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Dementia and Alzheimer's

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Original poster

I am about to fall and crack apart, I need help.

33 replies

tootiredtocry · 11/11/2017 22:19

Hi I am trying to look after my mum (not DM) with vascular dementia, while trying to hold down a house, job and raise dd. I cannot do this anymore without help but cant seem to get any help for me or her. I dont live with her and dont even like her but the sole reponsibiltiy is yet again on me. My OH really doesnt help or understand and have no family helping out. I am sat here tonight again in pieces as I just cant do this anymore.
I am already on antidepressents due to my childhood, but now everyone thinks I should put what little life I have on hold to look after a woman who has spent her life using people to get a life of riley. I just dont know what to do. I know nobody will have any advice, I just needed to get it all out.

OP posts:

rogueantimatter · 11/11/2017 22:23

So sorry if this us simplistic, but could you tell social services that you are not fit to look after her much? Mental health problems.

Original poster

tootiredtocry · 11/11/2017 22:28

Thats how I spent all day yesterday, on the phone to different agencies. SS say refer her to the mental health team, the mental health team say she still has capasity so they wont do anything so speak to the doctor or social services. Part of the problem is she is so malipulative she plays everyone, so she will cry to me and the doctor that she needs help, then when she gets help she tells them she doesnt need them so they go. I just need it to end, either her or me. I cannot go on like this anymore.

OP posts:

ohdostopfiddling · 11/11/2017 22:32

I've heard that Age Uk and the Alzheimer's society have helplines and possibly resources or respite. Caring for Carers is another charity which offers a range of help for you. I'm so sorry you are going through all this

QuiteLikely5 · 11/11/2017 22:33

You do not have to do this.

Put it in writing to the gp that you have been her carer but as from Monday you will not be doing anything to ensure she is not a risk to herself or others.

Do not engage with her if she is harmful to your own health.

Statutory agencies will only step in when they have to. They are a safety net at the moment you are stopping that net being put in place. Best to write that letter

BearFoxBear · 11/11/2017 22:35

Call or visit an Alzheimer Society cafe/centre in your area. They are experts and can give you very clear advice and support you.

Time40 · 11/11/2017 22:44

Legally, no adult can be forced to care for another adult. You have no legal responsibility. Do what Quite says, and tell Social Services (I'd tell them, rather than the GP) that you are unable to provide care any longer. Just ring them and tell them, first thing on Monday. If they try to argue you out of it, just repeat that you are unable to provide care, and refuse to engage with any further discussion. If they still continue to argue, say again that you are unable to provide care, and that you are going to end the call - and then do. Social Services will try anything and everything to guilt-trip you into going on with this, and the only way of making them do their duty is absolute, point-blank refusal to continue.

rogueantimatter · 11/11/2017 22:44

We are all equally deserving of happiness. Your needs are just as important as your mother's. I agree you don't have to do this. You can only do so much. If she suffers because she won't have ahyone help except you then those are the natural consequences lf her bad behaviour.

I agree with pps who advise telling your gp that you are unable to be her carer.

I hope things improve for you very soon. This must be so very difficult for you. My very best wishes to you

Original poster

tootiredtocry · 11/11/2017 22:46

Thank you so much for replying, I dont live with her and she wont go into a home, she has other health problems going on along with the dementia so is often ambulanced to hospital. I am on the other side of the country but have to drop everything to get overther and fuck up my mental health even more as there is no one else. I have family near her but they havent been involved with me or her for years so its just down to me. I have just broken today and just cant do this anymore. I just want it all to end. I know that sounds awful but life really shouldnt be this difficult. Just found that there is a Alzheimer Society cafe near me so will contact them this week, I will also speak to my gp and see what they can do.

OP posts:

Time40 · 11/11/2017 22:50

... and the other thing is that this business of wanting the adult child to help, and refusing help from "outsiders" is very very common in people with dementia. Unfortunately, if they turn away help, the only thing to do is to allow a crisis to develop, at which point Social Services will step in.

Time40 · 11/11/2017 22:53

I just want it all to end

Yes, I hear you. Me too. Good luck, OP - be strong, take action, and refuse to let it ruin your life any longer.

BearFoxBear · 11/11/2017 22:58

It's OK to need some help here. The reason that the Alzheimer Society exists is because it's often unbearable and you're not alone in needing help.

Original poster

tootiredtocry · 12/11/2017 15:03

Thank you so much for your replies, it does mean a lot.

I think this might be the crisis point, I have spoken to the Hosptial today and they dont want to discharge her without a full care package, but social services are reluctuant to get involved as they have been through this with her before, there is another medical issue she has which is their biggest concern at the moment and that could be the think which puts her into sheltered accommodation.

Luckily the hospital have rung me as they dont have full records there of what medication shes on and the dementia, aggression etc, I have been through this time and time again and I am just exhausted. I will speak to hers and my GP tomorrow. All I need is for them to take away the medical capasity and I can make all our lives easier and safer.

I havent gone across to see her today as spent the day with DD and her dance competition, she isnt very happy about it but today I just dont care.

OP posts:

user1497997754 · 02/12/2017 06:23

Put you and your family first..she sounds like. Nasty old woman...let social services deal with her....don't let her upset you any more....enjoy your life and just forget about her

imthelastsplash · 02/12/2017 06:56

I could have written this post 6 years ago (in fact I think I probably did post something similar). I ended up being bullied by family into caring for my mother (no D here either).

I echo what was said about going to see your GP. My gp didn't speak on my behalf or write me a letter. He did however actually understand that looking after an elderly lady who didn't like you before she forgot who you were, and a toddler and hold down a part time job was undoable. He also told me what to say to the social worker when I spoke to her again. I phoned the social worker the next day - 2 days later she was in respite for a week and then moved permanently into residential care.

I hope this gets easier for you. Just remember as a carer that YOU are the most important person!

LoniceraJaponica · 02/12/2017 07:24

MIL has dementia and has carers in 3 times a day. SIL organised this through Age UK.

rockcakesrock · 02/12/2017 08:18

For your own sanity you have to take a huge step back. I know it is not easy to do and I am not a good example. My mother died 2 years ago at 95. I was at her beck and call and was her whipping boy for almost 70 years. After I lost my wonderful dad, when I was young, she remarried, so I had two of them bullying me.

I did everything for them without a word of thanks. When they died within 6 months of each other, I felt that I had been let out of prison. I live close by them and was retired before the real daily needs kicked in. A life saver for me was the Elderly parents board on here. I recommend you look at that. There are so many lovely people on their, going through the same. They have so much practical advice and hand holding. My admiration for those caring for relatives when they have jobs, children and long distances, made my own situation seem not so bad.

Am I glad I stuck by them, No I am not. I wish I had had the courage not to pick up the phone, not to rush over to them and not feel guilty.
I don’t know how to advise you, unless to say, Your DD and yourself are more deserving of your care than your Mother.

Rosa · 02/12/2017 08:29

Part of the Dementia is the fact that they reject anything not familiar , carers , etc but the mental health team know this it is getting the hospital SW to refer to them. AGe Uk can be really helpful, I am abroad and they emailed me when I had some concerns, they were better than getting answers ( or even a response) via the NHS system but they have hints as where to go and who to 'push'. You have reached the point where enough is enough and you need to hold strong and say NO you cannot deal with this and her anymore. This I feel is the worst bit as you are stuck in the midde I think when they get worse it gets easier ( horrible way to say it) to handle as the symtoms are more obvious.

Original poster

tootiredtocry · 08/12/2017 22:06

Thank you so much for all the advice, and Rock for your message So sorry I havet replied but a lot has happened since I posted.

She has had 2 recent tests for capasity 1 in the hospital and 1 from her GP when she was released and both have said she is 100% able to make her own bad decisions.

We have had an emergency care package from the hospital, SS went in last week and have made it permanent, its due to her not taking medication and being unstable on her feet than the dementia. SS told me a while ago that she is manipulating me and trying it on, when the doctor said the same thing a week ago I just snapped and have made the decision to step back.

She was due to come here shortly and stay all over Christmas, but I have cancelled that so she will only be here for 5 days, I wish there was a way I could not have her here, If she was in care I would not have her.

When I ring (which is now once a week rather than every day) I just wont take any of the crap, 2 days after I saw her she was saying in a little baby voice that she needed to see me as she hadnt seen me for months. I just said yes you have you know I was there at the weekend so stop with the games.

So it's not ideal, but I think she knows I wont play her games now, my priority is my DD.

I am going to have a look at the threads mentioned, thank you again for all the help and advice.

OP posts:

drspouse · 08/12/2017 22:29

You need a crisis. My MIL had this - she was generally lovely but didn't understand what the carers were doing, but also started to get confused about who DH was which we distressing.
But everything kicked in when she had a fall. SS got everything sorted out for her then.
She was however much more amenable than your mum sounds. But I am sure they wouldn't have taken no for an answer. SS also kept ringing DH and asking him to come to planning meetings (he was working and we're over an hour away, and every time he asked if they knew this - oh we thought you were local - came back every time).

ChristmasLightLover · 18/12/2017 22:13

DrSpouse has nailed it. A crisis - which will be awful for you and her - will mean that she gets re assessed and will hopefully see her moved to a care home.

How are you feeling about Christmas coming up? Am thinking of you.

notaflyingmonkey · 21/12/2017 08:33

Hi @TooTiredToCry how are you doing? I am in a very similar situation to you, and have had to force myself to step back, for the good of my own mental health. Whatever I do isn't enough for her, so I have cut right back to the minimum. We had a 'crisis' recently where her carer called me and I had to drop everything at work to get there for an emergency Dr call out. There was nothing the matter with her out of the usual stuff, she just wanted the attention.

Original poster

tootiredtocry · 30/12/2017 09:27

Hi, back again with yet another bloody crisis.

We had words on the phone so she was found after "falling" so taken to hospital again This time for 2 weeks and the barriers came down so the professionals saw the real her and they have said she has now lost capasity. They worked with her and got her in a position where she could be discharged on 22nd dec to me for Christmas then back home on 27th with a full 4 times a day care package with sensors in the house etc. Sounds great? Except the second she arrived here she said she couldnt stand, walk and was incontinent, so we had to carry her everywhere even upstairs for 5 days. She wouldnt believe it was Christmas, kept calling out for her mum or the nurse - not with it at all. So I rang ICS as there was no way she could stay with us or go home with a care package so she is now in an emergency care home for 2 weeks.

The first thing she did when we got her there? Walked to the bloody toilet. I am so so angry that I have the christmas from hell to this evil manipulative woman. I told all this to the mental health team and her new social worker and they are doing a full assessment over the next week to see if they can keep her in a home.

So by being so awful and exagerating, it looks like it has completly backfired on her and it means she is now going to be in a home.

Fingers crossed for the results of the assesment next week.

OP posts:

Original poster

tootiredtocry · 30/12/2017 09:27

Sorry that was long!

OP posts:

Jessicabrassica · 30/12/2017 10:04

I'm sorry your Christmas was ruined but we'll done for getting her to full-time care. I've been where you are and residential care was the best thing for my dad. At least your life should be a little easier now although I found the fall out from the stress caused by it all took much longer to go than I ever imagined so be easy on yourself for the next few months. You have done so much for her and tried so hard, it's time for you and your dd now x

Balearica · 30/12/2017 10:14

You are doing the right thing OP. Stand firm. I have also been through this with my DM who had dementia. Your DM needs to be in a home and you need to look after yourself. Expect SS to try and guilt you at some point but just keep saying you are not able to help.

My DM was actually far happier in a home than she was living in her house despite all her resistance to getting there.

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