• 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<.

Newbie here with early onset Alzheimer's Disease

Daryl2510

Registered User
Yearly update lol

Sorry I haven't logged in for a long time, but you know - this illness!

My mum has been in hospital and they told me that she has between 3-6 months left to live, so I have had to put a DNR (do not resuscitate) in place and her GP has prescribed morphine ready for when it is time for her to go, to make her passage into the next adventure of life pain-free and peaceful... Her care home has the medicine ready and a district nurse will come if the GP deems that she is coming to her final days and give her the morphine on a daily basis to ease her pain, as she now has a failing heart, lungs and kidneys, all due to the Alzheimer's Disease.

These next few months are going to be as stressful as the last few years have been with her and also coping with my diagnosis over the last 7 years with Alzheimer's and Parkinson's Disease haven't made it any easier.

Eh ho - it never rains etc... (although it's hammering it down as I write this lol)
 

Stripey3

Registered User
May 29, 2019
34
Q’s@Daryl2510
Just read your thread from start to finish.
Total respect for you. I think you are amazing and an inspiration to others.
I wish you strength for the future and very best wishes
 

Daryl2510

Registered User
Hi all...

Sorry for not being on for a while but to be honest I lost the bookmark for my link to this site and I hadn't got a scooby what the hell it was called!

Just to let you all know that my sister died on Tuesday. She was 64 years old...

I told my mother that her daughter had died... I know she didn't comprehend what I probably said to her - but as a loving and dutiful son, I felt she had the right to know - I mentioned it just once and will never repeat to her again the news.

As a person with early-onset Alzheimer's Disease themselves, I feel that, should it have been my son or daughter, I would've wanted to know such an event.

Have any of you other carers ever found yourselves in this predicament? As a person with the illness, how are your emotions at such news at someone close dying?

It isn't an easy subject, I know, but it is a hindsight into what we have to deal with throughout our lives and when dementia is involved, the consequences that these events bring to us as well.

Take care all,

Daryl x
 

Attachments

Ruth1974

Registered User
Dec 26, 2018
108
Hi all,

I hope that I have posted in the right section. :)

In June 2011, I was diagnosed with early onset Alzheimer's Disease... I was 45 years old. It really didn't come as a shock to be honest, because my family and I had been recognising the signs, because my mum is in the later stages of the disease and my grandma died with Alzheimer's Disease related symptoms too. What did come as a shock, was the early progress of the disease in me - my mum is elderly and my grandma was in her late 70s when the illness hit her too.

What makes it all a strain is that I am also the carer for my mum, and to top it all, this year her husband, my stepfather, has been diagnosed with the first stages of vascular dementia. In March, I had to take the drastic action of putting my mum into emergency respite care, as my stepfather was suffering terrible dillusions with his illness. It broke my heart when I made her social worker enforce the act, and when I had to leave her there, but I knew it was for the best. It was by sheer hard work between me and my stepsister, that luckily, the very next day, we managed to also get my stepfather put into respite care with her, so they were back together. This settled my mother, and helped my stepdad in his recovery.

They are now both back at home, with a care plan set in place for carers to call on them four times a day, for washing, cooking, hygiene and cleaning (my mother and stepfather pay for this too) and it gives me some relief, but to be honest, this last year has been a nightmare, not only with my diagnosis, but with having to be a carer to to my mother and stepfather with dementia as well.

I now have some time to think about my health. Along with other illnesses, my Alzheimer's Disease has caused me to have to readjust my life completely. I have been on a cognitive stimulation therapy course, and go on another one at the end of next month, but there really isn't much available for people with working age dementia and I find this so frustrating... it really does feel like we are being left behind in our needs.

I have an excellent dementia medical team however. The psychiatrist, my CPN who deals with my needs, and specialises with the dementia team is a godsend and has sorted many things for me, however I now have another battle to fight!

I have recently received a letter from the DWP stating that I am being took off my Incapacity Benefit and going onto ESA... and they have placed me in the 'work-related' category, saying that an adviser will help me take steps to get me back into work! - that will be a challenge in itself! :eek:

Anyway, thanks for reading, and I look forward to hearing your replies... thank you! :)
Appeal immediately. It seems to be standard practice that people are rejected the first time then get it on appeal. Its insane! Of course you can't go back to work!
I know its hard work but get your team to help.
 
Last edited by a moderator: