1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. Berryleaf

    Berryleaf Registered User

    Jun 15, 2016
    Hi everyone

    Mum lives alone but in a community where lots of people know her.

    Family members support her, but we all work full time (young middle aged so giving up work isnt an option) and live between 30 mins to an hour away. I feel like we do a lot (all chores and more) and most of us are there for a full day each a week, plus a PA visits. Though mum sometimes has up to three days alone.

    Neighbours are increasingly concerned by Mum's behaviour (lately in the street partially undressed). We totally understand how this happens and whilst we are concerned we dont know what more we can do.

    I dont know why I'm posting this except to say that today has felt like a particularly difficult day as a 'distant' carer and I feel so miserable. I hate the anxiety of not being able to be there for Mum every day, it feels better when I'm there and taking action. I suppose these well meaning phone calls just underline how impotent I am and that's tough.
  2. Slugsta

    Slugsta Registered User

    Hi and welcome to TP, I'm glad you have found us.

    Yes, caring from a distance can be particularly hard, I understand your frustration! However, if your mum is out in the street, partly dressed or otherwise, she is putting herself at risk. As such it might be time for her family to think very seriously about whether it is time for somewhere that can watch over her 24/7. I don't think anyone ever wants it to come to this but your mother is now very vulnerable :(
  3. Kjn

    Kjn Registered User

    Jul 27, 2013
    Are social services involved at all with your mum , if not maybe a call to say she is vulnerable.
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello Berryleaf

    You have recognised your mother needs more than the family can provide and those of us who have been there , can see she is not only vulnerable but at risk.

    Your mother's neighbours are obviously concerned but they cannot take responsibility however kind they are.

    The advice to consider residential care is good advice. She could come to harm and it's a risk you don't want to take
  5. father ted

    father ted Registered User

    Aug 16, 2010
    Berry leaf, it is marvellous that you and your family pull together to support your Mum and you are all doing as much as you can.

    But you are right caring at a distance, you are impotent and it sounds as if Mum is now needing far more support than all of you can provide. It is time to seek further support as your Mum is at risk in her current situation. You know that too that's why you posted. In the first instance contact Social Services to see what they can provide but as increasingly what they offer is woefully inadequate you will have to look further into the future to what may be required weeks, months and years down the line.

    I wish you well.
  6. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    Radcliffe on Trent
    I recognise a lot of what you say. My mum was in a very similar situation. I was the nearest relative and lived 60 miles away. I went for two days every week (having retired from work). For a long time we didn't want to take her away from the place and community she had lived in all her life. But as her confusion got worse she was no longer safe. She didn't wander because she had increasing mobility problems, but in the house she was equally vulnerable. We organised carers mainly to check on her twice a day; one of them found she had turned the gas on by mistake - that could have killed her and the next door neighbours too. Then she had a fall and couldn't remember to press her emergency button so was there probably for hours before the carer came in and found her.

    So we persuaded her to move to a care home near us. Thankful she was self-funding so we didn't have to argue with SS whether this was necessary. I can't say she was happy there but she had been equally miserable and lonely at home and at least she was safe, warm and had decent meals. She could see her family a lot more often. It was the right decision for her and it might be for your mum too.

    I'm sure the neighbours think they're being helpful, and it is useful to know the facts of what is happening, but please don't let their opinions influence you about what you should/shouldn't do. One thing I have surely learned on this journey is not to judge what other families do; no outsiders really know what is happening within a family and therefore need to back off from giving their views (unless actually asked for).
  7. elvismad

    elvismad Registered User

    Jan 8, 2012
    My mum has just moved in to an assisted living with care scheme with 24/7 care on site -2 weeks Monday. The place and staff are lovely. Mum always wants to go out and had told staff I have abandoned her.
    She was miserable and lonely in her old flat where she lived on her own on the 8th floor of a tower block and now has a 1st floor flat overlooking a courtyard garden. She has private carers still that take her out to her clubs (self funding) 3 times a week and more opportunity for company when I am at work (7-5 days a week). I have deliberately backed off to try to help her settle but am still visiting (just not every day). Last night I had a voicemail where mum was sobbing and the scheme carer was trying to calm her telling her this was her home and look how beautiful we had made it. I called the scheme back and checked with them that she was safe but asked not to be put through to her as I didn't want to exacerbate the situation especially if mum had called down. I should mention that my brother had spent the day with mum from 11-5pm when mum settled down for tea with the other residents. I find not seeing her torture and I am constantly anxious but I know she is in the best place for her own safety and wellbeing.
  8. Delphie

    Delphie Registered User

    Dec 14, 2011
    Hi Berryleaf :)

    I know it's not easy, but try to see the phone calls as helpful. You can't be there all the time so the neighbours telling you what's happening is actually a very good thing. Armed with this information, you are in a position to make the right decisions for your mum. Imagine no one was bothering to call and your mum was out and about, half dressed, maybe getting lost, and you knew nothing about it, at least not until something bad happened.

    In your shoes I'd honestly say a big thank you and ask the callers to keep the information coming, and reassure them that it's being acted on.
  9. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    Radcliffe on Trent
    #9 Pickles53, Sep 17, 2017
    Last edited: Sep 17, 2017
    Deleted - duplicate post
  10. Berryleaf

    Berryleaf Registered User

    Jun 15, 2016
    Thank you

    Thank you all for your kind words and advice. I think I just felt the need to vent really, as I dont know anyone with similar circumstances.

    Ironically since posting this we've been with Mum 24/7 as she became delirious and was diagnosed with a UTI. Maybe the recent behaviour was a prelude to that.
    Anyway, she's a lot chirpier tonight.
    We'll have to see if / how she recovers. Prior to this I would've said that Mum isn't quite ready for a care home yet. She does so much for herself here as she knows it so well and has deeply ingrained routines. Either way we'll be looking to step up her PA visits first (whilst looking around at CH options).
  11. leslyz

    leslyz Registered User

    Oct 24, 2015
  12. copsham

    copsham Registered User

    Oct 11, 2012
    hi Berry leaf
    When my mother was in early stages of dementia, you could guarantee that when she had a downward dip, that she had an infection. We occasionally forgot this pearl of wisdom but when we did remember we could sort it out and she was on an even keel a bit longer. Now that she is in later stages this unfortunately does not apply.
  13. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    East Midlands
    I think having a famil meeting if you haven’t done so already is a good idea so you can all discuss the way forward.
    It is good that the neighbours are telling you what is going on & your mum’s behaviour could have been the prelude to her infection but i’m glad you are stepping up the PA visits.

    There are also telecare aids that you might consider in your mum’s home too.

    It is awful when you have to consider more care as in a care home, i’m in the same position with my mum.

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