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Long time Carer, first time poster! - Carers UK Forum

Long time Carer, first time poster!

Tell us a bit about yourself here.
Hi, I'm Saoirse, I'm 47 y/o, single, no kids, and I live in Ireland. I've been a Carer for ooh 15 years now.

Initially I was Caring for both of my parents, my father had a heart condition, and angina. He suffered several heart attacks over the years, and the one he had about 15 years ago debilitated him badly. He had a pacemaker fitted and had 4 or 5 heart attacks after that. He also had arthritis in his hips and shoulders, he'd had an accident when I was about 4 y/o that left him partially disabled (he was able to walk and look after himself, but he needed a stick to walk about). Over the years that I was Caring for him, he went from a stick, to crutches, to a zimmer and finally into a wheelchair. He started to go blind [macular degeneration] and deaf [a 'war wound' from WWII], and on top of that, he developed a form of Dementia.

He had umpteen other things wrong with him, a bout of emphysema as a child left one of his lungs badly damaged and about 25 years ago he had a kidney removed... It was easier to tell you what was right with him!!

My Mother has always been what you might call "difficult", she's a drama mama who gets hysterical at the slightest thing (so the family had to walk on eggshells around her at all times to avoid a hissy fit), and had OCD, and had all these other quirks - like if you went to the toilet, she'd demand to know where you were going, when you came back she'd demand to know where you'd been, when you told her "I said I was going to the bathroom" she'd claim it'd taken you an awfully long time.
She'd take a strop at anyone and everyone for the slightest thing, and was a very cruel parent to have. When I was around 9 y/o, she went into my room one day when I was at school and put all of my toys into a bag and gave them to a woman down the street because "her daughters are much nicer children than you are" as a punishment for not making my bed before I'd gone to school...

Around 15 years ago, she fell badly coming in the back door of their house. Then she fell when she was in town. Then she fell again when she was in town. Instead of going to the doctor, she just stopped going down town as it was "too embarrassing now" as "everyone would presume she was drunk"... She did eventually go to the doctor and underwent several tests and procedures.

During that time I took over doing their shopping, then I had to start cooking their meals, then eventually bit by bit I became their full-time Carer.

In Ireland you get Carer's Allowance which involves filling out a huge form that the doctor has to sign and stamp and fill out a medical report and the person you are caring for has to sign it. I got the form filled out and Mother refused to sign it. Can't send it without a signature, and after a while the date on the medical report was too old (IMO) for me to send it. I tried several times and after two years and a stern talking to from Dad, she finally signed the form.

I sent it away and in due course got a letter telling me I was to be paid Carer's Allowance from <date> of <IRE£amount> per week.

What it didn't say was that for some reason I was only being paid for my Dad, and not for my Mother. I didn't realise this and carried on regardless until someone pointed out that you get X amount for one caree and Y for two carees. I tried to find out why I wasn't being paid the "two people rate", but no one could tell me. All they would do was give me another form - and of course Mommie Dearest refused to sign it.

Just over 2 years ago my father passed away. Instead of leaving my mother to get on with it, I stayed (I couldn't really afford to just leave home, and at 45 y/o, with no relevant work experience, or qualifications, and a bad back I didn't fancy my chances trying to find a well paid job!). MD then decided she would sign the form for me. So gawd help me I stayed.

About 9 months after Dad died, she woke up one morning in a state of confusion. I instantly recognised that she had Dementia (from previous experience with my Dad), so I assumed she'd had a TIA in the middle of the night. The doctor didn't think so (she behaved herself in front of him), a second doctor listened to me and got her an appointment at the geriatrician.

We went to that and the doctor there gave her a cognition test that she basically failed completely. She then had a CT scan, then we went back for the follow up and saw the geriatrician proper (as opposed to one of his minions) and I found out something that I'd never been told before. Years ago MD saw this doctor about her falling and one of the tests had shown fluid on her brain and they'd attempted to put in a shunt, which hadn't worked.

And she had been diagnosed with something called Normal Pressure Hydrocephalus. I had to look that up online, and discovered that it causes loss of motor functions (the falling over) and loss of cognitive function (the 'dementia')

She has been persuaded by a nurse to go to Day Care once a week and Respite every two months. I should have had both parents going to Day Care and Respite for all the years, but when it was suggested to them, MD said "Oh no, my husband wouldn't want to do that" and the nurse left it at that - that nurse was a pain in the rear, she wouldn't do anything, give you anything, or suggest anything. She flat out refused to let me have a home help as I have two brothers. Who were both living in the UK at the time(!)

There's more but I've bored you all quite enough for now!

I've been using the internet since the early 1990s, so I'll find my way around no bother! Image
Hi Saoirse and welcome Image
Quite a few on here are in similar situations to you, so if you need to know anything, just ask.
Here we only get CA for one person, regardless of how many we actually look after!
Hi,
Just wanted to say Hello , and Image
Hi,and welcome to the Forum.Hope you find it useful and fun. Image Image Image
Hello and a warm welcome to you Image

Thanks for telling us about things. It's been a long journey and you describe it well. What I am not clear about is just how well you have been coping with it all and what affect has it all had on you ? It sounds like you have responded very well indeed to the changing needs of your parents.

Its good to have you with us here. Plenty of folk here with all sorts of experiences, but always room for a few more !

All the best,

Robert
Hi,
Just wanted to say Welcome Image Image Image
xx
Hi Saoirse,

Good to have you on board Image
Hiya and a warm welcome to the forum.
Just wanted to say hello. I too have had relatives refusing to complete forms, pride gets in the way so often. FIL flatly refused to apply for a blue badge to make parking easier saying "I'm not disabled!" even when he couldn't even walk from his house to the gate. My mum refused to claim DLA for at least 10 years. It's all very well respecting other people's wishes etc. etc. but we are often the ones who seem to suffer the consequences. FIL lived in a rented house, wouldn't even put draught excluder on the north facing front door as the "landlord might benefit when I'm gone". GRRRRRRRR! You were lucky that the doctors told you as much as they did by the way, when my mum was admitted I had terrible problems because they refused to talk to me, and refused to ask mum if it was OK to talk to me either. I had to make a formal complaint - then they asked mum, and she said it was fine to discuss anything and everything with me.
Thanks everyone! Image Great to finally find a place for Carers
Just wanted to say hello. I too have had relatives refusing to complete forms, pride gets in the way so often.
Unfortunately in my case it was nothing to do with pride, my mother has a personality disorder and had no intentions of letting me get paid to look after her, far from it, I should be paying her for the privilege of looking after her!
Thanks for telling us about things. It's been a long journey and you describe it well. What I am not clear about is just how well you have been coping with it all and what affect has it all had on you ? It sounds like you have responded very well indeed to the changing needs of your parents.
I started another couple of threads about injuries I've suffered etc during my Caring. I didn't have much of a life before I became a Carer (due to Mother's PD) so it wasn't a huge upheaval for me to have to stay home and look after my parents. The worst of it was Mother's behaviour getting worse and worse, the verbal abuse I took from her was unreal - and it stopped the minute Dad died!

When I look back I wonder how the heck I survived! Nowadays thanks to a more helpful nurse I have Mother going into Respite every two months and Daycare once a week, which makes my life a lot easier!