Dementia

[Col2]

My mum (79) is becoming forgetful and over the last few months her health has deteriorated. She lives on her own (husband dies a few years ago) and I am in the process of getting doctor to test and diagnose (assuming this is what they are doing). I expect to hear on Tuesday initial prognosis.

I have POA over hear affairs but have small family my side and basically if comes down to me (and my wife) to sort stuff.

Everyone I speak to tells me that the next few years will be very difficult and it will be even more difficult for me. I have to say I am probably not practically or mentally prepared for this basically because I have no idea what is coming.

I am 6 years from likely retirement and still need to work. Given the absolute state of the health service I have no idea what support might be available or if it just falls on myself to sort. Appreciate this might be insensitive or selfish.

Any views/advice is welcome.. Thanks

[DaveF]

I've only experienced this from seeing the impact it had on my wife as her Dad went through it, but every situation will be different. With him, he was diagnosed towards his late 60's but was well enough to stay at home for a number of years before it became too difficult / safe for him to do so. The next few years in a care home were extremely hard on her as he deteriorated into a shell of his former self.

What will be important is that you have all the help and support you can get. It won't be an easy journey, nor a cheap one if a care home is in play.

[Billy Whizz]

It’s tough when anyone in the family gets ill
I’ve gone through something like you’ve described above with my mum. I can’t comment on your personal situation re work unfortunately
Obviously get her checked, but there’s loads of support out there for you and her
Her Dr will advise you once the tests are done, but you get support from EDC with OT’s etc, she can also get visits from carers to help her with personal care and cooking etc if needed
There’s also the Alzheimer’s society that can help with visits to the house and visits for days out etc

If you want to PM me once diagnosis has been confirmed, feel free
Dr/Social worker should help you get someyset up if necessary

[Jack]

My wife and her sister are 2 or 3 years down the road of where you are looking after their mum.

Your first port of call should be an organisation called Care for Carers.

They will guide you through everything you need to know and help you with just about everything from giving support to filling in forms for Local Council help for house adaptations, financial help and home helps, NHS, to organising events for you to get a bit of respite.

They've also got all the stuff you'll need to know to help you understand what your mum is going through and suggest ways to help you cope.

Those things they can't help you with they will be able to put you in touch with the right people.

My wife is still in touch as her mum goes through the different stages.

They have been invaluable.

https://www.care4carers.org.uk/

Good luck.

[oconnors_strip]

There are lots of charities who can help you and also your mum, especially about what support is there for you both.

Look at https://www.agescotland.org.uk/our-impact/about-dementia

There might be a link worker at your mum’s GP surgery who can also help, have a look on the surgery’s website or ask at reception.

[lapsedhibee]

My wife and sister are 2 or 3 years down the road of where you are looking after their mum.

Your first port of call should be an organisation called Care for Carers.

They will guide you through everything you need to know and help you with just about everything from giving support to filling in forms for Local Council help for house adaptations, financial help and home helps, NHS, to organising events for you to get a bit of respite.

They've also got all the stuff you'll need to know to help you understand what your mum is going through and suggest ways to help you cope.

Those things they can't help you with they will be able to put you in touch with the right people.

My wife is still in touch as her mum goes through the different stages.

They have been invaluable.

https://www.care4carers.org.uk/

Good luck.

If your wife and sister have the same mum, doesn't that make you a yam? :dunno:

To the OP: you may be pleasantly surprised at the help you get through her GP, NHS district nurses, and the Council, as your mum gets older. You won't be entirely on your own, even if your family members don't chip in as much as you'd like.

[speedy_gonzales]

It's been 8 years or so since my dad was diagnosed with Dementia/Alzheimer's.
My mum was quick on the ball and reached out to a charity called Vocal (https://www.vocal.org.uk/).
They have been very good at supporting her, providing information for benefits & support available as well as dealing with the local authority (Midlothian) as dealing with the council can be like swimming through treacle. They have also gave her a lot of sound legal and financial advice.
Along with that, there is a charity called "The Dementia Cafe" where those with the illness along with loved ones/families can go and meet others to share and support.
My dad is on the cusp of going to a nursing home now but the support my mum has received has been invaluable.

[Peanut Shaz]

I went through Vascular Dementia with my late Mum and am currently in the same situation with my Dad (Alzheimer’s and Vascular). Obviously each case is different but if I’m being honest it’s a very difficult time for all involved. I suspect your Mum will get an appointment in time at the memory clinic after the GP has decided that dementia is the likely diagnosis. Once confirmed by the clinic you will likely be referred to Alzheimer’s Scotland and be allocated a link worker who will be assigned to you for a year. They are worth their weight in gold for support advice and advocacy work. Depending on the situation you should be able to access Social Services, OT’s, etc. I would say though that in my experience communication between agencies is not great and you have to be prepared to find out a lot yourself and be strong enough to ask for help when required. The road ahead will be difficult and depending on what type of dementia you may have to deal with more than just memory loss. At the moment we have aggression, insults, 999 calls to the police, refusing to comply with carers or family re personal care and such like. All can be well for days/weeks and then you hit a bad spell to navigate your way through. Sorry to sound so negative but it isn’t a pleasant illness for anyone involved, most of all the patient. Happy for you to PM as I certainly could have done with knowing from experience what lay ahead. You may find this useful as well. https://forum.alzheimers.org.uk/

[Jack]

If your wife and sister have the same mum, doesn't that make you a yam? :dunno:

To the OP: you may be pleasantly surprised at the help you get through her GP, NHS district nurses, and the Council, as your mum gets older. You won't be entirely on your own, even if your family members don't chip in as much as you'd like.

Wife and her sister 😆 Post amended!

[Col2]

Thank you for much for the advice, extensive with some clear links for more information. It is very much appreciated.

Will see what the next few days and weeks brings in terms of results. And will start to build a plan.

Thanks again. 👍👍👍

[Col2]

Thank you for much for the advice, extensive with some clear links for more information. It is very much appreciated.

Will see what the next few days and weeks brings in terms of results. And will start to build a plan.

Thanks again. 👍👍👍

[Hibernian Verse]

I am running the Edinburgh Kilomathon for Alzheimer Scotland in April and will be raising money for them.

We lost my Gran to Dementia 6 years ago, and it is a horrible disease that I really hope we don't have to re-visit as a family.

If the OP doesn't mind I'll post a link to the fundraising page nearer the race if anyone wants to donate (I'm sure a number of you already do on an ongoing basis).

[Col2]

I am running the Edinburgh Kilomathon for Alzheimer Scotland in April and will be raising money for them.

We lost my Gran to Dementia 6 years ago, and it is a horrible disease that I really hope we don't have to re-visit as a family.

If the OP doesn't mind I'll post a link to the fundraising page nearer the race if anyone wants to donate (I'm sure a number of you already do on an ongoing basis).

Absolutely👍👍