Where do I start?

I have been encouraged to join the group by my sons for my own mental, physical and financial health. I am juggling caring for my wife, a full time role that has me travelling 4 hours a day and supporting my sons at University or looking for work and have to admit that at times I find my self fighting bouts of depression, but I have to stay strong for them all.
My wife has been ill for nearly 6 years but it still has not been officially diagnosed. She was collapsing and having memory issues which has resulted in epilepsy, a pace maker and what is either Alzheimers or Dementia but no official diagnosis that I am aware of.
Although generally OK in herself, I cannot leave her to fend for herself for long periods, can’t let her cook (she nearly burnt the house down) and now gets lost in the town we have lived in for 30 years.
There is so much information out there that I get lost or frustrated looking into it and give up. Is there a simple way to work through what support is out there to perhaps reduce my hours, get some financial and social support?
I see a lot of topics and posts on here and it’s mind boggling. I just want an easy guide to work through.
By the way, as there is no official diagnosis, my wife is holding on to a hope that the medication for epilepsy and pacemaker has stopped the deterioration and we just have to manage around it, but that’s not the case, her memory issues are getting worse and I haven’t the heart to tell her what I think it is. Any advise would be appreciated.

Hi Derek,

Welcome to the forum.

I’ll ask lots of questions later, but to save bombarding you right now (I’m decorating) here are just a few to start with.

Please can you explain why you are travelling for 4 hours a day?
Is your wife claiming DLA or PIP (assuming she is under pension age?
Are you claiming Carers Allowance?
Has the GP made any attempt to give a proper diagnosis? Brain scan?

Hi Derek,

Welcome to the forum - sounds like you’ve got a wealth of caring experience to share here.

Do have a look round our help and advice pages and make sure you’re getting all the support you can. Our Facebook group is a good community too: Carers UK

If you would like to talk to somebody about the support available to you I would recommend calling our helpline which is open Monday to Friday, 9am-6pm on 0808 808 7777 or if you would prefer you can email advice@carersuk.org at any time.

Also I would really recommend our Upfront guide which is a simple tool on our website to create your own personalised guide for benefits and entitlements which are available to you: https://www.carersuk.org/upfront/.

Hope this helps and please let us know if you have any questions.

Best wishes


Afternoon Derek

You certainly have a lot on your plate. Pat yourself on the back. Your son’s have directed you to a good place. The more we talk and share usually the better we feel.

Has there every been a Social services needs assessment on your wife. There does not have to be a formal diagnosis for this to happen. Assessments are about what individuals need help with. A needs assessment and a carers assessment for you.


You need to locate your local carers group. Where there like minded people. And can provide help and support to you.


Hi Derek,
i’m sorry to hear of your wife, it’s really hard to see your loved one going through this.
My wife has severe epilepsy and has regular seizures, and juggling work with caring and doing household chores isn’t easy. It might be worth you asking for support from Adult Social Care?, as when my mother-In-Law passed away back in 2005 I had to ask for extra support. This would start off with a care needs assessment but you too are entitled to a carers assessment in your own right, i’m not sure if you’ve explored this?.
Our daughter is a at college and I didn’t want her Mums health care needs to impact her education or chances go to uni if she wanted to, although she’s brilliant with her Mum and a very caring and responsible person and especially helpful when I have to work a weekend or different shift pattern.
As a carer it can be lonely and sometimes very stressful indeed but posting on the likes of these boards or facebook groups can not only help you but also others.
Epilepsy is a complex condition and effects many functions, from falling in seizures to poor memory and mood so it might not be dementia, sometimes the drugs can cause major issues, as a carer though you tend to be on a knife edge all the time as epilepsy is so unpredictable where a person can seem fine one minute to being completely unconscious the next. In our case we have administer rescue medications to calm Brain activity and bring seizures to an end. As a carer, especially to a loved one it’s very difficult to “switch off”.
Is the pacemaker you talk about for her heart or is it Vagal Nerve Stimulation for epilepsy, my wife tried that for epilepsy but it never helped.
I hope you are able to get extra support Derek.