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left alone

angie999

New member
Mar 26, 2020
1
0
i was diagnosed in october 2019 and i feel i have just been left to get on with it .no one has been in touch with me about it i went to the doctors,i was told to get on with it theres nothing they can do a mental health nurse as just made an appointment to see me next month should i have been told like this and just left
 

karaokePete

Registered User
Jul 23, 2017
6,297
0
N Ireland
Hello and welcome @angie999 .

That doesn’t sound right at all. Would a different doctor be available at the surgery as some may be more sympathetic to dementia than others.

Feel free to ask any questions as the membership here have great collective experience and knowledge
 

Bunpoots

Volunteer Host
Apr 1, 2016
6,281
0
Nottinghamshire
Welcome to Dementia Talking Point @angie999

The mental health nurse should be able to tell you what is available to you in your area.

This forum gave me more support and advice than any of the medical professionals while I was supporting my dad with dementia so I hope you’ll keep posting.
 

Izzy

Volunteer Moderator
Aug 31, 2003
66,360
0
71
Dundee
Good morning and welcome to the forum.

I'm so sorry to hear about your diagnosis and can only begin to imagine how scary it must be for you. I think it must be even harder in the present circumstances as the health services are so overwhelmed with the coronavirus situation.

I wondered which form of dementia you have been diagnosed with. There are factsheets on this forum we could direct you to.

It might be helpful for you to give the Helpline a ring and talk things through with someone there -


I'm glad you found the forum and I'm sure you'll get lots of help and support here.
 

PJ

Registered User
Jan 26, 2017
359
0
55
Bristol
hello @angie999 welcome to Talking Point I have to say I have always found the Alzheimer’s Society very helpful. I think its worth asking your GP or memory clinic if you have a support worker? I’m so sorry you have been diagnosed in such an awful way with very little support. Have you been told what sort of dementia you have?
 

sadWife11*

New member
Mar 27, 2020
8
0
i was diagnosed in october 2019 and i feel i have just been left to get on with it .no one has been in touch with me about it i went to the doctors,i was told to get on with it theres nothing they can do a mental health nurse as just made an appointment to see me next month should i have been told like this and just left
Sorry to hear this. I don’t know where you live, but we live in Scotland, and as soon as my husband was diagnosed , he was allocated a CPN(Community Psychiatric Nurse) and she has been so very helpful throughout our difficult journey. Our GP has been great too. As the illness has progressed , we have had contact with social services etc. You must surely be entitled to this help too. It really makes a difference. I hope you get this help, and soon.
 

NotTooLate

Registered User
Jun 10, 2017
301
0
Alvechurch
toolate.blog
i was diagnosed in october 2019 and i feel i have just been left to get on with it .no one has been in touch with me about it i went to the doctors,i was told to get on with it theres nothing they can do a mental health nurse as just made an appointment to see me next month should i have been told like this and just left
Good Morning Angie.

The first thing I noticed was that you have not commented on any of the replies you’ve received to your initial post! I hope you are ok?

Let me start by saying I have dementia too. It has been given the name of, Mixed Dementia, because like most, my symptoms do not fit neatly into one group, or another!

I’ve been diagnosed about two years, maybe a bit more, but when I was first told, I couldn’t believe it, I wouldn’t believe it and I wanted and needed answers. I asked to talk to someone, to explain what this meant. My son and daughter continually contacted the centre stating that I needed help. After several months I saw a young man, who was very good and really wanted to help. He would say things like, I’m not really sure, but I will ask. It was only later that I was told, he was not a doctor, but a training physciatric nurse.

I wanted to know, what would happen to me, would it get worse, what should I expect, will it kill me, how will I die, what can I do and what treatment is there? The response to all of this was negative, or non comital!

The one comment that stuck with me and became the title of my blog was…it’s.. Too Late!

My son and daughter, both my carers and have power of attorney, got lots of help and advice while I go mainly nothing. I nurse that when she came, was always late and was continually on her phone texting. I don’t see her now. The doctor at the clinic… he will have this question that must be his thing… ‘And how are you in yourself!? I didn’t even understand what that meant!?

Now, I’m not prepared to sit down and let this thing beat me and be told it will beat me!

I believe that it is about, Living with our dementia and not just about dying with it. It very much depends on what we do in all aspects of our lives, but I believe we can slow, stop and maybe reverse the symptoms of what we know as dementia. This gives me hope and far more than anyone else has given.

If you want to ask me anything related to your dementia, I will honest and tell you what I believe and what I am doing. I must stress that dementia means a lot of different things, but if I can help, I will do my best.

I’m doing lots of things in my quest to live with my dementia. One of the things is writing a blog, something I have never done before. If you would like to have a look and make any comments, I would truly be pleased. I’ve put the link below. It will not cost you anything, there is no advertising, you don’t have to sign up, it is just for people, like us that have dementia and can help each other… hopefully!

It's not... Too Late Click the blue text to the left...

Stay well, stay safe, have hope and be happy!

Richard