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Advice or help welcome.

Taggert

Registered User
Jan 30, 2021
16
0
Hi
I am new to this forum and fairly new to the awful world of Dementia. Not really sure how to start but here goes.

My Stepdad was diagnosed about 18 months ago and has been reasonably ok. He does have bad days but he seems to have more better days than bad ones. He isn't my problem my mother is.

I have had a bad feeling since the start of lockdown that she too has dementia but she will not listen and says that she is fine. Fast-forward to almost two weeks ago when she was admitted into hospital with which turned out to be a TIA and not a stroke as they first thought. I know that is not great news but in the grand scheme of things it was better. Anyway it took them almost two weeks to release her from hospital because they had trouble putting care in place as they felt she could not come home without it and l totally agreed with them. Whilst she was in hospital l stayed with my Stepdad and looked after him and did at least a months worth of washing and ironing as well as cooking and cleaning - not that was a problem as l was already there. They finally found her a care package and we picked her up from hospital and brought her home. She hardly looked or spoke to my Stepdad and he just looked over his glasses at her when she got home and then went back to watching TV so a very heartwarming welcome home. We got her settled and then she told us she would fine and we could go home so we left.
I called her several times the next day and when l finally got through she was very off with me and accused myself and my husband of throwing out her things which we hadn't and just yelled and said lots of horrible things so l hung up. I was really upset as we have done everything for them over the years and more so over the last year. Then she rang two days latter to have another go but this time she got my husband but that didn't stop her she just laid into him and accused him of throwing out her things which again he told her we didn't and then her final remark was he was just married to her daughter and was nothing to him. and then she hung up. My husband has taken her shopping every week since March even at stupid oclock when they had special shopping hours for the elderly and he had helped with so much more. He is the most laid back person you could meet and will help anyone out but that was uncalled for.

I have messaged from my Mum's sisters and brother as they have tried to call her but get no answer so l sent her a message asking her to call them and a little while ago she phoned me and told me that she was fine and my sister was helping her out and she has such a kind heart. My sister hasn't done anything for her this year and she even works in the supermarket my mother shops in and passes her door on her way to work and again on her way home and hasn't even offered to drop her a pint of milk and now she is the hero (sorry that sounds childish and l know l shouldn't say it but it has hurt me). My sister never helps so l don't know what is going on. I told my sister months ago l think my mum is having trouble remembering things but she just laughed, so maybe she will really see it for herself. I think it is best to just let them get on with it and keep right away if only for my sake.

Sorry for the long post but l just needed to tell someone. Thanks for reading.
 

DreamsAreReal

Registered User
Oct 17, 2015
74
0
You’re only human, of course it hurts when someone you’ve bent over backwards for suddenly turns on you like that. It still hurts even if you know they’re not well.

I think you’re dead right. Let them get on with it and let your sister have a turn at caring. You’ve done your bit (and more!). You deserve some me time.
 

Bunpoots

Volunteer Host
Apr 1, 2016
5,323
0
Nottinghamshire
Welcome to Dementia Talking Point @Taggert

I’m afraid the behaviour from your mum is typical of someone with dementia and many people will recognise what you’ve described. It’s always the people who do everything for the PWD who get the blame and the ones that do nothing that get the praise.

I think you’ve made the right decision to step back for a while and if she phones for a rant then hang up again. Hopefully this phase won’t last long and in the meantime can you stay in touch with her carers to see that your mum and stepdad are ok?

It’s probably a good time to get LPAs in place if you haven’t already. Perhaps your sister could help with this as she’s the golden girl at the moment - if you make them “joint and several” both of you will be able act independently.
 

Taggert

Registered User
Jan 30, 2021
16
0
Welcome to Dementia Talking Point @Taggert

I’m afraid the behaviour from your mum is typical of someone with dementia and many people will recognise what you’ve described. It’s always the people who do everything for the PWD who get the blame and the ones that do nothing that get the praise.

I think you’ve made the right decision to step back for a while and if she phones for a rant then hang up again. Hopefully this phase won’t last long and in the meantime can you stay in touch with her carers to see that your mum and stepdad are ok?

It’s probably a good time to get LPAs in place if you haven’t already. Perhaps your sister could help with this as she’s the golden girl at the moment - if you make them “joint and several” both of you will be able act independently.
Thank you. We already have LPA's in place for them both. My sister is not on either as both parents did not want her to been named on them - their choice not ours as she never did anything to help them - their words not mine. I don't know how to contact the carers and l really don't want another reason for her to hate me at this moment in time so l think it is best just to let them all get on with it. I plan not to answer the phone again and will let her sisters and brother know that she no longer wants or needs our help and that they will now need to go through my sister as she is the star - l just hope it lasts because she is not one to go out of her way to help anyone if she can help it and her OH also isn't one to help anyone and makes his feelings well and truly known.
 

Sarasa

Volunteer Host
Apr 13, 2018
2,791
0
Hi @Taggert and welcome to Dementia Talking point. I think all of us with a loved one with dementia have been accused of various things unjustly. It certainly hurts, as does the deciding that another sibling is the 'golden child', even if they don't do as much as you do. The person with dementia (PWD) usually doesn't remember any episodes when they've been difficult. I know I used to feel wrung out after having dealt with one of my mother's meltdowns, only to have her phone the next day, all bright and breezy, wanting a cosy chat. Try not to take it too much to heart. Very tricky I know.
I think it would be worth getting hold of whoever organised the carers coming in, to find out exactly what is in place and how to contact them. You need to be kept in the loop even if you are not dealing with them directly about how things are.
I wonder if this thread Compassionate Communication with the Memory Impaired might be of use when talking to your mother. It's full of very good tips on how to deflect difficult situations. Don't beat yourself up if you can't manage it. I for one found it very tricky, but when I did use it, it helped keep things calmer.
 

jules38

Registered User
Feb 20, 2010
2
0
The thing to remember is that if she she has dementia then it's the illness talking and not her. My dad was the sweetest man in the world but when the illness gripped him he became violently bad tempered and his language was vile. He would verbally attack him numerous times because he didn't recognise me and numerous times thought I was a burglar or trying to put him in a home. Just go along with her and never lose your temper or contradict her. Sit with her if you can and have a calm conversation as best as you can with you.
 

Taggert

Registered User
Jan 30, 2021
16
0
The thing to remember is that if she she has dementia then it's the illness talking and not her. My dad was the sweetest man in the world but when the illness gripped him he became violently bad tempered and his language was vile. He would verbally attack him numerous times because he didn't recognise me and numerous times thought I was a burglar or trying to put him in a home. Just go along with her and never lose your temper or contradict her. Sit with her if you can and have a calm conversation as best as you can with you.
Thank you for your reply and l am sorry to hear how the illness changed your Dad. My Mum has always been nasty, especially after a stay in hospital - not sure if it related but it just seems this way. Unfortunately this time it is worse and she has upped the nastiness big time so l am not really sure it can all be blamed on the illness as she only seems to be targeting myself and my OH like she has each time this has happened and everyone else seems to be perfect. So far l have tried to be calm and polite and not risen to her rages but it doesn't seem to work because she leaves it a few days and then calls to rage about something new.
For the time being l am going to step back and leave my sister to do something for a change - she is not one to help or go out of her way if she can help it so the help probably won't last too long and will get out of it as quickly as she can.

Again thank you for your reply. It is time to take care of myself for a little while.
 

canary

Registered User
Feb 25, 2014
14,896
0
South coast
Unfortunately this time it is worse and she has upped the nastiness big time so l am not really sure it can all be blamed on the illness as she only seems to be targeting myself and my OH like she has each time this has happened and everyone else seems to be perfect.
Im afraid that this is absolutely typical in dementia. They dont understand what is going on, dont realise that they themselves are actually the problem and therefore think that it is the people who are closest to them who are causing it all - even though thats usually the ones who are doing the most for them.
They are dimly aware that things are being done for them, though, and therefore conclude that, as it cant be the ones who are closest to them (because they are the ones they blame for their problems), it must be other relatives (who arnt actually doing anything at all :rolleyes:).

There is probably the phenomenon known on here as "Hosting" coming in to play as well. This is an incredibly annoying phenomenon where the person with dementia can suppress their symptoms for short periods of time - usually when faced with medical staff, authority figures, or members of the family that they dont see often. It takes a lot of effort, they cant maintain it for long and it leaves them tired and grumpy, but they can usually maintain it for just long enough to convince the person they are seeing that there is nothing wrong. Then you are left to pick up the pieces [sigh]

I hope this makes sense. They are so muddled and all their memories are wrong, but in their minds they are convinced that they are right. She is not doing it on purpose, but that doesnt stop it hurting. I agree with everyone else - probably best to step back for a while.
 

Taggert

Registered User
Jan 30, 2021
16
0
Hi thank you all for your replies. I am finding this really hard at the moment and wonder how you all get through the early days? It seems that we are just phoned now to be accused of something or to have an argument which l refuse to get drawn into. Last night was yet another of those calls. I tried to make a joke of a few things that were said but once things which were untrue we said about my OH l knew it was time to hang up. As l have said before my OH has gone above and beyond for my parents but now they just seem to have it in for him and are trying to turn us against each other at the same time saying they know things about him and l will find out soon what they are but they won't tell me. I know it is all rubbish but it hurts just the same. She just seems to be trying to hurt me/us for some reason which l don't understand as all we have ever done is try to help them.

What can l do to get through this because l don't think l can take much more of it?
 

Bunpoots

Volunteer Host
Apr 1, 2016
5,323
0
Nottinghamshire
Sometimes the only thing you can do is stand back and wait for the storm to pass. I know this goes against the instinct of someone who obviously cares as much as you do but you have to keep your sanity somehow!

You said your mum has care in place so she should be safe for now. It won’t be forever.
 

Taggert

Registered User
Jan 30, 2021
16
0
Hi me again. Another weekend and another horrible phone call. Although this was one was just after l had a phone call from her GP saying she was missing hospital appointments. I sent my DS a message as she is now the only one she will have anything to do with. She said she was going to the hospital but l don't think the GP would call if this was true. These were just as bad as last time accusing us of throwing out their things but now she is telling my SD what to say and he agrees with everything she says. She also said she knows things about my OH which l know is not true and it is just another way to hurt us. I am not sure that she is having carers anymore. In the end l just had to hang up before it got anymore out of hand.

How do you all deal with this and is it normal?
 

canary

Registered User
Feb 25, 2014
14,896
0
South coast
Im afraid that it is incredibly hard. My mum was convinced that I was stealing from her and abusing her. It doesnt help when other people in the family are believing everything that is said.

Does she phone at a particular time eg in the evenings when she might be sundowning? If so you might consider turning your phone off at this time.
I would also send a letter to her GP explaining what is going on and that you are unable to get her to appointments etc. That way the GP will know what is going on.

In mums case it got resolved after mum had a TIA, ended up in hospital and went from there to a care home. Once she settled her paranoia went, her old personality (though not her memory) returned and I felt I got my mum back again.
 

Taggert

Registered User
Jan 30, 2021
16
0
Im afraid that it is incredibly hard. My mum was convinced that I was stealing from her and abusing her. It doesnt help when other people in the family are believing everything that is said.

Does she phone at a particular time eg in the evenings when she might be sundowning? If so you might consider turning your phone off at this time.
I would also send a letter to her GP explaining what is going on and that you are unable to get her to appointments etc. That way the GP will know what is going on.

In mums case it got resolved after mum had a TIA, ended up in hospital and went from there to a care home. Once she settled her paranoia went, her old personality (though not her memory) returned and I felt I got my mum back again.
Thank you. I did tell the GP what was going on and they said they would try to get someone into see her. She had a TIA a few weeks ago and even though l kept telling the nursing staff on the telephone that l thought she now had memory problems they didn't do anything about it except to say that they would set up care for the first few weeks to help her settle back into her home and if there was anything wrong they would pick it up.

She doesn't phone at the same time so for the last few days we have just ignored the calls and so far today she hasn't called. I just worry that if something happens we might miss it but at the same time we have to step back for a while. I know that she is most likely telling lies about us and as my sister hasn't taken much notice but seems to be the favourite again even though she has always said she didn't need her as she neve does anything. Sorry this is the way she has always been so being nasty to me is nothing new but it just seems to be more often than it used to be.
 

canary

Registered User
Feb 25, 2014
14,896
0
South coast
Im sorry @Taggert . Eventually everyone will see the problem though. Mum was telling all her friends and neighbours about me and I saw them giving me odd looks. By the time she moved to her care home, though, she had been writing horrible letters and posting them through her neighbours letter boxes, got into arguments with the next door neighbours over the bins, the woman across the road had called the police because she said that mum was harassing her, she took to walking out in the wee small hours and hammering on neighbours doors at silly o'clock in the mornings and by this stage no-one believed that there was nothing wrong with her.

Yes, I was pulling my hair out and I expect you are too, but it will get resolved eventually.
 

Taggert

Registered User
Jan 30, 2021
16
0
Hi everyone.

Well another week and yet another call. Mum called yesterday when l was at work demanding to know what we had done with her phone chargers. Bearing in mind she has been home from hospital for over two weeks l would have thought she would have charged her phone at some time during this time. She angrily told my OH to phone me as soon as l get home and then hung up.

As soon as l got home he told me about the call and l knew that l would need to call her. I put it off for a while as every time l thought about making it l felt sick - not sure if this is how others have felt but now every time the phone rings l just feel sick even if it isn't her. Eventually l plucked up the courage to call and get it over with. She picked up immediately something she hasn't been doing for a while. Anyway the conversation went:-

M- Hold on l need to turn this down!!
Me - Hi Mum OH said you called because you can't find your phone charges.
M - Repeat that!
Me - OH said you called because you can't find your phone charges.
M - Found them! Cheers! and hung up.

I spoke to her sisters who are also worried about her and they have both said that she hardly picks the phone up to them and when they have asked if she has seen us she says "No they haven't been to visit. Don't know why". They know what has been said as we keep in touch most days and they keep me as informed as they can about how she is as we have all agreed that l should keep my distance for the moment. It sounds like she is basically lying to them about what is going on and she tells one that someone is cancelling her hospital appointments and tells the other that she didn't go because she didn't feel well enough. They also told me that my sister and her partner had been round and sorted her phone out and were the last ones to touch the chargers but again it is us that get the blame.
They suggested l keep a record of everything she accuses us which l will do and maybe we will see a pattern but at the moment she calls at different times of the day and different days of the week .

I just hope that my sister gets a taste of her temper too. I know that sounds bad but l am feed up being the target all the time.

Again thanks all for listening.
 

canary

Registered User
Feb 25, 2014
14,896
0
South coast
Shes probably not lying about what is going on - she probably just cant remember and saying what she thinks is true according to the narrative that she is trying to maintain.
I remember a whole lot of hoo-ha at the time before I realised that OH was having problems because he was telling me that the doctors wanted him to come of some tablets and it was only later I discovered that he was telling the doctors that it was me that wanted him to come off them!!! In reality he wanted to come off them himself, but didnt know why, so the story varied each time he told it
 

Taggert

Registered User
Jan 30, 2021
16
0
Hi me again. Things are pretty much the same except that l had another call from Adult Social Care and after a long conversation with the lady there she seems to think that my Mum does not have dementia and when she visited Mum was able to answer all her questions and it was a little like she already knew what was going to be asked and had the answers ready. She thought it perhaps had more to do with her recent stay in hospital and the TIA than dementia but she wasn't able to help with my Mum's sudden change in behaviour and she too said that perhaps it would be better for me to take a step back and let my sister help which l am doing.

However, yesterday l came home to another message from my Mum demanding that l call her. I just wanted to cry when l heard it because l don't think l have the Am l being selfish? Should l just put on my big girl pants like my OH says and call her back? I just want to run away and leave them to it. Is that so wrong?
 

karaokePete

Registered User
Jul 23, 2017
5,956
0
N Ireland
If you have the contact details for Adult Social Care I would ask them if there is still a care package in place as that would enable you to step back.

Explain the effect that these circumstances are having on you and be assertive in letting them know that you can't take on a caring role at this time. After all, it's Adult Social Services who have the legal duty of care towards a vulnerable adult, not you. I had to take this line in relation to my wife's care and we were provided with 3 days a week Day Care, which helped both of us. If you keep doing things both family and Social Services will just let you carry on - that's the way it is.
 

canary

Registered User
Feb 25, 2014
14,896
0
South coast
Have you come across the term being in "Hostess mode"?

Both mum and OH are/were experts.
When someone has dementia they can, especially in the early stages, suppress the symptoms for short periods of time. It takes a lot of effort and they cant maintain it for long, so it is usually only when authority figures, medical staff and relatives that they dont see often come to visit. They can usually just maintain it long enough to persuade that person that they are much better than they really are - possibly that there is nothing wrong at all. People who are do not have much experience of dementia can be completely taken in.
Its extremely annoying.

You dont have to phone your mum back if you dont want to.
 

Taggert

Registered User
Jan 30, 2021
16
0
Have you come across the term being in "Hostess mode"?

Both mum and OH are/were experts.
When someone has dementia they can, especially in the early stages, suppress the symptoms for short periods of time. It takes a lot of effort and they cant maintain it for long, so it is usually only when authority figures, medical staff and relatives that they dont see often come to visit. They can usually just maintain it long enough to persuade that person that they are much better than they really are - possibly that there is nothing wrong at all. People who are do not have much experience of dementia can be completely taken in.
Its extremely annoying.

You dont have to phone your mum back if you dont want to.
Thank you for your reply. I did ask the lady at Adult Social Care if this could be the case and she was adamant that my Mum wasn't showing signs of Dementia and she had seen lots of people who had/have dementia and she knew too many answers to her questions. She did say she would monitor the situation and if anything changed she would let me know.

I am not going to rush and make the call.