New and confused about Dementia disease.

[Lismum]

Hello everyone.
I had a few concerns about mum's memory as she occassionally would get forgetful, repeating the same question a few times throughout the day. Initially putting it down to old age, I thought it best to get her checked out.
After initially going the drs and them carrying out a short assessment (and mum scoring 4 out of 20 and being informed by the dr that the lower the score the better), mum was referred to memory clinic. Memory assessment performed in mums home in December 22. CT scan obtained beginning of Jan 23. Mid Feb I recieved a call from memory nurse informing mum had MCI. In April 23, after a consultation with psychiatrist, and a score of 75/100 on memory test nurse performed in Dec, mum was informed she had Alzheimers.
She was started on Donezepil once day 5mg. Due to side effects of this medication, she is starting on Galantamine next week.
Although living an independant life with seemingly little issue, I worry and wonder about when the next stage of the illness will appear. Mum lives by herself after the sudden death of my dad last July. Mum lives in a 1 bedroom flat. All on one level.
My question to you all as I don't know how to monitor this illness, is, how long, approx, did your relative live an independant life until they were unable to?
Should I be looking at day care facilities, nursing homes at this stage of the disease. Psychiatrist told mum she could have 'years and years.'
But I dont know how much time I have of my mum living independently.
Alzheimers advisor informed me to apply for council tax reduction and blue badge (for the future). Is this needed at this early stage?
Thank you all for reading. Just guess I'm in denial about the illness because I'm seeing little change in her.

 

[Sarasa]

Welcome to Dementia Talking Point @Lismum, I'm sorry your mum's diagnosis brought you here.
Everyone with dementia is different, so it is tricky to say how long your mum will stay being able to live independently. It would be a good idea to do things such as get Lasting Power of Attorney sorted and maybe contact Social Services for a needs assessment for your mum.
One thing that I would mention, is what is often called round here 'host mode'. That is the person with dementia is able to seem pretty together with people they don't see all the time. I spoke to my mum on the phone at least once a day and saw her a couple of times a week. I knew she was starting to struggle with various things, and her logic was getting very wonky, but I thought she was more or less OK. It was only after she moved into care I realised how confused and muddled she really had become as she could hid most of it for a short while. Your mum may well be fine, but do take any concerns neighbours or friends of your mum mention, just in case she isn't doing as well as you hope.
This is a very friendly and supportive site, and I'm sure others will be along soon with their tips and suggestions. In the meantime this fact sheet might be useful to help you and your mum.

Staying independent

People often feel happier if they can remain independent and in their own homes as long as possible. This section contains advice and information to help people with dementia remain independent for longer.

www.alzheimers.org.uk

 

[Izzy]

Welcome to the forum @Lismum.

I’m sorry to hear about your mum’s diagnosis but I’m glad you’ve found this forum.

Your mum might like to go to some local dementia activity groups if you have any near you. I’m secretary for a memories choir and we have some members who have a diagnosis but are independent enough to come to the choir alone. We have others who come with a buddy/family member. You might be able to find something suitable using this link -

Find support near you

Use our dementia directory to find local support services for people with dementia and their carers in England, Wales and Northern Ireland.

www.alzheimers.org.uk

You’ll find information about council tax reductions and disregards here. She should be getting a discount anyway if she lives alone. My husband got a disregard as his Alzheimer’s diagnosis put him in the category of having a severe mental impairment.

Discounts, disregards and exemptions on council tax

Some people will be eligible for discounts, disregards and exemptions on their council tax. All of these terms have different meanings, so it’s important to know the difference.

www.alzheimers.org.uk