Carers -Lets support each other

ChloeB

Hi

I am a carer for my ds who is 13, he has many problems including Spina Bifida, Hydrocephalus, Epilepsy, Autism, ADHD. He has learning difficulties and a very low iq. He also has problems with his spine due to wear and tear, he is partially sighted and has mobility problems too.

He is a wonderful boy, who never lets anything get him down or in the way. He knows to enjoy life when he can and is lucky enough to attend a school where most of the children are autistic, it is an amazing school and well worth the hard fight it was to get him in there. He is really flourishing at the moment and I am so proud of him, even though it can be very hard work caring for him at times.

Miserjunkie

Hi everyone :hello:

I'm a carer for my DS who has High Functioning Autism with ADHD plus dsylexia. Bless his little cotton socks is so excited about his birthday party tomorrow (his first ever birthday party with his school friends - he will be 10) he was running (literally) around ASDA humming to himself. He was completely unaware that so many people were looking at him like he was an alien with two heads. That makes me so sad, but I refuse to cry!! I refuse to apologise for his condition either. In some ways our job is a solitary one, we fly by the seat of our pants to get results, and we are usually doing it up hill!!! Glad to join the gang.
:T
Miserjunkie

ladybirdh2

My 2 youngest children 2 and 4 years old have just been diagnosed autistic still trying to get my head round things.

It gets to me when I am on the phone and they are both screaming or the way other people turn round and stare at them when they start screaming.

Nice to meet you all

sharon59

Miserjunkie wrote: »

Hi everyone :hello:

I'm a carer for my DS who has High Functioning Autism with ADHD plus dsylexia. Bless his little cotton socks is so excited about his birthday party tomorrow (his first ever birthday party with his school friends - he will be 10) he was running (literally) around ASDA humming to himself. He was completely unaware that so many people were looking at him like he was an alien with two heads. That makes me so sad, but I refuse to cry!! I refuse to apologise for his condition either. In some ways our job is a solitary one, we fly by the seat of our pants to get results, and we are usually doing it up hill!!! Glad to join the gang.
:T
Miserjunkie

It saddens me at how people can make assumptions without knowing the facts!I also find it sad when people stare-mostly adults who should know better-at my SIL.She is very short plump and Down Syndrome but still a person.She smiles and says hello to people when they stare thinking they are being nice so at least her feelings dont get hurt.I tend to stare back at them-some dont even have the good grace to look away or be embarrased

lil_me

I'm a parent of 2 children, they both have 'different' needs. Oldest was diagnosed with Autism several years ago now (aswell as several other labels they stuck on along the way) and he's 9 now. 7 year old not diagnosed with anything but his SALT and OT have recommended ASD assessment.

Aswell as the fab carer centres mentioned if I can also mention Contact A Family http://www.cafamily.org.uk/index.php?section=861:cool:

j-baby-scotland

Hello,

I'm mum to a beautiful 4 & a half year old who has never let being effectively stillborn stop him. Full of beans.
He has some issues from brain damage no doubt.
I love him to bits & vowed in those early hours after his birth to make his life a happy one.
A work in progress.

I am also recently appointed guardian of my Aunt, who has dementia.

Lovely to meet you all.

Jess
x

Mrs_Ryan

Oh... Im almost in tears reading about all you wonderful people doing such a wonderful job, I applaud all of you. Its so nice to find a group of people who know about the stresses and strains of caring - I have been waiting probably about 6 months + now for my carers assessment as my OH's community psychiatric team are dragging their feet big style.
Because of where I live (in a rural area) and also the shifts I work its almost impossible to join any sort of carer's group, so I feel incredibly lonely and isolated sometimes as well as upset and stressed - as you must all know sometimes it can be absolutely heartbreaking to watch someone you love suffering in any way. Happily, OH's illness is generally well controlled with a cocktail of anti-psychotics and anti-depressants, and the vast majority of the time he is well, but he can still have bad days which is... well, not nice!

Stay strong everyone - you're all doing an amazing job. And as I mentioned, my specialist area is care of adults with dementia, so anyone needs any info etc, please feel free to shout (pm me if you need to) and I will be more than happy to help if I can. I also trained as a mental health nurse (but only got as far as the first year) so Im reasonable at other mental health probs as well.

Mrs R xx

mummytofour

ladybirdh2 wrote: »

My 2 youngest children 2 and 4 years old have just been diagnosed autistic still trying to get my head round things.

It gets to me when I am on the phone and they are both screaming or the way other people turn round and stare at them when they start screaming.

Nice to meet you all

Hiya hunni.

I just wanted to say that my boy has high function autism and is 7 but my 2 yr old I know is on the same lines. I remember that sense of grief when you hear the label. Even tho for years I knew but it was not until I was told by the dr that it all became real. I spend a little while feeling very sad but in all honesty it has been a positive thing, finding out for real that its not just me being a rubbish parent but my child does have a problem.

Chin up.

cw18

mspig - just had to say I've love your 'signature'. As a "child", a mother, and a grandmother it makes me chuckle whenever I see it


I'm currently recognised as the main carer for my DH by everyone apart from the benefits agency, as I'm also in full-time employment so can't get the carers allowance !! But this will change on 27th November, as that is my first day out of work having been made redundant -- though I'm not attending work at the moment as they don't want any of us who are being laid off around the office.

I've made the choice to become his recognised carer rather than look for a new job at that point as I won't get anything round here in the line I'm in, and honestly can't see the point in putting us through the stress of me applying for jobs and making appts for interviews -- especially when there's a chance I may have to cancel if DH is having a bad day which will count against me if I claim JSA instead of carers allowance.

DH was diagnosed with cancer in January of last year, and around March I was indirectly told they didn't expect him to make it to the end of the summer. But in May (?) he started to respond especially well to the chemo, and in August they called it a day for the treatment with a reasonably hopeful outlook.

Last Christmas he started to complain of back ache but didn't want medics involved (though I did call out the GP one day as I was worried). I got a message through to his consultant in the New Year (he was already booked in for a full body scan), and his follow-up appt was then pulled forward by about 4 weeks. At that we were told the scan had looked OK, but his markers were well up -- so they wanted to restart chemo.

DH had loads of problems with chemo last year (spent most of 4 months bouncing between two hospitals -- one for 4 days treatment, a couple of days at home, a couple of weeks in another after major reactions, a couple of days at home, and then back for more treatment), so said no more by IV. So in Feb he started taking tablets at home instead.

At the beginning of July we were told these were no longer doing what they needed to, and all they can hope to do now is buy him time (hence my decision to stay home instead of looking for a job -- in some respect my redundancy has been a blessing, as I would otherwise have had to consider giving up anyway, and I think we'd have each then blamed the other for the major drop in income).

He then agreed to move back to IV chemo -- but after this caused problems with blood counts and a scan showed results the consultant didn't like, they changed him to radiotherapy over the course of a couple of weeks -- which he finished last Tuesday. We're now waiting to find out the outcome of that (next appt not until 21st November!), but is currently having problems swallowing and is coughing badly -- both of which he was told to expect following the radiotherapy.

Reading about what some of you are going through with young children almost makes me I don't have the right to call myself a carer, as DH is still capable of thinking, reading, entertaining himself (radio, TV, crossword, and a couple of trips to the pub with some of his mates each week), and can even wash the pots most days (though I don't tell him when I have to re-do some of them). I don't have to fight with someone if I don't want to stick to a routine, I don't get looked at by people who think I'm a bad [strike]parent[/strike] wife, and I've not had to fight to get his condition recognised -- which I know is often the case when children have at least some of the conditions you've been mentioning on here.

But I still have the feeling of isolation as we've not been hooked up with any outside help or support. The one and only time MacMillan were mentioned at an appt (and they're the only group that has been mentioned), DH made it quite clear the he doesn't need that sort of outside help.

The one obstacle I do have because of being a carer to an adult, is that if he doesn't want me at the appointments there's nothing I can do about it..... he regularly books patient transport without telling me, and they won't take the carer unless the patient is a minor or has a condition that requires a 24/7 carer!! He also won't talk to me about how he's feeling (or what's been said at the appts he's exluded me from) -- which I think also contributes to the feeling of isolation. It has been said that he probably feels he's protecting me, but I need to know the full picture -- and he can't not know that given how much I try and pump info from him when he gets home If I try and talk to him he generally claims he's tired and takes himself to bed -- even if I'm about to serve a meal.....



Anyhow, I'm rambled quite enough for one post -- and Dirty Dancing has just finished, so I'll submit this, go and make myself a cuppa, let the dogs out into the garden for a few minutes, and then start winding down for bed

cw18

I've lost three grand-parents to cancer -- and the fourth was found to have it at his autopsy (sp?)...... They apparently thought it could have been the cancer that caused the stroke that caused him to come off his motorbike -- but the official cause of death was the injuries he sustained in the accident.

So I'm not exactly new to it, but it is the first time I've had to "live with it" 24/7 (and it seems wrong to say that when it's not me suffering from it )