Hi, I care for my OH, who has just been diagnosed with ‘dementia’. Possibly Altzheimer’s with some Lewy Bodies based on the memory test. He also has has eyesight problems and impaired kidneys. He would seem to be moderate to severe. The only tests clinic want are CT scan and hearing check. I would think eyes and heart are important too. I have asked for a more precise diagnosis. It’s difficult to get any help. Age UK cut his toenails. It’s a lonely battle. It’s good to hear from other carers, share experiences and help each other.
Welcome,
Has anyone explained to you that he is now entitled to Attendance Allowance, and Exemption from Council Tax?
Be sure to apply as quickly as possible, especially now the government is increasing certain benefits!
Ask Social Services for a Needs Assessment for him, and a Carers Assessment for you, looking at what would help you in your caring role.
Hello & Welcome Bunny
https://www.alzheimers.org.uk/get-support/legal-financial/benefits-dementia
Try and link up with a local carers group
https://www.carersuk.org/help-and-advice/get-support
Hello. Please request a full care needs assessment. Good luck and make brief summary notes too.
Hi Bunny
That is a lot for both of you to process and deal with.
Please don’t hesitate to follow all the advice and leads above.
Also contact the Carers UK Helpline whenever you need.
If your husband is still deemed to have the capacity to do it, write a letter for him to sign giving you permission to discuss his health etc with his GP and surgery.
If you don’t have POA - power of attorney ask Carers UK helpline about that to try and discern if you are still able to do this yourselves or if you will need a solicitor for it or if it is too late to do POA.
POA allows you to be his agent acting in his best interests when he loses capacity but if you don’t have it then the social workers/professionals do that.
Carers UK information and 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)
Eyesight issues
If there has been a name for it search it online and see if there is an organisation for it.
My mother had her annual diabetic eye test and she was sent to the eye clinic and was diagnosed with dry macular degeneration and has regular check ups there in case it goes to wet macular degeneration and she needs injections to preserve her sight and stave off blindness.
They are probably dealing with the most urgent issues first.
My mother has irregular heartbeat and angina for which she has a medication and a tongue spray and that is it, no further appointments etc.
Don’t forget to do that letter to the GP surgery for you to be allowed to discuss his health etc.
It’s helped me a lot for caring for my mum.
Cannot really add much to the previous suggestions. However Talking Point is a very good Forum too and is just for those with dementia and their carers. It may be worth checking it out ?
You could see if you have a local Carers group. They often have meetings but they do sometimes offer a ‘befriending’ service by telephone. Most of the befrienders have been Carers so will understand how you must be feeling right now. Also do try to look after your own mental and physical health, as caring is very isolating.
Thanks for your advice . I have asked DWP for attendance allowance form and await formal diagnosis in writing to go and me before asking for council tax reduction. I had a carer’s assessment over the phone with carers group but it wasn’t what I had told the chap. Altzheimer’s Society are great and will help more now we have diagnosis.
I have both LPAs thankfully. The paperwork is hard enough. Thanks so much
Hi Bunny,
welcome to the forum.
Do you mean you had a Carer’s assessment and by phone and the report is inaccurate and not what you said/asked for? If so, challenge it, let them know asap as there is probably a time limit on when you can do this. There should be information about how to do this on your council website and if there isn’t contact the Carers Uk helpline for advice:
Our telephone helpline providing information is open from Monday to Friday between 9am and 6pm - 0808 808 777. You can email us at > adviceline@carersuk.org > and we will respond to your enquiries within 10 working days, although it can often be sooner.
Melly1
Bunny, make sure they give you a formal diagnosis asap.
Many doctors don’t understand that you are entitled to extra benefits once you have it, they think it is “kinder” to delay it.
Thanks Melly1. Yes, I had a carer’s assessment over the phone mainly multiple choice answers with little room for me to say much in fact quite a lot of what he wrote was the opposite of what I said I told him I was registered with age UK etc but he wrote he had suggested it first . I asked for a copy by post.it took him 3 weeks and only after I called twice. He emailed it to me costing £13 to print . I wrote detailing all the inaccuracies heard nothing. I won’t be assessed by him again.
Thanks Bowlingbun I made it clear to memory consultant I/oh wanted diagnosis in writing and specific. She said we always do that but I can give it to you now.verbally isn’t good enough. I told I needed it to get help. I have typed minutes of the meeting what was agreed and will post it to her tomorrow. We met her on 7 November. Thanks
When you send the minutes, make it clear that if you haven’t heard within two weeks of sending, you will assume that the minutes have been read and are an accurate record. That way if there are any inaccuracies they’ll be quick to respond - or if they don’t, you’re reasonably covered. 
Thanks, I have made my letter helpful in tone but making all the salient points in writing such as I am sole attorney and I have got a medical alert wristband and booked a hearing test for OH as agreed and I look forward to her written diagnosis to enable me to get help like council tax reduction. I am going to confirm every meeting or call in writing to ensure it’s on record. Thanks
That sounds perfect.