1. MrsChristmas

    MrsChristmas Registered User

    Jun 1, 2015
    Hi there everyone

    It's long slow decline this dreadful disease isn't it?

    If I'd known when I first joined back in June 2015 what I know now I'd be shocked - 4 years of watching my Mother wither away to a shell of her former self.

    I remember when we went on a cruise together to the Caribbean, Mum swimming in the sea, just loving every minute of it. That was 2013 and the first signs started a year later.

    It was so sad on Sunday, I'd come back home to find Mum standing in my drive looking lost and forlorn, I'd nearly run her over. By the time I'd parked my car and run down the drive, Mum had disappeared. I rushed around to her home (she lives next door) to find the door locked, the TV blaring and I assumed she'd gone inside.

    Then I get a phone call from a neighbour asking me to come and collect my mother so I rushed down the road and found Mum just standing in the drive of her old house looking lost. I asked her if she was okay and she told me she waiting for my late father (died several years) and I told her that he was not with us anymore (now realise that was a big mistake) and her face crumpled, she didn't believe me and cried. Mum didn't know who I was, why she was there, except that my father had 'gone to the dogs as it was Monday' (this was from years ago) and she was waiting for his car so he could pick her up. It was all so sad and heartbreaking.

    The neighbour was furious as she'd already taken Mum back home once that morning and Mum had walked back to her old house looking for my father.

    I took her home and found the tap running in the sink and the place in a mess. Mum couldn't remember why she'd left. She was dehydrated with swollen feet, dishevelled and smelt as she hadn't showered or washed that day.

    I have spoken to social care many times as well as Mum's GP and the sticking point has been that Mum has stubbornly refused all outside care (she's nearly 94) and the GP has diagnosed that Mum has Capacity.

    I am now going through the 3rd attempt to get Social Care and the Dr involved and I am not sure how successful I'm going to be this time...it's like Groundhog Day. I'm debating whether to contact the Police in case Mum wanders again....

    I've explored Attendance Allowance to get Mum into the system but that has failed because I can't put Alzheimer's on the form because Mum has not been diagnosed and won't go to her GP and GP says she has Capacity. Mum will not socialise or go anyway unless I take her out but said to me on Sunday that she is desperately lonely.

    The strange thing on Sunday after all of the upset, I was in mum's kitchen making her cup of tea and there she was sitting on her settee with her feet up watching her favourite TV programme!

    Mum is in pretty good health physically except for her Glaucoma, swollen ankles.

    I am pretty busy running a business and my home and I'm a bit concerned that Mum wanders off again to her old home to find my father that I won't be around to sort it out. I know the owner is not going to be very happy finding my mum wandering around her house looking through the windows. I had to cancel a client Sunday afternoon because I had to help Mum and my business is my only source of income.

    I have spoken to my brother about this (he lives miles away) but he says that, short of telling SS and GP there is not much we can do and he suggests that if anyone calls me (which they will do as I live next door) I'm to tell them to call the Police.

    Have we covered everything? I know I am not alone and there is thousands going through what I am going through but I am terrified that Mum will get knocked over or cause an accident if she is wandering around on a busy road. She is very unsteady on her feet and has had some falls already this year.

    I'm just worried and concerned that it will happen again and is there anything we can do to stop Mum being a danger to herself and others.
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    N Ireland
    This is a troubling development and I understand your worry.

    Yes, involve the police and ask them to record incidents as a paper trail will help with SS. Unfortunately, it does seem to require a crisis to get attention in circumstances such as these.

    There is a Society Factsheet that may help with this and you can read/print it by clicking the PDF line of the undernoted link
    Walking about (501)
    PDF printable version

    I wish you all the best with this and hope you get the help that is needed.
  3. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    If police get called to your mum,then they will send a referral to SS. This happened with my mother-in-law when she called police saying there was an intruder. There wasn't but they referred her to SS ,who phoned me . I already had carers etc. in place as mother in law was self funding. This sounds like you need to wait for a crisis. Hard, I know. But this might be the way forward to get her support. To be honest, once the wandering starts,it's there and will continue. I also wonder whether your mum still has capacity, in my non medical opinion, probably not.
  4. MrsChristmas

    MrsChristmas Registered User

    Jun 1, 2015
    Hi again,

    Thank you Pete and Rosetta for your kind thoughts. Rosetta I agree with you about Mum's capacity - its like 'the lights on and no-one's home'.

    I will speak to the Police today.

    SS have called me to say that, as Mum has said many times that she 'doing fine, thank you very much' they are bit limited about what they can do. One idea is for them to speak to Mum on a mobile on a loud speaker to get an idea of her mental abilities. Another option discussed was to arrange for some meals to be delivered as a way of gaining entry on a regular basis, IF Mum agrees to someone coming into her home on a regular basis...

    Thank you for the advice about wandering I guess I will more incidents to deal with in the future.

    I have spoken to the owner of Mum's old house and to thank her for helping Mum on Sunday. She told me that the same thing had happened about two weeks ago, she'd found Mum sitting in the corner of the front porch with her shoes off! Apparently Mum was well dressed and had been into town (I find this hard to believe because Mum can barely work more than a few metres without help). The poor woman had to walk Mum back to home and she is disabled.

    I've requested that she not do this again but to call the Police in future.

    So Rosetta the wandering has started with a vengeance.
  5. Viva

    Viva Registered User

    Oct 10, 2018
    Hi there

    It really sounds to me like your mum has lost capacity. Is there any way you can get her a GP referral to the local Memory Clinic so that a psychiatrist can assess her? We managed to get my husband's Mum to the GP by telling her she just needed a check-up as it's normal for someone of her age etc. Luckily the GP could see she wasn't okay mentally and a referral was made. However, it did take a crisis at home before she was admitted to hospital and then onto a care home. If your Mum is wandering then she is a danger to herself and it feels to me like she isn't safe at home and needs at least a carer going in to support her. I hope you find the right help for her. It's a dreadful illness but sadly there doesn't seem to be any help available until doctors are involved and professionals become aware of the person's existence. My MIL was under the radar for years until she deteriorated sufficiently that she was assessed. Best of luck and all being well you will get the support you need for her.
  6. MrsChristmas

    MrsChristmas Registered User

    Jun 1, 2015
    Hello everyone

    Thank you for your advice, so helpful Rosetta, Pete and Viva.

    Mum's GP was supposed to visit Mum today (on the pretext the ' GP hadn't seen Mum for a year') but he had an emergency and it has now been re-scheduled for next week - luckily - on my morning off from work so I volunteered to meet the GP at mum's home - which the surgery was very happy about. Apparently, Mum's reaction to the GP phoning to make an appointment to visit was met with Mum saying 'I'm fine, thank you' whilst trying to fob the surgery off. Thank goodness they persisted!

    The GP and staff have been wonderful so far, really understanding my worries and saying that Mum will get the help she needs. I am trying not to get my hopes up - I've been here before many times before. It has been an uphill struggle to even get to this point - 4 years. I think Mum has been very clever or lucky with her good health to stay independent at 94.

    Thank goodness for this site - it's been a Godsend. I have never felt so lonely with a sibling miles away - detached, physically, emotionally and mentally. I don't think people understand unless they've been through it or worst they just want to tell you their stories.

    I think the GP is a bit worried about Mum's swollen ankles, as well as the wandering.

    I am sorry to ask again for help but I feel a bit lost with no-one to talk to about this.

    How should I handle the meeting with mum and the GP? Should I stay silent unless asked? Should I keep a list of incidents for the GP to see? I am very conscious that the meeting is between Mum and her GP and is private but obviously I need to contribute.

    Has anyone been through this and have any advice how to handle this potentially sensitive and difficult situation?

    Mum is very suspicious and secretive and will probably resent me being there.
  7. Helly68

    Helly68 Registered User

    Mar 12, 2018
    I think when this sort of thing has come up before, people have suggested emailing or sending a note to the GP beforehand, so they understand that your Mum has dementia and won't understand the implications of the appointment. You might want to put a few points in about the things you are most worried about.
  8. canary

    canary Registered User

    Feb 25, 2014
    South coast
    I agree with @Helly68
    The other thing I used to do with mum was to sit behind her so that the doctor could see me, but mum could not. When mum answered questions I used to nod or shake my head and make silent facial expressions to show whether I agreed with her answers!
  9. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    I seem to remember from your previous posts,that your brother discusses everything with your mum and makes her part of the decision making process? I just wondered how is he with the GP coming round.
  10. MrsChristmas

    MrsChristmas Registered User

    Jun 1, 2015
    Hi Rosetta

    very good point Rosetta.

    About a year ago I told my brother that I was busy running a business and I couldn't do as much as used to and couldn't guarantee to be around to deal with an emergencies with Mum. I hinted that we would have to persuade Mum to accept some sort of outside care, or that he might have to come to see her more often to help out, or we just left Mum to get on with it. I left it that it was his decision.

    Well, my brother still comes to see Mum every 3 months but now he does all of the dirty work...sorting out rubbish, dealing with unpaid bills, hoovering, getting rid of cobwebs, dusting, taking rubbish to the dump, shopping...and that's just for starters! Imagine doing three month's of housework in two hours! That's on top of paying her bills, organising gardeners. buying a fridge, organising electricians and plumbers.....

    All talk about including Mum in all the decision making process has stopped.....funny that.

    I did mention to him about the GP coming to see Mum his reaction was muted, I guess I was expecting affirmation but no it was more unease.

    I really don't feel my brother agrees with me contacting Mum's GP, probably thought it was too drastic a measure. Maybe he thought we could just carry on and that the Police would deal with Mum wandering, if it happened again. He said nothing about consulting with Mum first but more what we will say to Mum when the GP turns up. I admit that I hadn't thought of that I was more driven in making sure Mum was safe, well fed and looked after.

    We are very different.
  11. MaNaAk

    MaNaAk Registered User

    Jun 19, 2016
    Dear Helly,

    This is a good idea but I think emails and notes need to be followed up as my GP
    did nothing concerning the note I gave to them when I was struggling to get dad to the doctor.

  12. MaNaAk

    MaNaAk Registered User

    Jun 19, 2016
    Dear Mrs Christmas,

    Six months before dad went into the home dad got out of the house at 4.30 am and went up the road in his pyjamas.
    Luckily a neighbour found him and brought him back to their house. They tried calling me but I was in the land of nod so they called the ambulance. They also called my brothers who both called me and eventually I was alerted. They I don't know why they didn't call my landline as that is probably another story
    and my mobile was off as this was the last thing I was expecting at this time.

    It is because the ambulance was called that we got a little action with the Alzheimers Society enabling me to get hold of the Herbert Protocol pack in case it happens again and recommendations for a door alarm available from Dementia Friends who also got in touch. Meanwhile I made our house more secure but eventually you will need to involve carers and in the future a care home. Yes! I thought of the money involved but you will have security for your mum and you will have a bit of you life back. She is so lucky to have you.

  13. MrsChristmas

    MrsChristmas Registered User

    Jun 1, 2015
    Hello there again,

    Just a question about my Mum, following on from what happened a couple of weeks ago with her wandering.

    Social Care have been contacted as well as Mum's GP who was going to call to see Mum last Tuesday (this week). I was supposed to go with the GP to see Mum but I had a dentist's appointment which I just couldn't miss. I did as you advised and wrote a long email telling the GP everything that had happened over the past couple of years, about how Mum spends weeks on her own, no access to food, stained clothing, poor memory and about the wandering incident.

    I have not heard anything since and I appreciate that wheels do turn slowly with Agencies. When the Surgery attached to Mum's GP rang me to say they'd rung Mum to make an appointment she came out with the old story about she was 'fine thank you'. The GP has used the excuse that they'd not seen Mum for over a year and were worried about her swollen ankles.

    Mum has stipulated on her medical records that she doesn't want her daughter (me) to be involved although I've never been told why (I can guess tho.)

    I've been working long hours this week and have not seem my Mum but can see her home from my house. I have not seen any movement, curtains closed and blinds down all day - although this is pretty normal for her. I normally hear her Tv but it has been very quiet but the lights are on in her lounge so I'm sure she's okay.

    All the people around where we live have been advised to contact the Police if they see Mum wandering around.

    I was just wondering what will happen next, if anything?

    As Social Care and Mum's GP have been contacted are they obliged to inform Mum's family?
  14. Sirena

    Sirena Registered User

    Feb 27, 2018
    SS and the GP always contacted me in those sort of situations, her GP was very proactive. But it depends on the GP, and also as your mother has requested they do not involve you, they will follow her wishes if they believe she still has capacity. If they do think she has capacity, they cannot force help on her if she says she doesn't want it. But you've started the wheels turning.
  15. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    I agree with Serena, a lot depends on capacity. The GP for my mother-in-law was quite proactive although I didn't get notified of every appointment. My mother-in-law was housebound, so if there was a visit from medics,it was easy to make myself be there for anything important.

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