Disagree With Diagnosis, What to do next?

[Hollypoppins]

Hi,

I hope everyone is well in these troubling times? I am looking for some help from the good people on this forum.

My Father in-law has dramatically changed in the past six months and is very confused and agitated. He has been to the doctors and has had a MRI scan and the results come back to say that he didn't have Dementia. However, I disagree. He is unable to remember simple things like his PIN number for his bank card and now writes it on the card. He can't remember where is he going when he goes out and gets confused about times he is to be meeting.
He is very confused and scared all the time. I fear for him as he gets spam posted through the door and feels he has to phone and give payment details. Without a diagnosis the family can't assist. What can we do?

 

[lemonbalm]

Hello @Hollypoppins . Has the doctor offered any other explanations for your Father-in-Law's change in behaviour?

I am wondering if you have any Power of Attorney in place so that you could redirect your Father-in-Law's post to your own address? It might be worth looking into getting a call blocker type 'phone to prevent nuisance calls if he doesn't already have one.

My mum went un-diagnosed for a couple of years but I was able to be with her during the day and arrange everything for her. This isn't practical for many people and can often make bringing in outside help more difficult! Have you been in touch with Social Services to ask about a care assessment? I understand you don't need a diagnosis for that to take place, just to tell them that your Father-In-Law is vulnerable.

I'm sure other members will be along with more advice.

Assessment for care and support in England

What are care assessments and how can people with dementia and their carers access them? This information is for care and support in England.

www.alzheimers.org.uk

 

[canary]

Has your FIL been given a diagnosis of Mild Cognitive Impairment (MCI) @Hollypoppins ?
50% of people given a diagnosis of MCI have a revised diagnosis of dementia within 12 months, so it is worth leaving it a few months and then asking to be referred back to the memory clinic.

My OH still does not have a diagnosis after 10 years, although by this stage everyone is aware that something is wrong. A diagnosis will give you validation, some idea of the future and open up some doors, but, nevertheless, you would still be left pretty much to sort out things yourself. Im afraid that there isnt much support for people with dementia, or their carers out there and a lot of what is there, you can access without a diagnosis.

Do try and get your FIL to grant POA if you possibly can as this will make everything so much easier in the future and, as lemonbalm says, you can use it to redirect the mail. We have a BT call blocker phone which makes life so much easier. OH is now beyond the stage of answering the phone, but it is still useful to me and was a godsend in the earlier stages when he was being caught by scams. Another tip is to scratch off the three digits on the back of any debit/credit card so that he cannot give the details out over the phone.

You can indeed contact Social Services for a needs assessment without a diagnosis. I did and now OH has carers in the morning to help him wash/shower, shave, clean teeth and dress. You also dont need a diagnosis to apply for Attendance Allowance (or PIP, if he is still of working age) - a non-means tested benefit for people with any sort of disability, including dementia, so I would recommend you do this. Its a time-consuming form to fill in and I strongly recommend that you get help to fill it in - Age UK and Citizens Advice will do this for free. You wont be able to access anything specifically for dementia without a diagnosis, so OH cant go to the local dementia hub, but there are other places. Ive found a couple of general coffee mornings, a care home that will take him for respite and a day centre that will accept him - although at the moment he cant go to any of them because of covid.

I must say, though, that the best place place that I have found for help, advice and support is here.

 

[Pete1]

Hi @Hollypoppins, welcome to the forum. Some really good sound advice already provided - I would really echo the suggestion of putting a Power of Attorney in place as soon as possible, it could become extremely important to enable you to help FIL going forward. You mentioned that he was very confused and scared all of the time, I was wondering whether he became more confused later in the day (late afternoon/early evening)? I'm assuming FIL lives alone, independently.

 

[Hollypoppins]

Hi, Thanks for all the feedback and advice. @Pete1, we haven't monitored if he is more confused at different times of the day. Can this be important for a diagnosis? He lives with my Mother in Law, but she is also quite confused. It worries me that they seem to both be deteriorating.

 

[Hollypoppins]

Has your FIL been given a diagnosis of Mild Cognitive Impairment (MCI) @Hollypoppins ?
50% of people given a diagnosis of MCI have a revised diagnosis of dementia within 12 months, so it is worth leaving it a few months and then asking to be referred back to the memory clinic.

My OH still does not have a diagnosis after 10 years, although by this stage everyone is aware that something is wrong. A diagnosis will give you validation, some idea of the future and open up some doors, but, nevertheless, you would still be left pretty much to sort out things yourself. Im afraid that there isnt much support for people with dementia, or their carers out there and a lot of what is there, you can access without a diagnosis.

Do try and get your FIL to grant POA if you possibly can as this will make everything so much easier in the future and, as lemonbalm says, you can use it to redirect the mail. We have a BT call blocker phone which makes life so much easier. OH is now beyond the stage of answering the phone, but it is still useful to me and was a godsend in the earlier stages when he was being caught by scams. Another tip is to scratch off the three digits on the back of any debit/credit card so that he cannot give the details out over the phone.

You can indeed contact Social Services for a needs assessment without a diagnosis. I did and now OH has carers in the morning to help him wash/shower, shave, clean teeth and dress. You also dont need a diagnosis to apply for Attendance Allowance (or PIP, if he is still of working age) - a non-means tested benefit for people with any sort of disability, including dementia, so I would recommend you do this. Its a time-consuming form to fill in and I strongly recommend that you get help to fill it in - Age UK and Citizens Advice will do this for free. You wont be able to access anything specifically for dementia without a diagnosis, so OH cant go to the local dementia hub, but there are other places. Ive found a couple of general coffee mornings, a care home that will take him for respite and a day centre that will accept him - although at the moment he cant go to any of them because of covid.

I must say, though, that the best place place that I have found for help, advice and support is here.

Thank you, this advice is really useful, especially the last three digits of the card. As that could be done quickly

 

[Pete1]

we haven't monitored if he is more confused at different times of the day. Can this be important for a diagnosis?

Hi @Hollypoppins, it is just the often those with dementia (but not all) can get significantly more confused later in the afternoon or early evening, it is commonly referred to as sun-downing. This can increase as the disease progresses. If he was living alone that might be a reason for his fear of his surroundings - it is not uncommon for someone who is sun-downing to become unfamiliar with their surroundings, even if they have lived there for many years - it can cause them to leave the property on a mission to get 'home' (normally a childhood home). I'm sure Mother-in-law would have mentioned it if it was a specific problem - I'm guessing then you just mean a more general confusion of the day to day and an anxiety of everyday events?

 

[Sirena]

I wouldn't set too much store by a diagnosis, it won't really change very much. My mother was told at her first memory clinic appointment that she just had MCI. Within 12 months she had another appointment and was diagnosed with moderate dementia. Her first symptom was an inability to deal with anything financial, she couldn't remember passwords, PIN numbers, or how to transfer money, and she kept getting final demands for things she hadn't needed in the first place (like broadband, and a second mobile phone).

If you can, please encourage your father in law to do a Lasting Power of Attorney. Fortunately my mother had done one a few years earlier, so it was ready for me to use when I needed to. As long as he agrees you can use it to help him, it doesn't matter whether he has a diagnosis or not.

You could also get their post redirected to your house (or another nearby relative) so you can screen out any spam. It will also allow you to see any unpaid bills. If you have LPA you can arrange the redirect yourself, but otherwise you could tell your FIL you'd like to help out by dealing with difficult correspondence and ask him to sign the redirection form himself.

 

[Lizbuff]

Hi Hollypoppins
This is completely random & probably nothing at all to do with the confusion you're noticing with both your parents-in-law, but may I just ask if their boiler/heating/water system is checked regularly?
I love a mystery (call me Miss Marple!) & the fact that they're both seemingly more confused made me wonder if it could possibly be carbon monoxide poisoning or fumes of some sort? Something environmental?
As I say, probably not at all, but I couldn't help mentioning it, hope you don't mind.