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Mum with early stage Alzheimers

JAMMYC

New member
Jun 21, 2019
9
Hello,

I'm here because my Mum, approx 6 months ago was diagnosed with early stage Alzheimers. We noticed she wasn't herself when my Dad was admitted to hospital and has been there for the past 8 months. She was forgetful, lacked empathy and just kept repeating things that had happened. Anyhow, since the diagnosis things appear to have gotten worse, whether this is the stress of Dad being in hospital or just how Alzheimers progresses we don't know.

I really want some advice because I would say at the moment she is somewhat delusional. My Brother was always the favourite (in my eyes) but lately she is accusing him of all sorts. Taking things, pinching her post, money, going into their house when shes out. He isn't. 100% isn't. I've even set up a security camera near the front door so I can show her no-one has been in. She doesn't believe it! She is currently taking Memantine and it worked at first then she decided to stop and things went completely AWOL. She was threatening to go to the police about my brother so I asked her to go to see her Doctor which, thankfully she did and she is now back on the tablets.

I think as a family we really aren't coping very well especially with the issue of mistrust with my Brother. I'm trying to be the one in the middle and I'm just getting sworn at and the phone put down. I simply can't get my head around the no rationalisation part. We end up arguing and she shouts and gets angry.

We see someone at the Memory Clinic beginning of July but the last time we seen them they said they would see her again and all being well on the tablets they will discharge her. I feel like there is no support.

Please can someone give me some advice on what to do and will this stage pass? Thank you x
 

Rosettastone57

Registered User
Oct 27, 2016
1,395
Hello,

I'm here because my Mum, approx 6 months ago was diagnosed with early stage Alzheimers. We noticed she wasn't herself when my Dad was admitted to hospital and has been there for the past 8 months. She was forgetful, lacked empathy and just kept repeating things that had happened. Anyhow, since the diagnosis things appear to have gotten worse, whether this is the stress of Dad being in hospital or just how Alzheimers progresses we don't know.

I really want some advice because I would say at the moment she is somewhat delusional. My Brother was always the favourite (in my eyes) but lately she is accusing him of all sorts. Taking things, pinching her post, money, going into their house when shes out. He isn't. 100% isn't. I've even set up a security camera near the front door so I can show her no-one has been in. She doesn't believe it! She is currently taking Memantine and it worked at first then she decided to stop and things went completely AWOL. She was threatening to go to the police about my brother so I asked her to go to see her Doctor which, thankfully she did and she is now back on the tablets.

I think as a family we really aren't coping very well especially with the issue of mistrust with my Brother. I'm trying to be the one in the middle and I'm just getting sworn at and the phone put down. I simply can't get my head around the no rationalisation part. We end up arguing and she shouts and gets angry.

We see someone at the Memory Clinic beginning of July but the last time we seen them they said they would see her again and all being well on the tablets they will discharge her. I feel like there is no support.

Please can someone give me some advice on what to do and will this stage pass? Thank you x
Welcome. Delusions of this kind are very common and are probably diagnostic of dementia in itself . You'll find lots of threads on this topic. Not easy to deal with, however. Sadly, for my mother-in-law, it was never a stage, it was always there. I'm sure others will be along soon with better advice
 

JAMMYC

New member
Jun 21, 2019
9
Welcome. Delusions of this kind are very common and are probably diagnostic of dementia in itself . You'll find lots of threads on this topic. Not easy to deal with, however. Sadly, for my mother-in-law, it was never a stage, it was always there. I'm sure others will be along soon with better advice
Thank you very much for responding to my post. Any information is helpful thank you x
 

Rach1985

Registered User
Jun 9, 2019
412
We found with my dad who is also on memantine and in early stages/mild is that one of the biggest issues was hydration
Back in March he became delusional and absolutely convinced it was 2004 and he had to go to work and run his business but that he didn’t want to anymore and it was time for him to pack it up. This came out of nowhere and was very hard to deal with. We didn’t know what to do and 111 told us to keep giving him water. In the end with plenty of water he came back to normal, or his normal now, and has absolutely no recollection of that 4 hours of his life.
Now when he starts to forget me and starts calling me the lady I say to him dad when did you last have a drink? Do you fancy one?
It’s only an idea but we have found he is simply forgetting to drink and he gets dehydrated and confused
 

Sirena

Registered User
Feb 27, 2018
2,294
As Rosettastone has said, this is quite common. You will not be able to talk your mum out of this, she won't respond to logic or evidence, she genuinely believes it. I know it's distressing for the family but it must also be quite scary for her.

The best thing is not to try to prove to her she's wrong - you won't be able to, and arguing about it will just upset both of you. It is very difficult when one of the family is being accused but this link might help you think about how you can approach it differently.

https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/
 

JAMMYC

New member
Jun 21, 2019
9
We found with my dad who is also on memantine and in early stages/mild is that one of the biggest issues was hydration
Back in March he became delusional and absolutely convinced it was 2004 and he had to go to work and run his business but that he didn’t want to anymore and it was time for him to pack it up. This came out of nowhere and was very hard to deal with. We didn’t know what to do and 111 told us to keep giving him water. In the end with plenty of water he came back to normal, or his normal now, and has absolutely no recollection of that 4 hours of his life.
Now when he starts to forget me and starts calling me the lady I say to him dad when did you last have a drink? Do you fancy one?
It’s only an idea but we have found he is simply forgetting to drink and he gets dehydrated and confused
Thank you so much for your message. I will look out for the dehydration x
 

Rach1985

Registered User
Jun 9, 2019
412
Thank you so much for your message. I will look out for the dehydration x
Like I said it might not be that, we are still new to this too, but he is terrible at not drinking now so just an idea to look out for
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,941
Nottinghamshire
Even if it's not dehydration that's causing the problem I agree with @Rach1985 it's always a good place to start. My dad used to get much more confused when he was dehydrated and if something as simple as a drink can help that's great. I think it's something that's easy to overlook. We drink when we're thirsty PWD don't always know they are.
 

JAMMYC

New member
Jun 21, 2019
9
HI all,
Just an update (for anyone who is dealing with the same issue). We left it for sometime hoping things would ease off and then COVID happened and we have been shielding her but in the end I contacted her Doctor and he referred her back to the Memory Clinic and someone came out to assess her. She was convinced that my Dad was there and bringing people into the house (my Dad died last September) so they put her on to a very low dose of Respiridone. It eased off slightly but after a month she was back to the delusions just as before. They upped the tablets again and things have been ok for a few months until recently when she has started talking like my Dad is there again :( They were married for 57 years so it can't be easy accepting he has gone.
I've got to say since she started on the Respiridone we have definitely lost a little bit more of Mum. She doesn't look the same, she acts differently and I'd go as far to say I feel they are bringing the illness on quicker. I can't believe at the beginning of this year she was driving, doing her own shopping and was very independent. Now I am border line ready to move in with her to help. I wonder if anyone else feels the same about this type of drug? I read an article in the Daily Mail yesterday about how many prescriptions have been issued during COVID to Dementia patients. One person had said they thought it brought death quicker for their parent :( I am really starting to think the same. At the same time the illness is progressing obviously. Its like being in a tug of war thinking one thing then an other. I just feel totally helpless to be honest. We have also been told she has Alzheimers but also Vascular Dementia so I'm not sure if this is quickening this horrible illness x
 

canary

Registered User
Feb 25, 2014
13,894
South coast
Having both Alzheimers and Vascular dementia is a common combination.
Vascular dementia tends to go down in "jumps", some of which can be quite big, so it is common for some changes to happen very quickly with this type of dementia. A lot can happen in dementialand in 10 months.

It sounds like your mum has gone back in time, which is what happens with dementia. The memory loss means that she is remembering an old memory of, say, 20 or 30 years ago and to her it feels like a recent memory - from yesterday, or even earlier on in the day.
There is nothing that can stop this and if she is not upset by it, or easily distracted then the best way to deal with it is not to contradict her (which will make her angry, because she knows that she is right :rolleyes:), but to use compassionate communication and/or make neutral noises. I got very good at saying - well, well ............. uh huh ..........how lovely .............. I should like to have seen that etc. Respiridone is very useful when the delusions and confabulations make them fearful and aggressive. Without it, the very stress would probably shorten their lives. Like everything, its a balancing act. Could you talk to the doctor who prescribed it?
 

Sarasa

Registered User
Apr 13, 2018
2,002
Hi @JAMMYC , I'm sorry things have progressed with your mother and sorry to hear about your father's death too. Lots of big changes for you and for your mother.
Vascular dementia tends to go in steps, so it could be your mother has had a big step down recently, it could be the ongoing covid crisis making things more difficult or it could be the drugs. When my mother was at home the memory clinic wanted to put her on risperidone. I wasn't anti the idea, just worried that mum who lived alone wouldn't take it properly, as by then she was confused by the (non-critical) other meds she took. I also read up on side effects and I thought that things like balance issues would be a worry for someone on their own. On the other hand she was calling out the police and fire brigade quite often, was convinced her neighbours were stealing from her and was having extremely alarming mood swings, when she went into total meltdown. In the end I moved her to a care home near me where they put her on a dose of lorazepam. This seems to have flattened her mood, but her walking has slowed right down and her balance isn't good. That may have happened anyway, as it was declining when she was at home. On the other hand her meltdowns were doing dire things to her blood pressure and perhaps increasing her chance of a stroke.
Does your mother have any help coming in or is it just you? I would think long and hard before giving up your life to care for her. Some people can do, and I stand in awe of them, but many like me can't.
ALso I wouldn't altogether believe anything I read in newspapers about the use of drugs. Maybe these pages will be of help
 

JAMMYC

New member
Jun 21, 2019
9
Thank you for your responses. I think I expected a very slow decline so knowing that vascular dementia can be a big step is useful thanks :)
And yes I need to try and not contradict her .... I can't help it ... I need to stop ... she keeps saying "oh your Dad sitting doesn't help me" and I wonder what your Dad wants for tea Ive not seen him for a while .... and I say Mum, Dads dead :( I feel horrible that I am so abrupt with her at times. I find it really painful when she talks about him but I need to remember its not about me and find better ways of handling these situations. It feels like she is in a bubble and for the people on the outside no-one really tells you how to cope. I'm finding it pretty difficult at the moment mentally.
Myself and my Brother are doing our best and at the beginning I was thinking she's not going in a home, over my dead body, we will do it all. Reality is I work full-time, fortunately my Brother is finishing work soon so he will have time on his hands but I'm pretty sure he doesnt want to become a 24hr carer. I think with my Dad dying and knowing what he was like, I know he wouldn't want us to have to hand their house over to SS. Its an awful lot to work out. I don't know if I should be thinking of today or looking far ahead. What do you do? What should I do?
At the moment we do all her tablets. They are sorted every night, one of us is there to give her them and of a morning they are ready for her to take. I do her shopping etc. She is still managing, just, to make her meals although between us both we take her to our houses and make sure she has a decent meal and has time away from 'Dad' :confused: then she wants to rush home to make sure he is ok!! o_O
Stay safe everyone and thank you again for responding, it is so useful x
 

Sarasa

Registered User
Apr 13, 2018
2,002
Hi @JAMMYC, I moved mum to a care home as I couldn't move in with her and moving in with me would have meant my husband moving out. It wouldn't have worked even if he had agreed. Our house isn't suitable, mum didn't see that there was anything wrong with her, and she'd have been wandering off at the drop of the hat. We also rub each other up the wrong way at times, and I really am not carer material. You just need to do the best for your mum and if that means selling her house and all the money disappearing into care home fees that is what is going to be needed. In the meantime I'd get carers set up (if you haven't already) to keep an eye on her and make sure she's taking her medication properly and see how things go.
@canary mentioned compassionate communications. This is the link to a thread about it. I found it very difficult to do, but there are things in there that are very useful Just don't beat yourself up if it doesn't always work.
 

Sam51

Registered User
Oct 23, 2020
22
As it's so hard isn't it ,I work full time too so moving in with mum is out of the question .My mum is refusing carers saying she can manage herself ,she forgets medication ,she spends most of the time on the phone ringing family constantly saying the same things over and over again.Her last phone bill was over £400 .
She as no money so we have to help out .
I'm finding that I worry about her constantly and feel like there is no help out there it's taking weeks for her assessment to be done and she's being awful to me because I went behind her back to tell her doctor of my concerns .
Because she won't accept help she will end up a danger to herself and will have no choice and have to go into care .
Why is life so hard !!
 

JAMMYC

New member
Jun 21, 2019
9
As it's so hard isn't it ,I work full time too so moving in with mum is out of the question .My mum is refusing carers saying she can manage herself ,she forgets medication ,she spends most of the time on the phone ringing family constantly saying the same things over and over again.Her last phone bill was over £400 .
She as no money so we have to help out .
I'm finding that I worry about her constantly and feel like there is no help out there it's taking weeks for her assessment to be done and she's being awful to me because I went behind her back to tell her doctor of my concerns .
Because she won't accept help she will end up a danger to herself and will have no choice and have to go into care .
Why is life so hard !!
Life is very tough at times. I think our parents no matter what illness still believe they are independant and can do everything themselves. OMG I can't believe she ran the phone bill up to £400 !!! Its funny but its not funny!
I know exactly what you mean about the worrying constantly, I do the same, it wears you out doesn't it and I also agree that there doesn't seem to be much help. I suppose nagging the Doctor is the only thing to do. They do have a duty of care so they need to speed up!
Is she claiming Attendance Allowance? You need to make sure she is getting benefits she is entitled too. I would like to get a Disabled badge for when I take my Mum out (which is not at the moment) but reading up it looks like Alzheimers doesnt necessarily qualify you for one. Although her walking is now very slow and she doesn't walk far before saying thats it I can't do anymore 😖 She also has COPD and Asthma (which is another story taking her inhalers). 🙈 My partners Mum died last year (a month before my Dad) with vascular dementia. We went to look at some homes and honestly, I wouldn't have put my dogs in them! I can't believe this is how our old people end up at times.
I hope you get things sorted out with carers. I am hoping a care home will be the very last resort for my Mum but we have to do what is best for them at the end of the day I suppose. xx
 

Sam51

Registered User
Oct 23, 2020
22
Thanks for your reply Jammyc,
I will look into attendance allowance ,I agree about care homes ,my mum would not be happy there ,I will just have to get a second job to pay her phone bills 😊sorry to hear about your mum and partners dad ,hope to hear from you again x
 

My Mum's Daughter

Registered User
Feb 8, 2020
44
I will just have to get a second job to pay her phone bills 😊
Sam I changed Mum's phone plan to include day and night calls. I then remove her address book and replaced it with one without mobile numbers in it. This has really helped to reduce her monthly bill.
 

Sarasa

Registered User
Apr 13, 2018
2,002
My mother racked up a large bill phoning the operator to connect her to numbers and using the speaking clock. This racked up a bill that had British Telecom phoning me to ask if my mother had dementia. After that we changed her plan, which helped, and I had access to 'manage' her account. This helped too as I could see who she had phoned and who had phoned her. This didn't last too long as things progressed and mum is now in a care home
 

Sam51

Registered User
Oct 23, 2020
22
Thanks so much for your tips I will look into it ,hopefully I can get her bill down x