Mum with early dementia

[Cookiecrumblepie]

Hi all,

My mum (in her 70s) has just been diagnosed with early dementia. I am very sad about it and it explains a lot of her strange behaviours and mood swings etc over the past year. It’s in the early stages so she will (hopefully) be fine for many years however I know she will need more support and care as the years pass and am looking for advice from those who have gone through the same.

What’s the best thing to do for someone facing dementia? Should they live closer to family? I really have no idea what is best so would love some advice.

Sorry I’ve just realised I’ve probably posted this in the wrong place!! New poster...I assume my thread will be moved or deleted :(

You can report your own thread and ask for it to be moved to the Elderly Parents topic, OP.

Hi OP very sorry to hear the news about your mum.

As with many illnesses, dementia can vary widely from one individual to the next. In some cases there is medication that can help slow the effects but it doesn't work for all and sadly wasn't appropriate for my mum.

For my mum, by the time the illness took hold - in her 80s and fairly rapidly progressing - moving her from familiar surroundings would have been the wrong thing to do. So we travelled a lot and it wasn't ideal but the better alternative for her we felt.

Do you have siblings to discuss this with? And is your mum able to discuss the future .. I know it's hard.

Thanks!!

I’ve asked for this thread to be moved

It’s important to ensure that she has forward panned her wishes in terms of medical treatment etc while she is still able to make those decisions. If you know what her wishes would have been, it makes it much easier down the line.

Also get power of attorney in place for health and well being and finances.

It’s a hard conversation to have, but it will make things so much less stressful down the line.

You’re probably a way off this, but there are all sorts of things you can get. Electronic calendars that remind you to take meds, go to appointments etc. Sensors for around the house and trackers that link to your smart phone, so you know if your loved one is wandering, watches with falls detectors in them, so you know if they’ve had a fall.

She may well have many years before any of this is necessary. I’ve known people be diagnosed with dementia and then hardly decline for years, but there’s a lot of stuff out there to help when it’s needed.

My mum is 76 and was diagnosed with early Alzheimer’s 18 months ago (dsis and I had pushed for this as she was constantly repeating herself and had lost her sense of smell even though the gp wasn’t at all concerned!). She lives with my dad and is lucky that I live around the corner from them so do pop in and see them 4-5 times per week.
DM is on Galantamine which I think does help. So far she has had three 6 monthly memory assessment tests at our local hospital (luckily her results have been the same on each test so far) which I attend with her as she forgets these appointments (I tend to help keep check on appointments etc just to help dad).
The first thing we did when she got her diagnosis was to arrange Power of Attorney and dad updated their wills. We also had a lady in from social services and she has put in place an emergency care plan for any future problems. We also got in touch with our local Alzheimer’s U.K., they are really good and helped with lots of info, they also hold carers course which we haven’t yet been on as it’s still (hopefully 🤞) early days. I would recommend contacting them as they are very helpful and also Admiral nurses are very helpful too.
I really worry about mums future as it’s such a scary disease but there is nothing we can do so just try to enjoy each day as it comes.
One simple thing which helps is that dad has put up a big wipe board in the kitchen and puts up all appointments and outings etc on it which helps.

Oh and singing! Singing is really good for dementia patients and mum goes to a local singing group which helps.

The first thing is to get the two PO A completed while she is in the early stages. Dementia takes many different forms so giving general advice is hard. Things to look at are,
Are her finances secure from scammers?
Maybe she will allow you to be a joint account holder on her c/a savings.
Does she have her name and address somewhere in her bag, in case she gets lost?
Would a white board of reminders help? Appointments and a ‘lock the door reminders’.
Also try to keep records of GP, Hospital, DoB, DoM, NI number and medications.
As time moves on, you may find yourself having to make phone calls on her behalf. This formation is asked for time and time again.
If she does deteriorate, make a note of the time, date, who you spoke to and what was agreed. This is the most valuable advice for me. LAs are overworked and it is easy for them to deny things. Quoting time and names gets thing moving.
Eventually I had to get my parents post redirected to me so that I could keep track for them.
Contact AGEUK who have the best website and telephone help for anything you are not sure of.
She might be able to claim a reduced Community Charge, now she has a diagnosis. It is worth checking out her LA website.

Also look into attendance allowance for her and carer's for you dad. a benefit check

It’s a rotten bit of luck for all.
In no order :
Take lots of films of your mum when she is in the moment and having fun. There may be times in the future when you want to show her being with the family and play these back when you visit.
Go on YouTube and search Teepa Snow. She has lots of teaching videos which are a tough watch but help prepare you for difficult times when the disease progresses. Her tips and suggestions for supporting your mum are absolutely worth knowing.
Your mum may be eligible for a Council Tax refund of 25 %.
Teach your mum future proofing skills now like using a microwave if she doesn’t already. My MIL never used one and now when it would help her she finds it too complex.
Embrace technology while she is alert.
Little things like key safes, getting her to use Alexa, pendants round neck etc, might all be easier to introduce now if you couch and introduce positively.

Thank you all, this is extremely useful :)

There may will be still periods of time when your real mum is operating normally and is absolutely in the moment. Grasp these afternoons and mornings to do things together spontaneously. ‘Golden time’ is a very precious commodity. Fifteen to 20 years down the line we still get a few glimpses of golden time and they make your heart sing.