This Horrible Disease

[elwoodlpool]

For the past god knows years ive battled with how mum has been going. From the early stages were i didnt really recognise she was ill. Were she would as me "Mark what should i be doing now" to were she used to start coming into my room and just sitting there in a sort of trance. The thing that makes me so mad now is being left in the dark i mean no one in the medical proffesion has sat us down and said"You're mum has Alzheimers" I get really really angry when people say oh i dont suppose they can do a direct diagnosis. Has anyone on here had that ????? Has anyone had the diagnosis. Because as i come on here from time to time i cant hold my hand up and truthfully say my mum has the disease. I feel sometimes when people ask how mum is or when people ask whats wrong with here i shouldnt say she has alzhiemers.

Im just so angry confused and upset. And i realise along with me own problems suffering with depression and things i have no were to turn,


Thanks all

Mark

 

[Carolann]

Hi Mark,
I don't think anyone actually told me my Mum had Alzheimers, but from various things her consultant said we just knew. Mum died on Oct 21st last year, she was 82 and had been ill with this horrible, cruel illness for approx. 3 years.
Are you getting help for yourself fom your GP? I thought I was pretty fit, but I can tell you the last three years nearly brought me to my knees as I was also looking after my Dad who had suffered a stroke. My Dad died early last year also, so as you can see the last 12 months have been pretty rough to say the least - but you do have to look after yourself as well.
Even now when the 'phone rings late at night my heart starts pounding because I thinks its a call about Mum or Dad. I go shopping and think I must hurry back and then I realise that I don't have to anymore. Thease feelings stay with you for a long time.
I really feel for you because your Mum is about my age, it must be so difficult for you and your family. You must get help though because if you are prone to depression the situation as it is is going to make you feel worse.
Please take care of yourself,
Carolann

 

[Áine]

Hi Mark

It's good to see you posting again. My dad was given a diagnosis, though I seem to remember the psychiatrist saying something like "we think this is what it is". Perhaps it would be a good idea to ask the medics about diagnosis. If they don't know that you don't know and don't know you're unhappy about it, they won't be able to put it right.

I'd also second what carolann says about seeing your gp about yourself. It's important that you take care of yourself or you won't be able to be there for your mum and the rest of your family.

best wishes

Áine

 

[Grannie G]

Hi Mark, I`m pleased you`ve posted again, not because things are worse for you but because you will get lots of support here, even though we can`t solve your problems.

I have just posted this morning, on another thread, about diagnosis.

No-one told us in so many words that my husband has Alzheimers. His brain scan showed shrinkage and Aricept was prescribed. Because of Aricept, we presumed the psychiatrist suspected Alzheimers. Aricapt did not work for us. My husband had dreadful hallucinations and heard voices, so it was stopped. Reminyl was tried, with the same side effects, so that was stopped too.

He shows signs and symptoms attributed to Alzheimers, short term memory loss, awkwardness in movement, loss of gross and fine motor skills, etc. But we do not know anything for certain and nor, I expect, do many others.

You are overcome with anxiety, I know, but I don`t think a definite answer will erase it. See your GP about your mother. See if he can enlighten you about her condition. Ask what is written in her notes. But most important of all, ask him for help for yourself. Ask for help to help you cope with the stress, the anxiety and the fear, brought on by the concern about your mother`s condition .

Please keep posting. We are all worried about you and wish we could do more to help. Love Sylvia x

 

[Lila13]

I don't think we ever did have a proper diagnosis. The psychiatrist who saw my mother at the 2nd memory clinic appt. prescribed Aricept, but I don't know if that was a diagnosis or just "let's try this and see if it works".

Lila

 

[elwoodlpool]

Thanks again all

This is my biggest gripe of the proceedings as i now live in Derbyshire and mum is still in Liverpool. Ive been trying to talk to her Doctor for the past and in not eggagerating this nearly four years now. Ive called him left messages spoke to his secratary and Never has he had the courtesy to call me or talk to me. I could scream as i find this really bad for a doctor. I just feel like im in the dark all the time not really knowing what is going on or how mum is trully doing in this horrible disease.

Thanks all

Mark

 

[Grannie G]

Dear Mark, Why don`t you phone your mother`s Doctor`s surgery, say you are desperate to speak to the doctor and ask if the receptionist would make you an appointment for you to phone him. That way might just get a result.
Love Sylvia x

 

[Gill W]

It took us a short while to get an official diagnosis for Gran.

She exhibited signs of the disease for several years beforehand, but mum & her other relatives put it down to old age & the fact that she spent a lot of time on her own since my Grandad died in 1996.

First port of call was the GP who did blood tests etc, then a referral to a Geriatric specialist. He did cognitive tests and memory tests & such like whilst waiting for a brain scan. The scan showed "significant brain tissue atrophy" and Alzheimers was confirmed.

If you're not getting any joy from your mum's GP, you are within your rights to make a formal complaint to the Health Authority in the area. You have every right to know what's happening with your mum & make headway into getting a diagnosis.

Best of luck. We're struggling for my Gran but we keep nibbling away at things & we make slow progress.