I wanted to share my experiences of being an unpaid carer, I can imagine I'm not the only person who has given up their job to look after their sick parents, then become disabled doing so. I hope by writing and sharing this to be of some help or comfort to those in a similar situation, even if only 1 person reads this, I hope to bring them some sort of comfort and hope to know that they are not alone. So, I was working in a factory packing wound dressings and inspecting colostomy bags, i enjoyed my job but it was a bit of a pain in the bum when the place became like a little gossiping village, it's always best to keep yourself to yourself, get your head down and work, don't bring your work home with you and If you aren't happy, find a job that does make you happy. So, anyway, I wish I'd of took this advice and earned from my crafting sooner, but at least I'm making a go of it now!
Rewind, I'm packing medical products, my dad had been in ill health after retiring, he was a painter and decorator by trade. Several months after he retired, one of his sister in laws asked if he could decorate their front room, unfortunately, he fell from the step ladder, felt unwell after doing so and in the early hours of the next morning, he suffered from several strokes. It was because of being in hospital, they found there was something further wrong with him, and after 3 trips to hospitals in london (as this was the nearest place that had the diagnostic equipment and facilites to diagnose him) they found he had a cancer called mutiple myeloma. It was a lot of traveling for him as we lived in a little industrial town called Ellesmere Port, it's in-between Liverpool and Chester. Mutiple myeloma cells under a microscope look like squashed purple berries, they are a para protien that forms in the bone marrow of people with this cancer, and when they are at their worst, they like to munch on the kidneys causing kidney failure, so most if not all have to have dialisys treatment, basically, a very nasty cancer and not nice to see my father suffering from that treatable, but not curable disease.
My mother had been in ill health for several years since the loss of her father, mentally she could not cope with it and was first diagnosed with bipolar disorder and later paranoid schitzophrenia. She denied she had anything wrong with her and would be adamant that she was psychic, the only way she could help herself was to talk about her symptoms, that way, she could of been given the correct medication, but over the years, gradually she had more and more episodes, and the more she had, the less of a life I had. Now this is not meant in anyway to sound like oh poor me as I wasn't the one who was believing there was someone living in my head, controlling everything i do and say, being able to kill people and believing that food and drink was poisoned. Please, if anyone reading this is suffering from any of these symptoms, please for your own health do talk to a GP, they can help you I promise, that's easy for me to say I know but they will help you. So, I couldn't see, hear or smell the things my mother could but it affected my life also and my dads, it made us uneasy and we only felt safe when she was sectioned in hospital, my poor sweet dad believed she would get better and be back to has normal as possible, kind and caring generous wife, but she was never the same ever again sadly. In wedding vows they say to have and to hold in sickness and in health and dad certainly stuck to them, any other man would of gone sod this and I would not of blamed him one bit, but he truely loved her right from day one and until the end, it's so bittersweet how ill they both were but they are both gone, because they don't have to suffer anymore, the cancer has gone from them both forever now, of course I would rather have them both around, I was in floods of tears when I passed my theory test on the 3rd attempt, (3rd time lucky!) because on the 1st and 2nd attempt my dad had been there to be the 1st person I phoned to let know how I'd done, I love to think somehow he knows, and also if he was able to see me doing well in my lessons, I know he would be proud. One of my main reasons for learning was to be able to take him to hospitals for treatments myself. We had to use patient transport, a government and NHS service which can be extremely unreliable in the way that he would sometimes be waiting 3+ hours to get home from having dialisys, and if anyone who is reading this who recieves this treatment will know first hand how extremely knackering it is. The patient treatment was good to have, but sadly the service was in need of improvement, I start to feel a rage for the UK government while typing this, but will keep the politics aside for now, maybe in another blog!
So, I had previously talked about my mothers health, she started to become more unwell physically in early 2014 and had a TIA, otherwise known as a mini stroke. She got admitted to hospital and they found she had womb cancer, it was really bonkers how the cancer itself was described as being contained with in the womb so hadn't spread, therefore, she didn't need to have chemo, but she would have to have a hysterectomy, she was very lucky in the way it had been contained and wouldn't spread, but sad she had this nasty disease within her. Hysterectomies these days are different from back in the day when you could tell when a woman had had one as she was stooped over, it's done with keyhole surgery nowadays, but, because a lot of your insides are being taken away, you still have to rest up and take it easy for a few months after. Anyway, this is when my caring role began, no one to help them both, no family or friends who would, so I took on the role of home maker, i did everyone's meals, organised medication, did the shopping, and in all honesty, with no disrespect to my parents, I became the parent for them, like a role reversal, it's a bloody hard job, you have zero social life, loose lots of friends due to the caring role, and the person you are caring for, or in my case persons, their health comes before yours no matter what, even though your own GP, social workers and carers charities tell you constantly 'please look after yourself, it's very important', it never happens! It was a 24 hour job, you become an expert at phoning for an ambulance and can pronounce crazy sounding medications as you have to deal with doctors and nurses and prescriptions.
My mum got to the point where she was only able to move around the house with the aid of a zimmer frame, she was only 64 which is so young to be like that, she had also fell and broke her arm, the elbow joint was completely broke and had to be rebuilt, her left arm and hand was never the same again, and she deteroiated more and more to the point where, for her own safety and my dad's and myself peace of mind to be put into a home, she wasn't long there really and developed parkinsonisms and dementia, she had mutiple strokes and died having a massive stroke. Also, they rekoned she had cancer right through her body. Dad and me went to see her about a month before she died, we didn't recognise her, she had tiny little arms and legs, no chest and was just lying there helpless and her front teeth were sticking out so far and she had her mouth open constantly, in the background, there was a radio playing by her side, I recall it being smooth radio and it was playing 70's pop music, heartbreaking she didn't even know we were there, dad tried to talk to her saying it's me, the Welsh man, but couldn't even make eye contact, whatever was in her head was being so vile that day that it must of been so comforting when she took her last breath not to have to deal with it anymore, over the years there is so many horrible memories, ones I'd rather forget but i've done the right thing in getting help and counceling, otherwise who knows what kind of state I would be in. She used to believe that I was going to be injected with a deadly dose of heroin from her brother so hid me away in the little shop down the road, the woman was friends with mother and so believed everything she was saying, I explained to the woman what I knew, which wasn't much and how last time she had a bad episode, she was found with just a pair of knickers on, holding some towels and crying her eyes out, walking along the motorway. The police found her and she said in the towels was a dead baby that my dad had beaten out of her and that I had also been murdered. We had police officers knocking on the door and this was at 6am, I could hear dad struggling and a knock on my bed room door, a police officer asking was I OK and was I hurt or injured in any way, I opened my door and they looked relieved, no wonder if they were expecting to see a murdered 22 year old who had been raped also, so downstairs, dad was in handcuffs with a police officer holding his head against the wall, they let him go once i 'd explained my mum had previously been sectioned twice, and all the stuff that was whirling in my head, my dad being accused of raping and murdering me, the raping and murdering mother and kicking a baby out of her, now put it this way, my father was in no way violent, unless given a reason to be where he was in a situation to defend himself, but not in the ways mother was saying, what the heck was going on in her head to make her believe all this, it was so dramatic and stomach churning ,like something out of a movie or a tv soap opera! it didn't stop there either. I came home one day to find the house trashed. she had turned my room upside down and she explained that the whole house had drugs planted everywhere in it and the police where on their way to find it, of course they were not, but it had certainly looked like they already been and gone by the state of it! She had cut slits in the eyes in all the paintings around the house, which brings me to another time she was sectioned, probably the most horrible time. I was locked out the house and was in the neighbours for my own safety, could hear her screaming and shouting from in the house! I followed the correct procedure to get her seen by someone, which involves calling a mental health team, being seen by a GP, then getting her to hospital to be seen by a Psychiatrist in a&e then being put in the hospital and sectioned, there's a lot more red tape to it than that but that's the most easiest way of explaining it! My dad was working away at this point somewhere in the country, so it ended up being done the most brutal and saddest way, because I was locked out, the police had to get in by forcing the door open by breaking down the door, if you can imagine a scared, mentally ill woman inside there scared to death with who knows what's going on in her head, it seems cruel and nasty, but it's the only thing they could do sadly. 2 WPC's and 2 male police entered the property, and while they were in there, my mother spat in the face on one of the WPC's and punched the other one in an attempt to get away, she soiled herself and also had urinated all over the hall, yours truely had a lot of work to do when I had to go back in there! So, quite a heart breaking site to see was occuring when they got her out of the property, my mother being led out in hand cuffs, and then being put into the back of a police car, to be taken straight to the mental health services hospital, not a sight I ever thought I would see! I have lost count the number of times she was sectioned and the crazy, and horrible stuff that happened along the way, why dad and me never disapeared off I don't know why, but we should of done, anyone else would of!
Going back to talking about my caring role, in march 2015, my life was about to change for the worse. I was fit, healthy and strong and able to lift mum and dad, and push them around in wheelchairs. I was visiting a friend in a part of town I had not been before. I was going back home so went to get the bus back home. Unsure of which side of the road to stand on, i crossed the road, and a car came out of nowhere and smacked into me, sending me flying onto the bonnet, my head smashed into a side light and then I went smack on my left side onto the road. They didn't do any x-rays on me in the hospital, they just sewed my head up, not thorough at all, neither was my GP, it wasn't until I went to see a private physio that i found out my back, leg and neck were quite badly damaged, in that time over a year, I struggled to continue with my caring role, lifting mother and pushing her and dad in their wheelchairs, I had done un-repairable damage to my back. i didn't trust my GP anymore and changed my surgery to a different local one, and my new GP has looked after me much better.
My life has changed so much due to being an unpaid carer, and I want to tell other unpaid carers a few things:
1: please please please do look after your own health, you are important, and if your health suffers, you will struggle to look after someone.
2: It is ok to let friends and family help, if you are lucky enough to have friends and family, you deserve a break and a holiday, and if you do go on holiday, it's natural to get concerned is the person ok while I'm not there, I completely understand you have a routine and have things a certain way, and someone else coming in will do it differently to you, just please enjoy your break away as much as you can.
3: It is completely ok to be angry and feel resentment towards the person you are caring for, because it is frustrating to be doing things for that person that they are unable to do anymore, that's a natural feeling, if you have felt that way, write down your feelings in a diary, or please speak to someone in the links I will provide below.
4: help is available if you have no one to turn to, again I have links below which will hopefully be of help to you, you are not alone.
5: should you be suffering from any of the diseases or illnessses I have talked about please do seek help if you have not already, links below for you too, and to you, it's ok to feel resentment towards your carer, as I have found, it was a role reversal of parental duties where I ended up being the parent, that itself is frustrating for the person being cared for, they start to feel useless, but it's not you, it's your illness, carers, don't forget that either!
for those in the UK who are unpaid carers, these sites are of great help:
https://www.carersuk.org/help-and-advice/get-support?gclid=CjwKCAjw4avaBRBPEiwA_ZetYpoInOWOgNjMDy4dqSl05XTAvMMY0OjNO7KtI8ICpz4sy_O2jWIDmRoCHPkQAvD_BwE
http://www.carerstrust4all.org.uk/
If you need a break away, even if it's just for an hour or two, these people are wonderful:
https://makingspace.co.uk/
For those carers overseas:
https://www.caregiving.org/
For those reading this that are suffering with mental health, pease speak to someone, these are great, I wish you best of health:
https://www.mind.org.uk/about-us/
If you or anyone you know suffers, or has suffered from myeloma, please visit this site:
https://www.myeloma.org.uk/?gclid=CjwKCAjw4avaBRBPEiwA_ZetYg4BUa-9LeYr-hMKDjilzYKxVPxaAuILMZhZ4wCmrASW-x-qe5YknxoCIboQAvD_BwE
and, in general the people to talk to should yourself or a loved one is fighting cancer:
https://www.macmillan.org.uk/?gclid=CjwKCAjw4avaBRBPEiwA_ZetYiHC2esQdkoW3oI2SY9-jNhh_dMyNy79gI07HHBpEwiYO5QdPE6oLhoC8AIQAvD_BwE&gclsrc=aw.ds
Best of health to all that have read this, I hope it has in someway helped, or in general it was good awareness to read. Best of health to everyone, and lots of happiness.
Netty \m/
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