Stepdad diagnosed with dementia. How can I help Mum?

[Thedaffodilsarecoming]

My lovely Mum has suspected my stepdad has dementia for 2 years. Confirmed last week. They've been together for 10 years and live a long way from me. She was on her own for 15+ years before they got together. She was so happy before this. Now it's falling apart for her. I so wish she was round the corner so I could help her. This bastard illness is so cruel. Those of you living with a partner with dementia, what would help you most? I know practical support is important but I can't do much because of distance. I feel like she's so alone and all I want to do is make it all go away so she can go back to her lovely carefree retirement. Sorry I know I'm rambling but I don't know how I can make this better for her. I'm not so worried about him because he doesn't seem to be aware of what's happening.

Look up locally things like memory cafes often they have meet ups also for carers. It is a bastard disease and your mum will need all the support she can get especially as things progress. Look into homes now - even though it might be a long way off often places in the good ones are hard to come by so you can get his name on a waiting list. As it might be a time that it is too much for your mum to cope with ...DO as much preparing in advance so you are ready for the next stage. SOrry to be cruel but it is much better to be prepared. POA over your stepdad and also finances ,, this makes life easer. You should be assigned to a care worker every county seems to have different names that will come and assess and also help and advise. Reach out to every Association / voluntary group that you have access to .

I am so sorry for you ane your mum ... Over on the elderly threads there are a wonderful bunch of MN who provide suport as well.

Thank you Rosa. Some really useful suggestions. They currently live in a different country but I want to persuade my mum to move back as there seems to be a lot of support here. I'm trying to balance getting ready for when things are worse with not ruining their quality of life too soon by jumping to make changes. It's just hard to know how quickly this will progress. If we knew what he would be like in 6 months, a year, 5 years etc we could plan better. Just another reason to hate the disease for being unpredictable.

My father has had this for 7 years. He is looking only 55. The best support I can do for my mum is be there to listen. Let her vent as very rarely people ask how she is.she is under alot of pressure dealing with my father and she is forgotten about alot. I would also recommend arranging POA we didn't and are now going through the horrible process of guardianship as dad isn't capable of agreeing to poa.

I think if you can possibly get her to move back now, it would be the best thing - your stepfather should be able to adapt, but later it would be much harder.
She really, really, really needs to make sure that PoA (or equivalent where they live if they aren't moving back) is done ASAP as well as his will if there isn't one already. If he's done banking, bill paying etc online, she needs to get access (big headache for my dad as mum had been doing online banking and he had no idea what to do), and try and list out all bank accounts, insurance, investments etc.

If your Mum and SD are considering moving back to the UK, suggest they do it as soon as possible - people with dementia don't cope well with change, so getting your SD established in a new home whilst he still has capacity would be a good idea.

It's a hard disease to cope with (have been my father's live-in carer for almost 5 years now), but there are moments of sunshine and humour still to be had. I agree with others that you should get both types of POA in place as soon as possible, and make contact (once they're in the UK) with support services, also check that the various agencies are communicating with each other.

HTH.

Thank you for all your helpful suggestions. This is a new world that I need to understand so I really do appreciate your advice. I'm sorry that all of you have had to get to know it too.

Alzheimer's Association have great contacts locally & operate internationally - www.alz.co.uk

Also, less well know is the number of universities which have dementia research labs who, because of their work, help encourage & support both those living with the disease & their relatives... they are not neccessarily medical schools, some are undertaking interviews, creating tools & aids etc. Many need participants... and it could mean you meet others in a similar position to your situation