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

[doingmybest1]

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.

 

[Arthurgeorge]

Dear doingmybest1, you are doing your best and it does sound like dementia. I suspect your Mum gets a feeling that things are not right in general, gets anxious and then focuses on the clothes and is trying to regain some control, but then forgets what has been done and starts with the same problem again.
The demand for immediate attention happened with my relative as they became very focussed on their needs and a logical explanation eg I am doing the washing up would make no sense to them, as their needs were obviously more important to them than washing up. ( I don’t mean in a selfish way, just that they couldn’t comprehend that I had another task to do, and why was I leaving them alone when they needed me.)
I found the behaviour got worse if they knew I was about to leave, so often I would leave quite abruptly, with, “I have to get off before the traffic gets busy.”
The “compassionate communication” advice is great. Just search compassionate
in the search box above, or hopefully someone else will come along and put the link in.
As for your Mum needing help, and differing family views, so many people on here talk about these problems., with PWD putting on hostess mode for certain people.
Is your Mum fed, clean and safe? That’s great, unless it is only because you are keeping it that way and you are overwhelmed. In that case you need to have an honest family talk and maybe you need some weekends off.
Have you got the POAs etc in order?
Finally, when she calls you mother, go with it, and take it as a compliment, that she knows you are an important person to her, even if she can’t work out you’re her daughter.
Take care. I’m sure other posters will be along soon.

 

[Grannie G]

Hello @doingmybest1

It sounds to me as if your mum is lonely. Have you calculated how many hours she is alone? Might she be at risk?

Do you think she would be happier in residential care where there would be someone on hand at all times to answer her questions?

Sometimes tough decisions have to be made much earlier for people with dementia who live alone than for people with dementia who live with partners or family.

Here is a link to Compassionate Communication as recommended by @Arthurgeorge

Compassionate Communication with the Memory Impaired

The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...

forum.alzheimers.org.uk

 

[JanBWiltshire]

My mother definitely exhibited these characteristics and seemed to spend hours sorting through things and she had a fixation about keeping busy. I think it was because she knew she wasn’t quite as she was and it was the one thing she could control.

Regarding other people’s take on things, you often find they are unaware or don’t know your “normal” mum quite as well as you do so haven’t picked up in the signs. Also, showtiming happens quite a bit too and I know how very upsetting that can be as it makes you feel it is your imagination! It isn’t.

Now in a care home, my mother is much calmer and I realise, looking back, she was struggling with the day to day but couldn’t voice it. Her dementia meant she just couldn’t do what she used to and the house was her world. Sadly, it is all part of dementia but very hard to witness and deal with. I feel for you and please take comfort from the fact your mother is really lucky to have you as you are the one who picks up on the changes - in my experience that is worth everything even though it is a hard journey to take.

 

[lollyc]

I think this is a dementia thing. Mum constantly "tidied", which meant that stuff got put in very odd places, and we then had to spend hours looking for them.
I was mother, I was my uncle, I had various husbands and children (I'm single and female) - and I too found it very upsetting, but no amount of reasoning makes any difference, and you just have to go with it, and have a good cry later.
My Mum always put others first, but once dementia hit that went out of the window. If she wanted something, however trivial, she wanted it now. As @Arthurgeorge says, it's not selfishness (tho' it certainly feels like it!), they simply cannot see beyond their own needs and wants.

 

[canary]

I agree with the others - its all about trying to maintain control, born of anxiety and fear.
She knows that things arnt quite right and feels that she should be doing something, but she doesnt know what and cant remember what she has already done. So she is constantly asking "what should I be doing?" and trying to maintain control by constantly sorting. I used to give mum a drawer, or her button box, to "sort out", which would occupy her for a while, but unfortunately, not for long as she would forget what she was doing and get distracted.

 

[MartinWL]

I have not had the same problem but it does illustrate the great diversity of dementia behaviours. I think excessive anxiety about things that don't really matter is common.

 

[Newbie4]

Sounds like you are doing a fab job. The loss of recognition about who you are is one of the biggest things to overcome - that's what I felt. Mum no longer recognises who anyone close to her is, I'm usually "that person who comes round sometimes to feed the dog" (they haven't had a dog for years).

Regarding the OCD - can also completely relate to that. Mum will spend hours very carefully folding toilet tissue and hiding it. Her handbag is always full of bundled up toilet roll, and a I recently found 2 whole drawers upstairs crammed full of tightly rolled bundles of the stuff!

Advice we were given - as long as she is occupied and safe, let her carry on - just make sure you have enough toilet paper in the house...

 

[canary]

Yeah, I had the toilet paper too.............

 

[LouiseW]

Hi
My Dad has been sorting the same bookshelf now for 4 months, all the books come off then they get sorted into various piles and then the piles move aroud the lounge then the piles get put back on the bookshelf but the job is not considered finished because Dad cannot settle on how to clasify them because and I quote " there may be things in the books realting to things in other books"

On one level I'm really happy for him that he has this activity to occupy him and it is something he is really happy to allow his daily carers to help him with.

On another level it is soul destroying for me - the carers should be cleaning the house and giving him personal care but he will only let them sort books with him most of the time.

Also he really really should be getting on with clearing the hoarded clutterr from rooms that everyone else seems to beleive a full time carer will be moving into in the near future because he is at the stage where he should not be living alone.

This "clearing for a carer to move in" story gets told to Social Services / GP / Community Mental Health team and they believe it.

So every time I raise concerns I get told that Dad is preparing for full time care therefore there is no need to assess him - they know this to be true because this is what he has told them, no one ever checks whether anything has actually been done in the rooms that need clearing.

Maddeningly the professionals cite that Dad being aware enough to make preparations for a carer to move in is evidence that he has Capacity !!!!!!! This is bonkers but happens all the time.

When I point out that when Dad says he is preparing for a carer - he thinks that moving books on and off a bookcase in the lounge is preparing for a carer no one listens to me.

Interestingly he is not a reader and has little attachment to the books compared to the items in the rooms he should be delaing with (or allowing family to deal with)

The only way to cope is to accept that there is nothing you can do about it. Easier said than done but worth going through the pain to get to a place where you can live with it without ripping yourself apart every day.

Good luck xxxxx

 

[MartinWL]

I sometimes wish my dad had the tidiness obsession. He is the opposite, things are left any old where, and he sits in a chair in surrounded by things he has put haphazardly aside. He won't throw things away. One of my weekly tasks is to check all the newspapers and magazines and sort into "keep" and"recycling". Much as would like to order a skip, I don't worry much about this so long as no harm is caused.

 

[MartinWL]

@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.

 

[Muttimuggle]

Yes, I relate to the OCD too with my mother with mixed dementia. She has always been fastidious about the home but there are many little rituals which I am becoming slowly aware of and which she is reluctant to change. One crazy example is that she has a bidet which she still uses for it's real purpose in the mornings - so she has this bedtime routine where she puts water in it to wash her face and then puts in the one pair of knickers she always wears to wash them, then the supports stockings....and then her rear end if that needs a wash, gets done! The washed items go on the radiator for the morning. She only washes and wears this one pair of knickers despite the fact that she has a drawer full and she washes in the bidet even though she has a perfectly good sink to use....and a washing machine which she uses for bedding. I have spoken to her about it but she she doesn't really give me a logical reason why. I feel it is a sort of way to prove to herself that she is clean still and in control.

Then she has a carer who comes to do cleaning once a week. I try to go through and write a written list about what might be useful for the carer to do in that time but she quite often asks them to hoover through...even though there is no mess to hoover and many other jobs need doing more - but she is obsessed with floors.

It sounds hard for you and that you need some extra help in the form of carers.

 

[Sirena]

Repetitive behaviour of that type of quite a common feature of dementia. As others have said, this is a misguided attempt to maintain some control over their surroundings, and you can't apply logic to it.

My mother had a phase of being obsessed with underwear - she sorted through it and took most of it to the recycling bank, then had to buy more.

You just have to follow the line of least resistance. If PWD (person with dementia) is happy sorting books/undies, go along with it. Challenging it won't change their behaviour.

But I agree with Sylvia, PWDs get to a stage where being on their own makes them lonely and anxious (although they wouldn't verbalise that) and they can benefit from the constant companionship and reassurance of a care home environment.

 

[Jaded'n'faded]

My mother spent an awful lot of her time at the care home emptying her drawers and wardrobe because 'everything needed sorting out'. Sometimes she would pack up her stuff then go to sit in reception, hoping to escape. Other times she would try to work out which of the clothes were hers and which belonged to 'that other woman'. Often knickers would be missing, usually her favourite blue flowery ones, and she was convinced these items had been stolen because 'they don't have nice ones like I do and they are jealous'.

But it didn't start then. Years before I noticed various obsessions and/or ritualistic behaviour. For a while she'd go out every week and buy a new anorak. When we came to clear her house, there were 8 identical ones, all brand new. The other things she bought frequently were torches, batteries, large blocks of chocolate, cartons of milk and... shower heads. Never found out what that was about but there were 6 in a cupboard, none of which would have fitted her shower, which was found to have much dust and cobwebs in the tray anyway!

I think when some of the brain pathways no longer work and memory is virtually non-existent, they just don't get the usual cues to tell them what they 'should' be doing, but they are left with a feeling they ought to be doing something, which leads to anxiety. I think it's the same with repeating things or being desperate to tell you what they've been doing. In the years before the care home, every time I visited mum she would have her bank statements, HMRC statements and her will ready to show me, telling me proudly she still had plenty of money or panicking that she didn't know where 'all the money' was. That's another obsession that comes up frequently...

 

[canary]

I think that one of the problems with dementia is that they have so much difficulty with decision making. This means that if they come up with a solution (however bad it is) their brain is sort of "stuck" and they cant think of any other solutions. Oh has to have meusli for breakfast and a cheese sandwich for lunch - he can no longer envisage any other alternative. Recently I suggested we went to cafe for lunch. I mentioned that they did lovely ploughmans (he loved ploughmans, it was a real treat) with rice salad, coleslaw and pickled onions. He looked at me blankly and asked how they kept it all in. I did a double take and asked him what he thought a ploughmans was? He said - "a cheese sandwich"

So cleaning means hoovering, sorting out means rearranging the books or clothes, lunch means a cheese sandwich. They just cant comprehend anything else.

 

[doingmybest1]

Hello to you all for so kindly taking the time to reply to my post. I cannot thank you enough for helping me by reaching out and sharing your experiences. I had a lump in my throat just reading your replies. This was because you've also gone through what I am going through and it is a roller-coaster of emotions so my heart goes out to you to for what have and are going through.

Thank you so much for your empathy of Mum's situation, and for your advice on taking things forward. Yes, the LPAs were put in place 7 years ago when I first noticed some strange behaviours but Mum was in a very different place at that time mentally,. Carers are now going in each morning and each evening at the moment to befriend her as she said she didn't want "strangers" in her home. And, as all of you have mentioned, sometimes even though the PWD says "No" there's a lot of interpretation required to understand what will help them and be for the best for them. The loneliness factor mixed in with anxiety with Alzheimer's is very real and thank you for pointing this out. Mum's carers going in every day have turned-out to be a linchpin of support for her and they help with the loneliness to some extent but also the sundowners she starts to go through every day at almost exactly the same time which tends to be 14:30, which I can delay for an hour by taking her for a gentle stroll to focus on other things, but not for much longer.

The behaviours you have shared of your loved ones have so resonated with what I'm experiencing and it's good to have your advice to "go with the flow" because that's instinctively what my brother and I have been doing but concerned that all the time, she's so anxiety ridden that we feel we're being cruel leaving her knowing this will be her mental state potentially after we go home and leave her overnight.

Thank you to all who shared about tissues/toilet tissues and the constant "sorting out". Interestingly, the carer who assessed Mum asked "Does she have a tissue fixation?" Seems this is common with Alzheimer's. I explained it's more a toilet roll thing. Mum has lots of ends of toilet rolls with plenty of sheets left but she leaves them in groups (of 8-12) in various places. When Mum pointed to a group of them recently saying they were "clutter", I removed them all but she said she needed some of them to be still in place so I left a couple. Next day I came in and she pointed to the group saying "something is not right!". A few days later when I returned - all of the new toilet rolls had been whittled down to the same size as those in the "group". I couldn't find the discarded sheets in the bin so I'm guessing she may have spent hours flushing them down the loo so that she was left with the same sheets on the loo roll to put into the "group". I've now learnt they are important to her and to leave well alone and when she says they are "clutter" to just remove 1 to make her reassured.

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.
Thank you to all of you for pointing me to the "loneliness" Mum is experiencing. My brothers and I twigged that the behaviours were related to anxiety and to an extent loneliness but until I received your posts I couldn't crystalize what was happening to her. Thank you so much for sharing your advice regarding loneliness which have helped to explain things. It may be my bad, but I had thought the anxiety triggered the loneliness but now with your help I've realised that the loneliness is what triggers the anxiety at certain points during the day. And yes, she has long periods of time on her own because she always said she wanted to be in her own home and not go to a care home and we had thought we were doing the best by her by enabling her to be at home although until this post and your shared replies, we were wondering - "are we doing the right thing supporting her to be at home?".

I've already drawn-up a list of potential care homes and will be using my holidays to take Mum round for a visit (after I've been there myself) just so that she gets an idea of what a care home offer her. When we introduced carers but I kept on turning up, she said tearfully "I thought I would never see you!". In her mind I think she thought - carers come in - I'll see no-one in my family. Doesn't stop the late nightly calls saying "I don't know what I'm doing - tell me what to do" but she's much less stressed than she was without the carers coming in.

Again, I want to thank you all for your prompt and quick support and the warm wrap-around hug you have given Mum, me and my family through sharing your experiences and I appreciate that it must have been hard to do.

Thank you!

All the best to you and yours!

 

[Sue741215]

Yes, I relate to the OCD too with my mother with mixed dementia. She has always been fastidious about the home but there are many little rituals which I am becoming slowly aware of and which she is reluctant to change. One crazy example is that she has a bidet which she still uses for it's real purpose in the mornings - so she has this bedtime routine where she puts water in it to wash her face and then puts in the one pair of knickers she always wears to wash them, then the supports stockings....and then her rear end if that needs a wash, gets done! The washed items go on the radiator for the morning. She only washes and wears this one pair of knickers despite the fact that she has a drawer full and she washes in the bidet even though she has a perfectly good sink to use....and a washing machine which she uses for bedding. I have spoken to her about it but she she doesn't really give me a logical reason why. I feel it is a sort of way to prove to herself that she is clean still and in control.

Then she has a carer who comes to do cleaning once a week. I try to go through and write a written list about what might be useful for the carer to do in that time but she quite often asks them to hoover through...even though there is no mess to hoover and many other jobs need doing more - but she is obsessed with floors.

It sounds hard for you and that you need some extra help in the form of carers.

I hope you don't mind me saying that I had to laugh out loud at your account of your mum's activities and hope that you also derive some amusement at the absurdities of dementia - frustrating though they are when you are having to deal with them. Bless her - she sounds very organised in her own sweet way.

 

[MartinWL]

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.

The Mental Capacity Act 2005 doesn't say that exactly, it is a bit less simple. Firstly each decision has to be considered separately. The PWD has to have the chance to make the decision if they can but to be able to make a decision themselves quite a high bar has to be surmounted. The main things are being able to understand relevant information explained to them and being able to weigh up the pros and cons of different options. If the PWD cannot do so, and many cannot, then the attorney will have to decide instead. So there isn't an absolute right of refusal when it comes to making decisions if the person lacks capacity for that specific decision and the attorney can overrule what the PWD wants, acting as always in his/her best interests.

 

[lollyc]

Hello to you all for so kindly taking the time to reply to my post. I cannot thank you enough for helping me by reaching out and sharing your experiences. I had a lump in my throat just reading your replies. This was because you've also gone through what I am going through and it is a roller-coaster of emotions so my heart goes out to you to for what have and are going through.

Thank you so much for your empathy of Mum's situation, and for your advice on taking things forward. Yes, the LPAs were put in place 7 years ago when I first noticed some strange behaviours but Mum was in a very different place at that time mentally,. Carers are now going in each morning and each evening at the moment to befriend her as she said she didn't want "strangers" in her home. And, as all of you have mentioned, sometimes even though the PWD says "No" there's a lot of interpretation required to understand what will help them and be for the best for them. The loneliness factor mixed in with anxiety with Alzheimer's is very real and thank you for pointing this out. Mum's carers going in every day have turned-out to be a linchpin of support for her and they help with the loneliness to some extent but also the sundowners she starts to go through every day at almost exactly the same time which tends to be 14:30, which I can delay for an hour by taking her for a gentle stroll to focus on other things, but not for much longer.

The behaviours you have shared of your loved ones have so resonated with what I'm experiencing and it's good to have your advice to "go with the flow" because that's instinctively what my brother and I have been doing but concerned that all the time, she's so anxiety ridden that we feel we're being cruel leaving her knowing this will be her mental state potentially after we go home and leave her overnight.

Thank you to all who shared about tissues/toilet tissues and the constant "sorting out". Interestingly, the carer who assessed Mum asked "Does she have a tissue fixation?" Seems this is common with Alzheimer's. I explained it's more a toilet roll thing. Mum has lots of ends of toilet rolls with plenty of sheets left but she leaves them in groups (of 8-12) in various places. When Mum pointed to a group of them recently saying they were "clutter", I removed them all but she said she needed some of them to be still in place so I left a couple. Next day I came in and she pointed to the group saying "something is not right!". A few days later when I returned - all of the new toilet rolls had been whittled down to the same size as those in the "group". I couldn't find the discarded sheets in the bin so I'm guessing she may have spent hours flushing them down the loo so that she was left with the same sheets on the loo roll to put into the "group". I've now learnt they are important to her and to leave well alone and when she says they are "clutter" to just remove 1 to make her reassured.

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.
Thank you to all of you for pointing me to the "loneliness" Mum is experiencing. My brothers and I twigged that the behaviours were related to anxiety and to an extent loneliness but until I received your posts I couldn't crystalize what was happening to her. Thank you so much for sharing your advice regarding loneliness which have helped to explain things. It may be my bad, but I had thought the anxiety triggered the loneliness but now with your help I've realised that the loneliness is what triggers the anxiety at certain points during the day. And yes, she has long periods of time on her own because she always said she wanted to be in her own home and not go to a care home and we had thought we were doing the best by her by enabling her to be at home although until this post and your shared replies, we were wondering - "are we doing the right thing supporting her to be at home?".

I've already drawn-up a list of potential care homes and will be using my holidays to take Mum round for a visit (after I've been there myself) just so that she gets an idea of what a care home offer her. When we introduced carers but I kept on turning up, she said tearfully "I thought I would never see you!". In her mind I think she thought - carers come in - I'll see no-one in my family. Doesn't stop the late nightly calls saying "I don't know what I'm doing - tell me what to do" but she's much less stressed than she was without the carers coming in.

Again, I want to thank you all for your prompt and quick support and the warm wrap-around hug you have given Mum, me and my family through sharing your experiences and I appreciate that it must have been hard to do.

Thank you!

All the best to you and yours!

Mum suffered massively from anxiety (she wasn't lonely, I was there all the time), and was eventually prescribed Mirtazipine by her GP. It's an anti-depressant, not a dementia medication, and it helped a lot. It might be worth asking her doctor if that would be something she could try.

Pre-covid Mum went to several clubs - some dementia, some not - which she really enjoyed (reluctant to go initially, but I insisted she tried before dismissing them). I know not all these things are running at the moment, but there are certainly some over 65 lunch clubs in our area, so maybe some near her? Some care homes also offer day care (possibly not at the moment?), which might be a gradual introduction into the idea of a care home? It may be necessary to employ a carer/friend to accompany her to these things.