To ask what you wish you had known, when a loved one gets a dementia diagnosis

[LostInTesco]

Been contacted by DM consultant. Her mri shows dementia (she wouldn't give more details at this stage over the phone) but wants to meet with me and DSis to get a full picture of issues. She'll then meet with DM

Is there anything you wish you had known, or asked or that we should consider?

Not wanting to drip feed, just being concise, so feel free to ask questions and I'll answer, if I can

Social services can do assessment of capacity. I did the majority of the assessment over the phone (as my mum wouldn’t have coped with the whole conversation) and then they just visited her to verify what I said and asked a few Qs and could quickly see I hadn’t exaggerated or anything!

Another idea - alert her GP and stress that she needs to be given on the day appts when needed eg urine infections need to be treated immediately - they can cause a huge decline (which sometimes they only recover a little from)

I've seen a couple of mentions of Alexa being a useful tool. I would say only if the person in question was thoroughly acquainted with its use before they got dementia. My fil has alzheimers and often worries if just the radio is on and someone is speaking on it; he can't work out where the talking is coming from. An Alexa would terrify him.

@SaltedCaramelEverything - DM is very litigatious and I can see her attempting to defend any attempts at guardianship. She is very very emphatic that she is in control (of everything - of far more than you would expect one adult to have control of iyswim. Joint assets are hers to control etc). She is paranoid - DSis has to leave the house to talk to me, and I can't send things in the post as DM hides away letters: she opens them then bundles them up on huge bundles away from DSis

I have been talking to DSis and she is following this thread - the caution given that we shouldn't rule anything out regarding care homes etc has been taken on board so thank you

dear OP, this must be all overwhelming.
I kept my parent at home, and am quite willing to tell you everything about what this meant, for your sister to consider.
please private message me with any specific questions; it is a sensitive issue and I hesitate to write fully here, as obviously most people are not able to do this.
I guess money is not such an issue if your mother has assets, but just for information for others, your sister would only be able to get carer's allowance if your mother is in receipt of higher rate attendance allowance, and your sister gives at least 35 hrs per week of care to her, and your sister earns less than £110 a week, and your sister is not in receipt of state retirement pension.
and carer's allowance is currently about £65 a week. less than £10 a day to live on. which is appalling, considering how much these carers often save the state in cost of caring for disabled people.
anyway, I think you will have problems getting POA if your mother is not willing to sign, to agree to that. there is another way called deputyship, but that does involve keeping detailed accounts.
I think you and your sister should consult a solicitor asap, maybe get half hour free advice that many give, or ask local carers' centre, sometimes called princess royal centre. they have lists of local solicitors who understand the specialist issues.
it can be quite complicated. if your mother owns the house that your sister lives in, that could put your sister's position in jeopardy.
don't want to worry you, but forewarned is forearmed.
I think you may well have extra legal/financial issues, not just care/medical.

@LostInTesco that sounds very difficult. However one thing I have learnt is that the professionals have seen such a varied range. There are so many things my DM does that don’t feature in the standard Alzheimer’s society literature etc, but good health care professionals have seen it all before which is reassuring and then means they can give specific advice. The social worker went to see my DM on the pretence the GP had sent her to see how she was doing with her Alzheimer’s and the OT (who I really trust and has been a god send) was there to make sure it went smoothly. So basically they’re happy to tell a little white lie if that’s what you’d need to happen to get them in the house. And even if your DM would still be able to lie about her ability to cope, I think if you and your sister spoke separately they’d believe you. I have also had an issue with post - I now get things just sent to my house - which you may be able to do as NoK (as getting PoA sounds like a challenge). Reaching out and talking to any professional for advice would be a good starting point (I mentioned the admiral nurses before - they’re on your side and have been a fountain of knowledge). I wish you all the best