Feeling lost...

[JackMcD]

Good morning,

Feeling a bit lost and not sure if anyone will read or reply to this - but might help order my thoughts writing them somewhere.

My mother lives alone about 500 miles from me. She is a very private person and never talks in any detail about anything personal. We have a good relationship despite this, but in recent years she has increasingly put me off visiting and phoning - preferring email and I realised at some point this was 'masking' how difficult she was finding coping, but stubbornly refused all help. From about 6 months ago she was obviously suffering from dementia and really struggling; not eating properly, mixed up about medication, not managing the stairs up to her flat. Her GP wouldnt talk to me at all without my mums consent, and my mum wouldnt give this and was also refusing all other offers of support.

A few weeks ago she was admitted to hospital and asked them 'not to bother me'; although I easily found her when there was no reply to email or phone. While she is over the chest infection, she is now frail, barely mobilising, and a shadow of her former self. Knowing she was going downhill she recently gave her lawyer power of attorney. As her lawyer has POA and the nurses recorded her initial desire not to bother me as 'son not to be contacted' in notes, the staff seem to presume something more sinister going on and the hospital social worker will only discuss her plans with her lawyer. I can only presume her plan was to be independent and avoid being a 'burden' to me; I doubt she realised the unintended consequences...

The consultant feels she no longer has 'capacity' to make decisions. I do know from conversations with her and her emails that she had realised in recent months that she needed to move into ground floor 'sheltered' accommodation and had started progressing this to the best of her ability. The social worker is determined however to get her back into her top floor flat which feels dangerous, inappropriate and against my mothers wishes.

I am now feeling completely lost and powerless and not sure what if anything I should be doing... back at home 500 miles from her pacing around and not able to concentrate on work...

 

[karaokePete]

Hello @JackMcD and welcome to the forum. You have come to the right place for information and support.

Given the position regarding the LPA I sympathise with your plight as you try to do your best for your mother.

If you want to talk it through with anyone the experts on the help line can be good, details as follows

National Dementia Helpline
0300 222 11 22
Our helpline advisers are here for you.
Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

Live on-line advice is also available in the UK and you can see the details of that if you follow this link https://www.alzheimers.org.uk/get-support/national-dementia-helpline/live-online-advice

Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.

 

[JackMcD]

Thanks karaokePete - I think I will try one of these lines of enquiry - probably need to clarify my thinking to determine what the questions are first but getting there!

 

[Izzy]

Welcome to the forum @JackMcD. I’m sorry to read about your situation but I hope sharing your thoughts here is helping. I’m sure you will get sound advice from the helpline.

 

[Pete1]

Hi @JackMcD, I'm afraid I don't have any experience in dealing with POA that has been awarded to a Lawyer, I would imagine it isn't a particularly agile way of dealing with immediate health and care issues that inevitably arise with someone in your Mum's situation. Have you spoken to the Lawyer directly yourself? Do you know whether your Mum had a formal capacity assessment (by the consultant or social worker) or was this just a comment that the consultant made through general observation i.e. it wasn't a formalized or recorded assessment? (as suggested the Helpline may be able to advise you on this situation).

I would imagine as Mum's condition deteriorates she may well find she can no longer use technology as she had previously e.g. email or text messaging which may further restrict your communication, so difficult when you are a distance away. As it sounds as if it is really affecting you now, would it be better for peace of mind to arrange to visit Mum and perhaps the other parties (Social Care and Lawyer) during your trip?

 

[JackMcD]

Really appreciate you helping me think this through. Good point - it was just a junior Dr telling me what the consultant said so no formal assessment as yet.

Yes spot on - she was relying on technology - Tesco online shopping as well as contact with me and others. I think that may have gone - she is now showing no interest in books, radio, computer or the diary she relied on to keep track of days etc. Just sitting by her bed and staring into space. She seems to have masked the severity until quite a late stage - or perhaps just needs to get in a better environment. Dr said its been assessed as Alzheimers and Vascular dementia which may well have an impact on changing trajectory - but Soc Worker made a good point about assessing her in own environment.

I'm just back from a visit and spoke to Lawyer - he seemed pleasant enough but a little out of his depth to be honest. Feels like he could be earning money from my mother just for acting as a go between... but early days and it could be useful her having an advocate in the same city... I had one conversation with the social worker before she spotted the comment in the records about not telling me - and said she didnt think she should talk to me any more. I am now just waiting on the lawyer and social worker having a conversation and one of them reporting back to me... hence pacing... when I hear back (hopefully today or tomorrow) that may be a point to phone for more advice.

 

[Pete1]

Hi @JackMcD, yes I found that gradually the technology became confusing and a bridge too far (certainly a new phone for example couldn't be used), and books were no longer an option (despite Mum previously being a veracious reader) - magazines (even free ones) and the local paper however did work, and could be read over and over. She also enjoyed TV and had never really been one for that.

It does sound like an assessment is required for your Mum in her own environment. I do understand and relate to the 'don't tell my son' as in please don't bother him, I don't want to be a nuisance, but that doesn't help your current predicament. I'm sure if Mum is still properly assessed in her own environment and deemed as still having capacity the social workers can ask if she would like you involved in helping organizing her support. All the best, keep posting and I'm sure others will offer suggestions too.

 

[JackMcD]

Thanks - appreciate that. Good points and just knowing others understand is helpful!