Mum keeps saying "What do I do now?" "Tell me what I need to do".

canary

Registered User
Feb 25, 2014
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South coast
Whilst the LPA instructions point you to the mental health act which says that no matter what, the person still has the right of refusal - interpreting this clause with someone who has Alzheimer's is a very different ball game.
I believe that the wording in the Mental Health Act says that the wishes of the person have to be "taken into consideration", even if they have lost capacity - which is not quite the same as saying that they have the right of refusal.

If they have not lost capacity then they do have the right to make "unwise decisions".

It hinges on whether or not they have the capacity to make that decision.

Edit to add - here is a link o the Mental Capacity Act code of practice, which is long, but you might find helpful, especially chapter 5 which talks about making decisions in their Best Interest
 
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doingmybest1

Registered User
Feb 28, 2017
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Hello to you all.
Thank you MartinWL for clarifying about the Mental Capacity Act 2005. What you have written now makes it clear to me. I have to admit, reading through it, I was struggling to understand what as Attorney I needed to do. Thank you again.
Lollyc - thank you for your post and experience. I'll certainly research Mirtazipine but Mum's rarely taken even pain killers because she no longer understands dates / times so but I'll definitely keep that in mind. When she's had to be on antibiotics for UTI, I've had to call her as I live elsewhere, at the time she's supposed to take tablets - and then trust her when I'm giving her instructions over the phone to take the tablets.
Lollye what you've also shared with your experience is that often times we do things - like taking our PWD to clubs etc even though they are reluctant to go but that in the end, PWD actually enjoys the experience no matter how fleeting that maybe to them. My other take-away from your post is the idea of day-care at potential homes as day care. I'll investigate that now and as I'm about take leave from work - I'll take her round to visit before hand.

I do wonder how many of us who are working and are doing caring duties, actually end up spending most of our work leave time caring for our elderly parents. We're not really official "carers" but yet we are carers. I don't seem to for the last 5 years, have had any down-time really and quite frankly - going back to work, almost feels like down-time. I do sometimes feel that in my 60s I should be able to enjoy some down-time but yet I'm looking after Mum. Sorry to say that - I'm having a bit of a "down" moment.

Thank you both, and again to all posters. It's so greatly appreciated as your insight is based on your experience and I'm just going through what you've gone through but you've been so kind sharing it's really helping me.

All the best to all of you.
 

LouiseW

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Oct 18, 2021
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@LouiseW It isn't likely that you will be able to get your dad to clear the spare room. It is galling to hear yet another story of professionals believing what a PWD tells them without checking. If I were you I would be complaining about what I would describe as incompetence.
You are right I should be, but I have a folder full of replies to complaints I've made in the past. All of them state in no uncertain terms that "the professionals" tested Dad's capacity and were satisfied that he had mental capacity so every word Dad said was true and accurate.
Even though one of my complaints was that he ended up being picked up by the police when failing to get home on his own from a hospital appointment - I begged the hospital to keep him until I turned up to collect him. He left on his own minutes before I arrived. But because "the professionals" deemed him to be fully competant they take zero responsibility for the fact that he got off the bus in the next village to his own and was stood in the rain with no coat on when picked up by the police.
The police raised a safeguarding issue with Social Services, Social Services phoned Dad who told them he was in perfect physical and mental health, Social Services believed him. Same happened when the Ambulance Service raised a safeguarding issue, and when the Alzheimers Society Safeguarding Team raised one.
It's bonkers but this is what happens every time.
I have had to resort to writing to his GP and resigning as a carer, that had some effect and now he has some attention from the surgery and the Community Mental Health team. Social Services still can't be arsed to do an assessment but the Mental Health team are sticking with him.
Rant over xxxxxxx
 

MartinWL

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Jun 12, 2020
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London
@LouiseW that's appalling. It comes up often here that people defer to professional people about capacity but the Mental Capacity Act does not say that doctors or social workers know best. Capacity is decision specific. It isn't valid to say that a person has or has not got capacity generally. A doctor or social worker probably has far less understanding of the patient's mental abilities than someone who knows them well. In any case capacity doesn't equal accurate recollection. Keep complaining.
 

taliahad

Registered User
Nov 22, 2021
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Can I just ask a question about Mirtazipine please. My mother was prescribed this drug several months ago, three months I think and it initially seemed like a wonder drug. Mum slept all night for the first time in a very long time, there was none of the previous prowling around the house that we put up with for so long before. Trouble is now, it seems to be wearing off, she is returning to her previous state of agitation, not quite the hysterics that we had before but she was up wandering round for ages last night. Is Mirtazipine something that she can build up a resistance to?
 

MartinWL

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Jun 12, 2020
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Can I just ask a question about Mirtazipine please. My mother was prescribed this drug several months ago, three months I think and it initially seemed like a wonder drug. Mum slept all night for the first time in a very long time, there was none of the previous prowling around the house that we put up with for so long before. Trouble is now, it seems to be wearing off, she is returning to her previous state of agitation, not quite the hysterics that we had before but she was up wandering round for ages last night. Is Mirtazipine something that she can build up a resistance to?
I don't know about resistance by my father takes it and he is on a low dose ( I pill a day) and I believe the dose can be increased by the GP. Maybe her condition is deteriorating and she needs more? Need to consult the doctor.
 

lollyc

Registered User
Sep 9, 2020
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Can I just ask a question about Mirtazipine please. My mother was prescribed this drug several months ago, three months I think and it initially seemed like a wonder drug. Mum slept all night for the first time in a very long time, there was none of the previous prowling around the house that we put up with for so long before. Trouble is now, it seems to be wearing off, she is returning to her previous state of agitation, not quite the hysterics that we had before but she was up wandering round for ages last night. Is Mirtazipine something that she can build up a resistance to?
Mum started on 15mg, and had increases to 30mg, then 45mg, which is the maximum dose, I think.
I suspect it might be a case of the dementia deteriorating, rather than developing a resistance, but worth speaking to her GP.
Mum also took Quetiapine (with several dose reviews), and occasionally Lorazepam too. Dose were adjusted over a period of about 4 years.
 

Linda from Canada

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May 7, 2022
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When I saw your post I had to reply, even though it's a bit late now. "What do I do" is all I hear from my mother all day long. She is 90, we live together and I care for her 24/7. I first noticed years ago that something was odd, when she asked me in the mornings "should I open the blinds". She seemed careful not to do the wrong thing. Now years later her dementia is pretty bad and besides saying "good morning" and "why am I so tired", and "Linda, Linda, Linda", she only says "what should I do?", "where should I go", "what am I doing", and "help me". She says this during teeth brushing, when I'm feeding her, or when she is on the toilet. She says this when I try to tell her something or when a friend tries to visit her. Her mind just can't take in anything and she really looks lost. She was always doing things when she was healthy. The only thing that stops her, is when I turn on recordings of us singing, or saying poems, or doing sayings such as "a women's work is never done". Then she talks with the recordings and that keeps her occupied. But when it's done, it's back to "what should I do". And at times in the middle of the night when I came to her, she would ask me if I was her mother, or if I had a mother. And also if we went out of the house for an appointment and came back, she would later ask "when am I going home". She thought we were visiting someone and this was not our house. I just wanted to share this with you, since your post sounded so familiar. Best of luck to you.
 

T1000

Registered User
Feb 3, 2022
204
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When I saw your post I had to reply, even though it's a bit late now. "What do I do" is all I hear from my mother all day long. She is 90, we live together and I care for her 24/7. I first noticed years ago that something was odd, when she asked me in the mornings "should I open the blinds". She seemed careful not to do the wrong thing. Now years later her dementia is pretty bad and besides saying "good morning" and "why am I so tired", and "Linda, Linda, Linda", she only says "what should I do?", "where should I go", "what am I doing", and "help me". She says this during teeth brushing, when I'm feeding her, or when she is on the toilet. She says this when I try to tell her something or when a friend tries to visit her. Her mind just can't take in anything and she really looks lost. She was always doing things when she was healthy. The only thing that stops her, is when I turn on recordings of us singing, or saying poems, or doing sayings such as "a women's work is never done". Then she talks with the recordings and that keeps her occupied. But when it's done, it's back to "what should I do". And at times in the middle of the night when I came to her, she would ask me if I was her mother, or if I had a mother. And also if we went out of the house for an appointment and came back, she would later ask "when am I going home". She thought we were visiting someone and this was not our house. I just wanted to share this with you, since your post sounded so familiar. Best of luck to you.
So sorry this must be hard to deal with and so sad. I am early on in the journey with mum so I am thankful for the examples to know what to expect. Are you able to get some support so you have a break? Incredible what you are doing if she is 90 now, best wishes to you.
 

Bee Bumble

Registered User
Jan 29, 2019
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Hello lovely people on this forum!

I've read many of your posts and I'm not in a really dark place yet like some of you are. But like all of you I'm struggling to understand this Alzheimer's stuff and the behaviours that I'm greeted with that cause me frustration and restrained anger whilst recognising that what my Mum's probably going through is worse and trying to tread that balance of recognising the alzheimer's has taken over my Mum but being forced to deal with it such a way that I either want to scream or cry.

I've searched posts but I've not quite found the answer so I wonder if there is anyone who is perhaps early alzheimer's with their loved ones that can relate or whether this is something different from alzheimer's. Maybe there's alzheimer's with OCD?

Every time I see Mum, before I even walk in the door - whilst she seems to know me, straight away she's telling me what she has done. I distract her saying "let's have a cup of coffee and a chat" - but she ignores that and wants to show me "stuff" she's sorted out. It's very OCD to my mind but just totally normal in her world but it is this "sorting" that is causing her the biggest issue and taking up so much time in her day.

Mum's issues in her life are her knickers and her socks. We've made sure they are all the same size but for some reason she spends hours sorting them out and gets angry and frustrated that the socks don't match up and the knickers are not all the same size. Over the years we've realised what size she is so cleared the "clutter" of old sizes leaving her with just the correct sizes. But she spends hours and hours getting very frustrated trying to sort her knickers and socks into right sizes even though they are all the same size.

I work with her and say "let's sort this out - you guide me - and let's work this through". We do that - and then she'll tell it's all sorted. Next time I see her she says "I've got no clothes, I've got nothing to wear". And I visit hers finding that everything is in heap - and I then sort out for her with her help but it cases her so much stress that she gets angry with me and tell me to "leave it" - then comes back on me saying "What do I do now? Tell me what to do"?

Mum calls me throughout the day and in the late evening - saying "What am I supposed to do? What do I do now?".

I work, I'm in my mid-60s, and am 149 miles away from hers but all my work leave is taken up with taking Mum to appointments, and all of my weekends are taken up with supporting her.

I'm guessing she's middle-term on her Alzheimer's journey - so doesn't always know who I am - as she often shouts at me as "Mother tell me what to do ..." and I'm her daughter (who never married and has remained single) - sometimes being called "mother" actually hurts me emotionally that she doesn't even recognise me. She often say's "How's your family" because she says that to my brothers who are nearby - and they have family. She has no idea of the hurt this causes me or why but yet she says it but that's also part of this brain disorder.

So has anyone else experienced this thing where you are constantly being asked "What do I do now?" "Tell me what I need to do"? I get asked this even when Mum knows I'm doing the washing up in the another room. She's then scream louder at me even though I say - "Let me do the washing up and then I'll be with you". She'll respond "I need help now!".

I tell her what to do and she goes into what I call Melt-down - "don't tell me what to do!" and I get very angry Mum who sulks for awhile afterwards.

I tell my brothers - who just go and visit for 45 mins and leave - that it's like dealing with a child of 6, seeking constant attention and knows that by constantly asking "Why?" you'll respond because you're a nice person.

I say Mum isn't quite right and now we need to look for more care - they tell me "she's fine" .. it's just you don't turn-up regularly enough for her to recognise you". I visit her each Sunday.

Anyone else experienced this OCD behaviour with Azheimers?

Thank you for your response and your time.
My OH has just started saying “what do I do next?” In the mornings, he looks so vulnerable and helpless, all really hard to grasp. He also sorts out his socks mixing the clean ones with the used ones, elastic bands and paper tissues all need sorting out! Bed time seems to be sorting out time.
Saw this on the wall of IOW carers, “Remind yourself you are doing your very best.“.