My husband and I have been together for 13 years and have a 5 year old daughter.
He has a hereditary degenerative neurological condition (Spinocerebellar Ataxia Type 2 diagnosed in 2013) which since following a broken leg 4 years ago and a broken hip last spring has advanced far faster than we anticipated and he;s now had to stop work and can only do limited tasks without risk of injury (mostly because hes too stubborn to embrace aids or new ways of doing things and takes risks which put him and others sometime at risk)
I am wife, mum, breadwinner, carer, runner of errands, taxi driver to appointments, medical advocate as he struggles to express himself and his speech is gradually declining and organiser of everything and I don’t think I can do it for much longer without having a mental breakdown… but then there’s overwhelming guilt that he has it far worse than I do, he cant do the things he once could, he can’t even eat or drink due to achalasia and our poor daughter must be affected by my lack of patience and her dads inability to do the physical things most dads do and the worry that comes with seeing him in hospital quite often…
But his family don’t help us, his mum died of the disease in 2012 his dad pretends its not happening, his children from his first marriage are in their twenties and are enjoying being young as they should (there is a chance they’ve inherited the gene too so I would hate to limit the time they have to be normal and care free!) and His negativity over the last few years appears to have alienated all of our friends and my family … so I feel lost which I guess is why I’m here?
Sorry for the rant…
Rachel
Rachel,
I’m dismayed that you are dealing with this alone.
Ask Social Services to do a Needs Assessment for him, a Carers Assessment for you.
Also google “NHS Continuing Healthcare Checklist Assessment”. Then ask your GP to arrange one.
Are the school aware of things at home? There may be a child minder parent who could befriend your little girl and give her some time off and fun things. Social Services might fund this.
Come back here whenever you want.
Hello Rachel
I wanted to wish you a warm welcome to the forum, the efforts you are making for your husband are admirable! I’m not sure if you are aware but I wanted to highlight some of the options for connecting with fellow carers and for getting support from Carers UK should you need it. Many of our carers are struggling right now for all sorts of reasons, which is why we are running weekly online meet ups for carers to take some time for themselves and chat to other carers, there’s no pressure to share anything you don’t want to. I’m sure you’ll find others in a similar position to yourself.
We are currently running a weekly care for a cuppa session on Monday afternoons, you can find the joining link here:
https://www.carersuk.org/help-and-advice/get-support/online-meetups
We are also running more fun based sessions called Share and Learn, with topics ranging from Latin dance lessons, yoga etc.
https://www.carersuk.org/help-and-advice/get-support/share-and-learn-online-sessions
And of course if you are looking for advice and information, there’s our Carers UK’s helpline should you need advice or support - Our Telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm or you can contact us by email (advice@carersuk.org)
with best wishes
Ingrid