What support?

I thought things were getting sorted out earlier this year, but it looks as if the support system has once more failed me.

My aunt was admitted to a mental health unit at the start of the year following 5 years of hallucinations and delusional paranoia. I finally managed to get the psychiatric nurses convinced that she was having problems when she started calling the police several times a day to report men on her roof. I live close by, but will not have her living with me as I can barely cope with the 2 boys.

Her admission to hospital gave me a much needed break as it lowered my work load immensly, cutting out her medical appointments, daily care, shopping, cooking & cleaning & an end to multiple phone calls daily from the police. She was discharged last week  with a diagnosis of Lewy Body Dementia & Parkinsons, and has, (on grounds that she has mental capacity) returned home. She had a care package in place, but has already fired the carers who visited in the evening & is getting up before they arrive in a morning. She claims to be eating & coping well, yet we find out of date food in the kitchen & fridge. She is insistant that her scissors have been stolen and that a thief has taken 4 pairs of trousers and a cardigan. Oh yes, despite being in a well detached double glazed bungalow, she can hear every word her neighbours say ( usually about her), and has dogs in her bedroom most of the time. When she sits brooding she rings the police accusing neighbours of attacking her, trying to break in, damaging her property etc. 

Yesterday she took a taxi into town & forgot the number to get them to take her home. Luckily she accidentally called my number on her phone when she tried to switch it off, I've got my number on a speed dial as well as on her sim, so I got her a taxi home. She can't remember being in town. I know she has rights, but her rights are wrecking other people's lives. Her poor neighbour is 8 months pregnant & really doesn't need the police knocking on her door to see what has been going on & checking out my aunt's allegations.

As for life with the 2 boys, well it goes on and on & on. No signs of a school to meet Marc's needs, Seven SLD schools have said they can't meet his needs which  suppose is better than no replies, at least the Local Authority have evidence that they have to use. His social inclusion supporter has resigned from the 4 hours a week that we had direct payments to cover, in fact the hours had been increased to 10 a week ,yet we've not had a single aplicant for the post which was advertised before Christmas.

Things really are insane in this country, I have £9 per hour awarded to pay for a supporter/carer to enable Marc to access social activities, yet I have to care for 35 hours a week for £55. It really makes me feel valued! Well undervalued any way. Where are the care packages and support that we hear off? How about the support for children with SENs? I've been searching & fighting for almost 10 years now & still getting nowhere. Direct payments are to be stopped from the iend of this month &yet another assessment done so that we can look into family links as a support package, but only of there is a suitable family.

My days are just a round of getting up, caring for the boys & my aunt, trying to keep Dad out of mischief, he may be shaky and 83, but he has no tolerance of anyone these days, so is to be polite, a grumpy old man & collapsing into bed again.

If it wasn't for the PC I'd have no social life at all, friends vanished long ago except for one, and she's now 200 miles away. Family can't help, as an only child there ain't anyone else to ask. My boys are still wonderful even though they're exhausting.


I feel very much like you and

I feel very much like you and if I didn't have the PC I too would talk to no one. Sometimes I think I haven't even used my voice except to my daughter. Support isn't there and unfortunately with so many cuts many of us won't get the help but we keep going. If we don't get our stories out there no one would know any different and one day one of our blogs may help someone else not feel so alone.

I know at times reading what others have written has made me realise we are not alone and at least carers understand and support each other.

Dear krisistevens You have my

Dear krisistevens
You have my every sympathy.
My parents came to visit last month. He is 81 and suffers from a selection of complaints but is amazing for his age. On top of which, he is my mothers carer 24/7. She is 3 years younger but has parkinsons with dementia. I had not realized how hard he had it since I was with them usually for only 1 weekend in 4 since I live many many miles away and often work weekends too.
So they decided to visit and during their stay he started vomiting up blood. We whisked him to a&e and they admitted him 6 hrs later in to a ward ( I think the wait was only to wait till the poor guy was sick again all over the casualty area since it wasn't till they saw the blood that they did anything).
2 days later they discharged him as the anti sickness drugs had resulted in no more sickness. 4 hours later we whisked him back due to symptoms returning in full and duly waited exactly the same length of time once more for them to admit him.
He has now been in for 3 weeks had 2 ops and is nowhere nearer to having a functional gut. He has been nil by mouth the whole time and lost a further 2 stone. For a while he could not even stand unaided...and there seems to be no progress being made. It's very stressful.
Stress levels not being helped by having to take over as mothers main carer. She is very confused but expects to get her own way at a all times. And for people like Wayne who think this is my filial duty to a parent who raised me I would also like to point out that she expects to get her own way even when she doesn't know what she wants. I ask in hope of fulfilling her every whim but then get told off for not providing something that she cannot describe e.g. Today it was "fennetters" get me one of those if you can!
We have secured 2 care slots to get her washed and dressed in the morning and put her to bed at night.
We have purchased care from 8till5 5 days a week.
But we have to run her to hospital to see my father every day and that's a 25min journey each way meaning that she gets to see him for 20 minutes a day and has to be literally dragged away from him at night.
We are holding down 2 busy jobs and doing the best we can but it's hard to care for a demanding person who is ungrateful for all you do when they disrupt your sleep, complain, fret, cause stress to others ( eg my father) who I am also responsible for. I could take time off work but I have to pay the mortgage. Do I take time now or when my father is eventually discharged? The chances he will be able to care for her at that stage are nil.
I also have to sort care for them when they go home eventually as there is no way I am letting him take full responsibility for her as he has been...do I move them out of the family home ( and take on the decluttering and packing for a hone of 40 years etc) or do I leave them both there with extra care, or do I split them up and sort their separate care needs after they have been married and together for 50 years. Choices choices and where to turn to for advice?
So Kris I hear you and sympathise with you. Ia m sure you are doing an amazing job under difficult circumstances.
I am sure you don't get the credit and praise you deserve
I am sure that there are no easy solutions
I am sure you will get through but I m not sure it will be painless
Good luck
Just remember how much you love em all really

its difficult looking after a

its difficult looking after a parent with mental health problems,both of mine have problems,but i give them all the help thay need,and just try to give them a sence of normalaty,in the years thay have left.I get them what thay need and what thay want,thats what makes them happy.best wish,s

Hi the words hallucinations

Hi the words hallucinations and lewy body caught my eye! You poor thing, my mam had this cruel form of dementia. She was a carer for my sister with special needs (who began to show signs of early dementia), then I as a single parent carer had my boys one of which has severe autism. Very very difficult times! The dementia care partnership saved us, and agreed to take both my mam and sister into one of their supported living homes. As mam had been in and out of hospital the social worker there was a good support, and had put us in the right direction. But in the mean time (waiting to be moved in) my mam had to be taken into a secure ward in hospital for her own safety (and everyone elses) . Yes make a nuisance of yourself! No one with Lewy bodys should be on their own (I know they get angry and often want to be) its not safe. All the best.

whow and i thought i had

whow and i thought i had problems. I can sympathise with your battles over appropriate care packages, My husband is supposed to have 24/7 NHS proved care as he is in need of round the clock care being totally dependent of others, well actually me at the moment. Our story at www.onmybiketoo.blogspot.co.uk

Is it not possible to bring in a GP and Social worker to have her sectioned under the mental health act for her own safety ? You probably have already tried that though. Could one of the specialist charities help, ie MIND, Parkinsons Association etc as it sounds like you need an advocate.

keep trying, phoning, make a nuisance of yourself all I can say really. Squeaky wheel ...

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