Mum has Alzheimer's disease

[dominicalady50]

Hi everyone how are you all doing?

I am new here, just signed up. Here's my story....

My mum, who is 84, was diagnosed with Alzheimer's May 2018. It was a shock to all our close friends and family.

Mum was always had a sharp memory and very independent up until 2017 when she started experiencing dizziness and being quite forgetful.

It grew steadily worse until I had to arrange with my boss to start working from home. She's now getting more confused, frail, getting confused with dates, not able to manage money etc although I do take her to the post office and encourage her to pay her bills when I'm I'm with her, but not on her own. Thankfully I have LPA for her finances and health.

Her mobility has been also deteriorated recently. She can hardly walk and her left leg drag and she's very unstable. Not sure what is causing this. Could this be linked to the disease? She was given a couple of walkers to aid her stability.

We have a doctor's appointment this afternoon.

I am also carer for my older sister who has special needs. My mother was her main carer all her life before she became ill. So now I care for both plus I have another older sister in residential care but we get to see her 2 x a month.

I've been a young carer since age of 5 years old and helped my parents look after both sisters. Sadly, my father died 2004. However now I'm looking after everyone.

I'm interested to hear from those who are also carers for people with Dementia or and how you have coped.

I know it's not easy. ..

 

[nellbelles]

Hello @dominicalady50 a warm welcome to TP
I hope the GP visit helps with some answers to your Mum’s mobility issues.
That is a heavy load for one person to deal with, is there no way you could get some help? Maybe Carers just coming in to help with personal care?
I hope now you have found us you will continue to post for support from the forum.

 

[canary]

Oh my goodness @dominicalady50 it doesnt seem to stop for you does it? I was caring for my mum with Alzheimers (now passed away) and also for my OH with cognitive decline and I used to feel that I needed to cut myself in two so that I could look after both of them. I expect you feel like that, only more so!

Firstly, are your mums POAs registered with the Office of Public Guardians? If not, do that now as it can take a few weeks to register and when there is a crisis, you need them straight away.

Are you going to go to the doctors appointment with your mum? If you go in with her it is assumed that your mum has given permission for you to be told things, so you can listen to what is said and you can also ask the doctor questions.

 

[dominicalady50]

Hello @dominicalady50 a warm welcome to TP
I hope the GP visit helps with some answers to your Mum’s mobility issues.
That is a heavy load for one person to deal with, is there no way you could get some help? Maybe Carers just coming in to help with personal care?
I hope now you have found us you will continue to post for support from the forum.

Thank you so much for your warm welcome

I have 2 close friends who look after my mum every Tues (and sometimes weds) to allow me to go into the office. We have known them for more than 10 years and mum is very comfortable with them. The Carer's Advocate Service are also really helpful.

The GP will chased OT and has referred mum to have another MRI scan.

 

[nellbelles]

Hi @dominicalady50
Thanks for the update and I’m glad you have help in place it’s important that you look after yourself.
At least the GP is proactive for your Mum I hope you get some answers soon.

 

[dominicalady50]

Oh my goodness @dominicalady50 it doesnt seem to stop for you does it? I was caring for my mum with Alzheimers (now passed away) and also for my OH with cognitive decline and I used to feel that I needed to cut myself in two so that I could look after both of them. I expect you feel like that, only more so!

Firstly, are your mums POAs registered with the Office of Public Guardians? If not, do that now as it can take a few weeks to register and when there is a crisis, you need them straight away.

Are you going to go to the doctors appointment with your mum? If you go in with her it is assumed that your mum has given permission for you to be told things, so you can listen to what is said and you can also ask the doctor questions.

Hi Canary, so sorry to hear about your mum. It is quite exhausting at times

Yes, the LPA has been registered with OPG. I accompany my mother everywhere as she cannot go about on her own anymore like she used to. She's very unstable or can hardly walk sometimes and gets confused.

I have a car so I drive her around.

 

[dominicalady50]

Hello friends ?

It has been nearly 1 year since been here. I thought I would give you all an update on my Mum.

Sadly, things are slowly declining for my mum ? I took her back to the Memory Clinic @ Mile End Hospital for a re-assessment. We saw the same consultant who diagnosed her in May 2018.

The consultant has noticed the sudden decline. Mum is no longer able to stand independently, she now uses a wheelchair for outdoors. She has 2 frames indoors but struggles to use them because she has difficulty moving her legs, especially her left leg. As a result of this, she has had a few falls over the last few weeks. If she's walking with a frame, or holding onto things, I have to be there to support her.

She's up several times every night (which means I also get up several times a night just to make sure she's safe getting to the bathroom or sometimes wheel her to the bathroom in her commode).

The incontinence has got worse in that she doesn't realise when her pads need changing. At times she gets confused as to where the bathroom is and will try to go downstairs.

Mum had always loved reading, but now when she tries to read she manages one line then she struggles with the rest - and doesn't understand what she's reading sometimes. These days I normally read to her but I do encourage her to read a couple of lines every so often. Every day I tell her what day it is because she's very disoriented.

I assist with bathing and dressing every day. Thankfully mum can still brush her teeth and feed herself.

All in all, she can no longer be left on her own. Mum needs to be monitored 24/7, however, I'm grateful for the network of 4 close friends to take it in turns twice a week to stay with mum during the day to give me a break - and especially as I also care for my older sister who has special needs. Good thing is, my sister is quite independent around the house (but I do her bathing, laundry, cook her breakfasts/meals and get her ready for Day Centre 4 x a week) and she can dress and feed herself. I have another older sister in residential care but she get to see her every 2 weeks.

My mother was the main carer for my oldest sister but now I'm main carer for both.

Update on LPA: LPA for both Health and Finances have been registered, so I'm happy that's sorted. She has also been allocated a social worker who is really helpful and supportive.

The Hospital consultant suggests that Mum is nearer the later stages of Alzheimer's.

Does that sound about right to everyone?

I'm very keen to hear about other experiences.

Thank you for taking the time to read this, sorry it's so long lol. I haven't used the forum for sometime, been so busy trying to manage everything and trying to rest as much as I can.

Fiona ??⚘

 

[nellbelles]

Hello @dominicalady50 good to see you back on the forum you certainly understand the meaning of caring..
I hope you have taken time for you in between all the caring for your family members sometimes I’m sure you find life Difficult ..
I hope you will continue to post now you have returned to DTP

 

[dominicalady50]

Thank you, it's good to be back in the forum I have been reading a few other carer's experiences recently which has been very encouraging.

Yes, thanks to my network of friends, I've been able to have some 'me time' and it's been quite consistent. I've had some good days, and some really challenging days with mum.

She's been fast asleep for a while so I hope to get a good night's sleep myself