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Need Help - Carers UK Forum

Need Help

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Hello there
I have just joined the carer uk from a recommendation from my CBT councillor. I am writing on here as my partner and I need a lot of help right now and no one seems to understand how much support we both need. I got signed off in 2015 with Depression because over a number of years from 2012 onwards I have had a lot a trouble with myself as I have had to deal with some major events in my life. One of them was losing my brother in 2012 and I was very close to him. The other was that my partner got diagnosed with a grade 3 brain tumour in addition to another life long condition called Cerebellar Ataxia.
Its been a downward spiral since then I felt suicidal towards the end of November 2015 where I ended up being on long term sick from a job I didn't feel I fitted in well. I was referred to Italk (a self referral service) from the Doctor and I attended a group therapy session for Anxiety and Depression. It was very useful and it did bring me somewhat back to life again. I seemed to sort myself out after that by exercising more and throwing myself into looking for new jobs.
I had a pretty good year last year as I got offered a perm job in payroll for Fyffes (banana company) and this a career path I had always wanted to do this job. I was so relived as I had been temping on long term roles for such a long time after being made redundant back in 2009 its had been a very unsettling time for me.
So anyway the point of my post is that now my partner has a very low mood for a number of reasons. He has three disabilities. One is Aspergers Syndrome which a lot of people will know what that is. He also has Cerebella Ataxia which is basically the balance section of the brain has shrunk so he is very off balanced and has a lot of falls on walks and in the home. The other condition is a grade 3 brain tumour. It cannot be removed because of the Ataxia as he would lose his field of vision. We had some results on Tuesday for that as he had radiotherapy treatment last May. They told us all is ok the tumour has shrunk although still there is within a safe zone. They are going to monitor him every 6 months by doing an MRI and then a check up shortly after.
He wasn't happy with the results as he wishes the tumour would kill him as he still has to live with Ataxia and he cant be what he used to be. He also has a mucus cyst in his lower right side of his lip and he has just been left to deal with that. The GP told him to wait 2 months as Cysts can clear up on their own however it didn't go it just got bigger or more resilient. The next time he went he saw a different doctor who told him they weren't qualified to deal with him (which is disgusting) and referred to go and see a dentist. Why they could have told him to do this in the first place is beyond me. So I said to him to call Boots Dentist which is the one I go to. He goes to see them and they say they cant remove it and refer to Hampshire Clinic who want to charge 1000 for the removal of a pea sized bubble. So he had to cancel that as he is only on benefits and cannot afford that cant of money. It now been left that the hospital are 'Supposed' to be calling him to arrange an appointment to hopefully sort this out but we haven't heard a thing.
My partner is in touch with I talk as well and is seeing them next week. I personally feel emotionally drained by all of this as no-one gets that we cant do this on our own. Due to the Asperger's he get angry and hits and damaged doors so that another daily issue I have to deal with.
I feel like calling the carers number on here but I just don't know what to say to them and what if I cant get any help I am afraid of getting depressed again and getting stuck where I was over a year ago.
Hope to here from someone soon
Thanks
Lisa
As you are in Hampshire, like me, are you aware of Carers Together in Romsey? Or the Princess Royal Trust for Carers in Andover. I know there were coffee mornings in Eastleigh for carers of people with mental health issues. Ask Hampshire to do an updated needs assessment for your husband, and a Carers Assessment for yourself, as a first step.
Hi Lisa
It certainly sounds like you and partner are dealing with a lot and I am pleased you sought help for yourself and so has he.
Any time it feels particularly bad there is always Samaritans to talk to
http://www.samaritans.org/how-we-can-he ... contact-us

Yes, do contact carer uk helpline, firstly to check you are getting all the benefits you are entitled to and also to check if those benefits would allow partner free dental care

With such a range of conditions (for want of a better word) have you or partner sought help from specific sites such as
https://www.ataxia.org.uk and http://www.autism.org.uk/services/helplines.aspx
Both the above would have help on how to best cope and have support groups.
I can well understand your and partners frustration. He must feel it particularly as he probably has a need for certainty and routine which his physical ailments do not allow.
It sounds like you are doing well in difficult circumstances so remember to be kind to yourselves and to each other and to take and give little treats where and when you can

Kr
MrsA