Supporting a person who lives alone and she can't cope

[joerob55]

She is only 68 and in the past 12 months she has been diagnosed with Alzheimer's and her short term memory is now poor, causing havoc with her daily life. She can't go out unaccompanied or prepare proper meals and lives alone in the UK. She was physically fit and vivacious and now (besides being prescribed Donepezil which hasn't stopped her deterioration), she get's very little support besides me and I'm worn out. I took her to her local Memory Clinic 12 months ago but they've not followed up with an annual review. Also an ENT CLINICIAN at her local Hospital ENT Dept said he'd make a direct referral to the Neurology Dept there over her Burning Tongue Syndrome some months ago but she hasn't received an appointment yet and she is in a lot of pain with it.
I'm doing my best to support both her and my 2 elderly parents in their 90's as they are quite ill themselves. I wonder why the new Alzheimers drugs aren't being trialled with people like her in mind who are still relatively young and up until recently both physically and mentally ok? She needs the new drugs now, not in 12 months. Any thoughts or suggestions. She has 2 sons but they both work and are busy with their families and only visit her very occasionally and maybe ring her once a week at most.

 

[try again]

I think you need to get social services involved or at least speak to her sons and tell them how she is struggling. Keep a diary of problems and show them to her sons.

 

[joerob55]

I think you need to get social services involved or at least speak to her sons and tell them how she is struggling. Keep a diary of problems and show them to her sons.

Thank you for your very reasonable suggestions. I've sent literally thousands of whatsapp messages to her over her meds, hospital and drs appointments and shopping etc and took her out socially but her sons are loathe to get involved more because of their own families. I'd already been in touch with local social services and Age UK and they both said she needs help but when they contacted her, she refused to engage with them because she is terrified of being put in care. She is very weepy and has constant mood swings. Don't know what to do. It's definitely a safeguarding issue though. Thanks again.

 

[try again]

Ultimately It is the responsibility of social services. Have you contacted them and told them she was a vulnerable adult?

 

[joerob55]

I have, I'll do so again - thanks.

 

[Grannie G]

I have, I'll do so again - thanks.

And again, and again, and again.

It`s wrong but carers have to keep pushing for attention for their person with dementia. It`s easy to be overlooked especially when provision is so thin on the ground.

What makes it worse, from personal experience, I know how tired carers are, their strength is sapped both physically and emotionally and still they have to continue to try to get some attention from the services.

 

[LouiseW]

Hi
I am wondering if her sons are able to keep thier distance because they know that you are looking out for their mum so they can abdicate responsibility ?

My sister did this for years saying she was "keeping a weather eye" on the situation she had this luxury becaude I was in there doing everything for Dad (we both live along way from Dad). It was only when I got carer burnout tht she woke up and became more helpful.

It's hard I know so take real good care of yourself, there is only so much you can do.

 

[Violet Jane]

I'm afraid that you need to be much tougher with her sons. They may be busy but she is their mother, not some distant relative. With caring, other people will let you struggle on and do more and more until you say no more. They may be selfish or they may be in denial about the situation (or both) and so you need to be very blunt.

I would make two lists and send them to her sons.

The first list should set out the problems with daily living that your friend has e.g. can't cook for herself any more / keeps out of date food / doesn't take her medication / doesn't know how to turn the heating on.

The second should list what you have to do for your friend, daily and weekly and on an ad hoc basis / when she calls you.

Tell them that you have your own parents to care for and are withdrawing support so they need to get involved with her GP and Social Services. Warn them that your mother is now at risk of harm. Tell them that you are giving their details to the GP and SS. That way, the sons can be under no misapprehension about how serious the situation is. Whether they will do anything is another matter....

 

[joerob55]

Thanks you all so much for your insightful and helpful replies which I've only just read. I've now contacted her local authority Social Services Care/Safeguarding team and listed her deterioration and what she can no longer do and mentioned the treatment she still needs for her burning mouth syndrome which she hasn't yet received. I've also forwarded her 2 sons contact details to the Local Authority Social Services and told her sons I'm reluctantly withdrawing my support from their mum for the time being as my own mother is back in hospital and my 90 year old father is distraught and frail after a recent fall. I also recently advised my friend and her sons to draft up a lasting POA which they have now just done. BUT I've not told my friend about me contacting social services because she will get very, very upset. I feel very guilty about this, but feel tough love is needed in this situation.

 

[try again]

Well done for caring and helping her.

 

[LouiseW]

Well done and I wish you all the best.

 

[Izzy]

That’s so good - well done.