• We're currently experiencing technical issues with our newsletter software, so our Dementia Talking Point monthly updates have been put on hold for now. We hope to restart the newsletter soon.

    Find out more >here<.

Got our diagnosis over the phone a week ago .

Margaret2020

New member
Mar 23, 2020
1
Good morning
We had an appointment at the memory clinic at the end of April but with covid agreed to have the diagnosis straightaway as it was going to be over the phone . That part went well and I’ve had good support but being in lockdown with no human contact I obviously am struggling now to come to terms with being a Carer. It’s my husband’s illness but it’s mine too. So the forum has frightened me as i realise how wide the diagnosis is , mixed dementia with Alzheimer’s for s fit and active 80 year old and I really don’t know where to start. A friendly voice would be a good start .
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,740
Kent
Hello @Margaret2020. I would like to be the first warm and friendly voice to welcome you and i`m sure there will be more.

I agree the illness will affect both of you .

I understand how frightening a diagnosis like this can be and please give yourself time to adjust to it and collect your thoughts.

Sadly because of the coronavirus you will be even more limited to accessing help and the Alzheimer`s Society has many factsheets which might help you collect your thoughts.

Hold on to this number if you need immediate advice.


Please have a look at these Factsheets

 

Sarasa

Registered User
Apr 13, 2018
1,671
Welcome @Margaret2020. This is a great place for help and advice.
Have you got family or friends that can support you, even remotely by phone calls and skype conversations? Also it might be worth checking up what you're local council is doing in the way of supporting people who need a bit of extra help at the moment.
Keep posting, there are lots of friendly voices here.
 

canary

Registered User
Feb 25, 2014
13,370
South coast
Hello @Margaret2020 and welcome from me too.

When you first get the diagnosis it can be totally overwhelming, even if you are expecting it, and can take a while to come to terms with. Please dont get frightened by everything that you read on here. Not everything that you read about will happen to you and your husband and even if it does it may be quite a long time ahead. Things happen gradually, we can advise and you will find that you will be able to cope.
 

Pete1

Registered User
Jul 16, 2019
866
Hi @Margaret2020, a warm welcome to the forum. I totally understand when you say that it can feel quite frightening looking at the forum - what I would say is that everyone's journey is different. There will be similarities and experiences that can be shared to help a particular problem you are wrestling with, but by no means does everything apply to everyone. It is challenging at times as I am sure you are finding. I can only imagine how it must feel trying to come to terms with the diagnosis and the challenges it presents during lockdown, it is difficult enough in normal times. Is there anything specifically that you need help with at the moment?
 

Philbo

Registered User
Feb 28, 2017
834
Kent
Hi @Margaret2020 and welcome from another friendly voice.

Some great advice already but to add to this, many (if not all?) of us will have felt the same emotions at the start of our "journey".

The initial fear and apprehension is often referred to as anticipatory grief - often after reading/researching about how dementia can progress, yet having to come to terms with what lies ahead.

I can remember after initially coming across various websites, such as the Alzheimer's Society, Age UK, I tried to avoid the subject, almost burying my head in the sand. But as the stark reality of having to support the person with dementia sinks in, you quickly realise that you will need all the knowledge and advice you can get.

For me, six years ago, I was thankfully able to find a local support group, who held a dementia coffee morning each month. From there, I was able to glean loads of useful tips and contacts for a range of support organisations in our area.

Of course, this dreadful pandemic and associated restrictions have temporarily halted any face to face support, which in a way has highlighted just how valuable, organisation such as AZ Talking Point are in helping us deal with what is a very cruel disease.

I found that a good place to start was to search online for Dementia Support in your area. The Alzheimer's Society "support near you" ( https://www.alzheimers.org.uk/find-support-near-you ) and Age UK (https://www.ageuk.org.uk/services/in-your-area/) have a lot of useful information and links.

I hope this helps in some way so please keep posting - you are not alone.

Kind regards
Phil