Hi Everyone,
Firstly, just a HUGE thank you for being so patient with me. I am going to explain everything in this post hopefully. But, if you do have any questions, just drop me a comment and i will reply.
Let's rewind 5 years ago...
I was 23 years old. Living in a family home with my 3 sister's and my dad. We all had jobs, but my dad was quite elderly, and had some serious illnesses, so was retired and my sister's and i would care for him. My dad had had heart failure ever since i can remember, and in 1998 had a quadruple bypass. It added an extra 15 years onto his life, but things were always difficult for him. he'd struggle to get places without aides and had different sprays and LOTS of tablets for his angina. He had suffered a massive stroke an a flight once, and was paralysed on the left hand side of his body for about 6-8 months. He had made a partial recovery, and was damn certain he wanted to be out of hospital for my nephew's birthday. He was adamant he was fine, but after the stroke, he was never himself. things weren't back to normal. But, we were coping.
We were coping. After a few years like this, living in the house, working, me joining a theatre company when i was 17, my little sister (5 years younger than me) was still in school, my older sister's working part-time, we were given the sad news that my dad had '
developed' (i say this loosely, as i'm not sure exactly how this illness comes about, or why, i just know it progressively got worse!) an illness called
Dementia with lewy bodies. It is a degenerative illness that affects the brain and motor functions. It is similar to Parkinson's disease in the fact that they share similar symptoms; shaking of the body, slurring speech- and is quite often misdiagnosed.
So, my dad was diagnosed with DLB (Dementia with Lewy Bodies) and first of all, as stated above, he was misdiagnosed and given medication for Parkinson's disease. He had minor shaking of the body, mainly hands, arms and legs, and found it difficult to walk. The medication wasn't helping obviously, and the tremors became worse, his memory and cognitive system started slowing down. he was in and out of hospital, being poked and prodded. It wasn't until we had a talk with a DLB specialist that we found out what he had. Naturally, he was distraught, we all were. We done some research into the horrible disease that was taking over my dad, and we were horrified at the true extent at what pace it ravages the body, the mind.
We were getting on with life, as you must in times like this. Yes, it was becoming more difficult for us as we were constantly tired, but we knew we would be okay. As the weeks and months went by, his symptoms were becoming more apparent- he would have issues with his memory, and mental abilities. There would be days when he would be okay, and other days when he wouldn't know who we were- to the days that were just down right hard, he'd get up in the middle of the night and want to go out, he'd refuse food - NEVER a cup of tea, he'd always fit that it, but his food became something of a back burner, if he didn't refuse it, his palette became less substantial and would be limited.
He also started to develop hallucinations. This was quite early on, and it was scary.
As before, we didn't know what would happen day-to-day, one day he'd be fine, the next it was like it wasn't him.
He developed movement problems, which eventually lead him to become bed ridden and needed around the clock care. Whereas before this, in the early stages of his condition, we refused ANY type of help, but as we were all working, and he couldn't care for himself when we weren't home, we signed up with a care package that was provided by the NHS. They'd come to us twice a day, and help us with changing his bed, washing him, feeding him. He must have knew deep down, how poorly he was, as he accepted the help. This coming from a man who was so STUBBORN he wouldn't go to hospital for nothing. The stroke incident- he only went to the hospital because he had fallen out of bed and couldn't get up. He was still refusing to go to hospital, but we called paramedics anyway. It wasn't until they assessed him and said his left pupil had blown and he couldn't move any limbs on the left side of his body, his face was drooped, that he agreed to go in. He was stubborn.
But i'm digressing. Anyway, Back to the symptoms, after the loss of movement and becoming bed ridden, he'd shout out quite a lot, not only from confusion but also from agitation. He'd sleep a lot during the day but have restless nights, and obviously felt tired. His memory loss became worse. and eventually it lead to myself having Lasting Power of Attorney- both financially, and Health and Wellbeing. It was a difficult thing for a 22 year old to take on, but with my head held high, my sister's and I helped each other out and we came through the difficult times.
I had started my blog and filming a few months prior to this, my dad had just got sick and i found it as a way out. I'd watch people like Zoella, Fleur De Force, Jenna Marbles and the like, and i'd dream of doing that! being them, i wanted to make people laugh. I wanted to vlog, do hauls, lifestyle posts and daily blogs. But it was difficult, fitting everything in. The blogging was few and far between. There wasn't enough hours in the day, but i wouldn't have it any other way. My dad needed us. That was the most important thing. I was still blogging, but very rarely.
As the symptoms quickly progressed, he'd only eat 2/3 different things. This was mashed potato, banana angel delight or his nutrient rich yoghurts. none of which satiated him. Again, never without a cup of tea though- he'd drink it freezing cold too!
One morning, after carers had been, we'd heard my dad shouting from upstairs. My sister's and I went up to his room and saw that he had vomitted. It weren't 'normal', like regurgitated food or anything. No. this was like tar. It was black and thick. So, another trip up to the hospital. After countless tests, and hours of being poked and prodded, we were sent home with the diagnosis of ulcer. We had our suspicions, but didn't think anymore of it.
This kept happening, he'd vomit this black tar like substance and again, we'd be sent home with the diagnosis of 'Ulcer'. After about five or six trips back and forth, countless blood tests, and hours of him feeling vulnerable, helpless- we again got the same diagnosis. This time, my older sister and I, DEMANDED a second opinion. We were asked why, and as we'd mentioned that i had LPA and could make decisions on his behalf, we got very lucky and spoke to the general surgeon consultant. Not everybody gets to speak to this guy. We just wanted answers. He was quite forthcoming with what he said, and we were quite shocked. So, he asked what the problem was and after us ranting stating that we were sick of him just being sent home all the time, with the same diagnosis, and we felt he was just treated like a spare part, we explained that i thought it wasn't an ulcer as that is usually fresh blood. Not blood that was in stomach acid for a while, turning it a blackish colour. He quickly stopped us and said a few words' "haven't you been told?", naturally we were up in the air and asked "what?" it was then that the bombshell hit...
STOMACH CANCER!!
and because of how advanced it was, and his age, there was nothing the could do. They had found out he had stomach cancer from a few test they'd performed months prior to this meeting, and one of them was a camera down his throat and into his stomach. He barely could handle that. So any other operation or procedure to remove the cancer, he would not pull through. He was already so frail.
He was sent home under Macmillan Nurses and under palliative care. The prognosis was bleak. We were told 3-4 weeks max. The Macmillan nurses were great. Within 1 hour of him being sent home, they were at the door, giving us his medication, offering support, when they could. We had had him downstairs with a bed in the lounge, one of us always with him. Constantly by his side. We'd place him on the portable toilet, feed him and keep him warm- but didn't want to interfere with him too much. Just keep him comfortable.
We had to provide him with Oramorph, an oral morphine to ease his pain. And this was difficult, due to the illness, he had lost the ability to swallow, so it would go down very slowly, or he'd dribble it out. We were constantly on tenterhooks, and was always tired. But would have visitors: usually family we've called to visit him before the inevitable happened. We were anticipating it; but didn't expect what happened next.
So after the doctor had been down, and had saw and assessed my dad one final time, we were then told 1 week max. We were so upset that this was happening- not to us, but to our dad. A man once so independent, a man full of dignity and pride- to be helpless, to be vulnerable like this. It wasn't fair.
We got through he first two days by having close family over. They'd sit on his bedside hold his hand, talk to him. On the third day, my dad's sister's came over- obviously bursting into tears, screaming as soon as they saw him. But we didn't want him to be looked on as a freak show. Not that we thought anyone saw him like that, but we didn't want him to be like an exhibition, that you come and admire for a few minutes and then go. we didn't like him on display like that. But he'd have been happy that the most important people were there.
The third day, a few hours later, one of my older sister's (whom had given birth 5 days prior!) had came over with her husband and our other nephew. Naturally, to see her father. The day continued, and it was just a blur. can't really remember the morning of that day- 6th November 2013.
He started making this horrible gasping sound, and we thought it was because he had difficulty swallowing. We'd sit him up, thinking it would go- nothing would help. It wasn't until we'd called the emergency care line that we realised what it was, it was cheyne-stokes. The horrible raspy breathing pattern you hear when someone is dying.
This stopped and i went over and screamed that he'd stopped breathing and the air went thick. He had passed away. His eyes still looking at me, as he inevitably passed with his eyes open. Our world had ended.
Then the usual happened- he was taken away by the funeral home. And we had to organise his funeral, carry on as normal. But it wasn't normal, one of our parents had just died.
Our mum was an angel. She helped us through these passed few years as much as she could. Coming over when he'd 'play up', an episode he'd have where he wouldn't listen to anybody but our mum. Even feeding time, he often wouldn't feed for us, but would eat the banana angel delight when my mum was called down.
She was a saint. Couldn't have asked for anything else.
The days were flying by, we'd visited him in the funeral home, saw him one last time before he was cremated.
People rallied around us, offering support and comfort as they knew how. Offerings of food, comfort and kindness.
But we didn't know what to do, he was gone and we were living a three bedroom house that we had been brought up in, had to keep that going. work, pay for funeral costs, sort out last will and testament... people go through this everyday, but we definitely hated it, and didn't want to have to go through this again anytime soon.
Our lives had to carry on. we had to work, support each other financially and emotionally. i just didn't feel like blogging or uploading youtube videos anymore. I was a novice to it anyway, and wanted to let you guys into my life. but it took a permanent back seat for 5 years, but now, on the 5th year of his death, i am ready to start again... and do this full time.
We have a family holiday around the corner, to a place in North Wales we always used to go as kids. It's a holiday park, but we love it. :)
I will keep you updated as much as i can over the next 10 days!!
thank you so much for reading, and as always, take care!
Kimmy
XOXO
