life got back to normal I noticed both my parents were slowly getting worse and needing more and more help. Which with a toddler running around it wasn’t always easy. But we managed and we got through as we always do.
In early 2022 we found out we were expecting our second baby and initially we were overjoyed by the idea of us being blessed with another baby that we could love. Unfortunately within a couple of months that bubble burst as dad was starting to get moments of anxiety or anger and for those of you who know dementia, firstly it sucks, but second they were coming from nothing. Slowly they were increasing and mum was slowly starting to worry more and more about him as she didn’t know what to do. And with her starting to have more issues she started to become more and more panicked about every little thing.
Anyway. Come last August and I had to nip up into the nearest big town to get my windscreen fixed my sister had come to England with the idea of helping out with mum and dad as I was 9 months pregnant about to pop and her being here would enable me to have a couple of weeks with the new baby and our little family without having to worry about caring for my mum or dad. She’d come with me as my husband was terrified I’d go into labour or something while I was there. He’s a worrier.
Just over and hour after arriving we get a frantic call from mum saying dad had done something and she was in the floor. He hadn’t hit her or anything but he’d gotten so mad mum ended up having what we thought was a panic attack and basically fainting.
It was all a bit of a mess but dad calmed down like nothing had happened mum and I were left rather shaken. She didn’t want to get checked out she said she was fine she just panicked. The next morning my waters broke nearly 2 weeks early which can happen but the stress of the previous day was deemed the cause.
The next month went on the pair of them stopped doing things they had always done. Mum was forgetting how to use the microwave. I was having to spend my whole day there before going back up in the evening to do dinner then again later to dish out medication and bed time. We were starting to think maybe mum was getting the dementia dad had or was is just being around dad so much was sending her a little loopy.
Either way. As September was fast flying in my husband, girls and myself were offered a slightly bigger flat, my husband was having to do more than he had ever had to do as I just didn’t have the time to prep for the move with a brand new baby and parents who were becoming more and more needing of me. I was having to drag my brand new baby around everywhere even at 9 at night because she wouldn’t settle for my husband.
The morning we were due to start moving furniture into the new flat (we were only moving up a couple of floors). I’d had a bad feeling and husband and I went running up to mum and dads house to find mum hadn’t slept and was in a lot of pain like heartburn she said. So paramedics came out and begged her to come just get checked out. She never wanted to go into hospital because she feared like her mother she wouldn’t come back. They said a couple of hours then she could come home.
My dad little baby and I followed her up to the hospital an hour away because our normal hospital was on a divert. By the time we found the place and found mum they had run a string of tests and it was concluded that in she’d had a heart attack in the last couple of months and the pain she was having was because she’d not seen anyone.
Fast forward 4 weeks an echo showing barely anything at all, 2 covid wards which she managed to stay negative on and a bronchiectasis flare up, if the chest infection wasn’t treated quickly she’d develop pneumonia (important later). So much for a couple of hours.
Either way. By the time she was released she wasn’t the same person who went in. She no longer was herself. She didn’t speak much and she had to be reminded to do everything. Suddenly my mum who although had her problems was an independent as she could be was now housebound and barely knowing what to do with her self.
Home help started to come in for both mum and dad. With the idea of me not having to be constantly at the house. The hope was as Mum regained her strength at home she’d become more independent and with help from inside a good routine would form and we’d all be able to work together to keep mum and dad at home and together.
Mum lasted 2 weeks before being rushed back to hospital. You see. When she was discharged they took her off her antibiotic that we were told had to be in the house at all times so when we heard the distinct crackle she could start on them immediately. That was one of my most important jobs. Hearing the crackle and starting the meds. Within 5 days of her being released I heard a crackle. I asked my sister to double check the list while I grabbed a box from the cupboard like I’d done a thousand times. My sister said stop!!! They’ve taken her off it So we called the hospital to check but they said we’re dealing with her heart not her lungs we were to speak to her gp about this issue. So we called the gp and they said well she was just in hospital they had control over her meds. The hospital didn’t pick up again as it was late Friday afternoon and then it was the weekend. We said ok. 2 days we’ll keep a close watch.
By Sunday she was in bed hallucinating seeing her parents and brothers who had passed before her. We rang 111 and they sent a doctor out who thought it may be uti causing this sudden change. We asked to get a sample to give gps on Monday and was given antibiotics to start right away. We asked about her chest and they said with how she was presenting. It wouldn’t be. With everything else going on you nod and say okay. If I could turn the clock back. I would. I’d beg her to listen to her chest.
Tuesday mum still wasn’t right. Nothing had changed apart from she was losing touch with reality more. She didn’t know me or my sister. But she knew she loved us. So my sister called again. Was told another sample would be needed as the last one wasn’t showing anything.
Wednesday the doctors called my sister saying mum would need more uti medicine as it sounded like it just wasn’t shifting. My sister was told to head to the surgery to collect the slip whereby she seen the nurse who that morning had taken the sample to be tested. Said hmm it’s clear as day absolutely nothing on it. This screamed suspect so we called them back saying we need to speak to the gp to ensure he’s definitely wanting her on this. He called back Thursday evening to say he knew what he was doing he didn’t need to see mum and basically stop questioning him and do what we are told.
Friday evening an Abundance was called she was in so much pain all over she couldn’t be touched we got her into bed and she cried for her mother. We honesty thought she was gonna go that night.
Paramedics took one look at her listened to her chest and jumped into motion. Her lungs sounded so crackly they couldn’t hear much else. They jumped her in with my sister and flew to the hospital where X-rays revealed severe pneumonia both sides covering both lungs. That was within 7 days of first hearing that little crackle.
Doctors did everything for mum pumping her with different cocktails trying to get on top of the pneumonia and on Tuesday they thought they were making progress. Wednesday saw a covid positive patient on the ward and the last day I seen her kinda conscious.
The nurses advised me Thursday not to come as I had a young baby. But not to worry as she was stable. We went over heath directives just in case. Telling me it was just for the paperwork. I should have known then.
Friday morning we got the call we were dreading. Everything dropped away in the night, everything they had tried to do wasn’t working. They told us to rush there as she might not make the day and the palliative care team would make her as comfortable as possible.
We got there and spent 3 days holding her hand. She never regained consciousness but she knew we were there. And hold out for each one of us. Even though she couldn’t talk any more.
Sunday 13th November 2022 I went home in the evening to see my 3 year old who was really struggling without me. I was barely gone 2 hours when the call to say she was fading and get back hit. Thankfully this hospital was 20 minutes away. I got back and all was calm. Dad was asleep holding her one side and my sister was swearing that her breathing hadn’t been the way it currently was. So with that I decided I wasn’t going to sleep. I would stay up with her night and day.
There was still a small hope deep down that she just needed rest and she’d wake up tell us we were being silly and she’d be herself again. So I stayed awake. While my sister and my dad slept. I sang songs i told her about primary school visits and how the baby was getting heavy. I held her hand and stroked her leg all night and she stayed calm and restful.
5am came and with that an urge to use the loo. As a mum we can often forget or hold on as little ones come before bladders haha. But by now I was desperate. So I told mama I was waking my sister up so she wouldn’t be alone. I went and took a few minutes to myself. Washing the sleep off my face and praying that maybe a good and peaceful night would mean they were wrong.
Coming out of the loo I looked across to my sister who was doing something. But something wasn’t right. It took me getting back over to realise. Mama wasn’t breathing. The earth seemed to stop and my whole body turned to lead. We pressed the button and I ran to the hall begging someone to help. But the directive was in place. No CPR. Nothing that would break her body more.
My world changed forever that day. I’m no longer who i was. We had to get the funeral plans sorted while reminding dad every day what happened to mum keeping him in routine keeping the girls in routine trying to find a way to keep myself from shutting down. My husband telling me i need to let it out as I’ve turned emotionless. Something I’ve never been. But I’m truth I just feel nothing. I know I love my girls but really it’s just a numb sensation my husband holds me and tells me he’s here for me. I know the love we have. But I can’t feel it right now.
To put the star in the tree. Dad ended up heading to restbite care just before Christmas they asked could he come straight away. He agreed and one day he is happy enough the next he’s begging me to take him home. I don’t know what’s more draining. Trying to look after him myself with the girls. Or this current scenario. They are both impossible situations. And I think I’ve switched my emotions off because otherwise after all this. I’m not sure what to do with myself anymore. I don’t know what to do with my girls. They are fed and cared for but i know I could be doing so much more. I just don’t know how anymore.
So after writing this whole novella the reason for writing it. What do i Do now? I spent my whole adult life caring for the 2 of the people who meant the Most to me (alongside my husband and girls). How do I take the next steps into this new year new era? How do i feel my family’s love and happiness again? How do I be me again? Because I feel like she left that night along with mama. I’m so lost.