My Mum has Lewy Body.

[Heliotropic1]

I'm currently living in the UAE but my Mum lives in the UK. She was diagnosed 2 years ago and is becoming increasingly muddled but knows she is. She has hallucinations and sees people and she says time freezes. She has a good network of friends and I ring three or four times a week. She reluctantly has carers in twice a day but this is good as it is a routine for her. My sister is insisting I move back to be hands on but Mums friends tell me my sister doesn't visit Mum. I have three children here and can't afford to move back. The anxiety and guilt I feel is overwhelming.
Does or can anybody tell me or give me any idea how Mum will be feeling? The therapist says Mum is not frightened about the hallucinations and when I talk to her she talks about them.
she regularly gets uti's too.
Any help or advice would be great.
Thank you.

 

[cobden28]

I'm currently living in the UAE but my Mum lives in the UK. She was diagnosed 2 years ago and is becoming increasingly muddled but knows she is. She has hallucinations and sees people and she says time freezes. She has a good network of friends and I ring three or four times a week. She reluctantly has carers in twice a day but this is good as it is a routine for her. My sister is insisting I move back to be hands on but Mums friends tell me my sister doesn't visit Mum. I have three children here and can't afford to move back. The anxiety and guilt I feel is overwhelming.
Does or can anybody tell me or give me any idea how Mum will be feeling? The therapist says Mum is not frightened about the hallucinations and when I talk to her she talks about them.
she regularly gets uti's too.
Any help or advice would be great.
Thank you.

You live abroad, have three children out there with you and can't afford to move back to the UK - so why is your sister insisting that it's you that has to be 'hands on' for your Mum's care? Why can your sister apparently not do more to help your Mum?

 

[Heliotropic1]

She's very 'busy' does not return neighbours calls or friends calls about Mum. She's offended several of Mums friends by being rude. Mums neighbour takes her shopping. Mum doesn't see her week to week, it's been confirmed by friends. So I'm coming back to visit and my sister has asked me to child mind her son while she does over time. She also tells Mum she smells. Horrified. [emoji20]


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[Bill Owen]

Lewy body

i'm currently living in the uae but my mum lives in the uk. She was diagnosed 2 years ago and is becoming increasingly muddled but knows she is. She has hallucinations and sees people and she says time freezes. She has a good network of friends and i ring three or four times a week. She reluctantly has carers in twice a day but this is good as it is a routine for her. My sister is insisting i move back to be hands on but mums friends tell me my sister doesn't visit mum. I have three children here and can't afford to move back. The anxiety and guilt i feel is overwhelming.
Does or can anybody tell me or give me any idea how mum will be feeling? The therapist says mum is not frightened about the hallucinations and when i talk to her she talks about them.
She regularly gets uti's too.
Any help or advice would be great.
Thank you.

hi im bill. I been there .look this is goining to be very hard for you both .my wife had l/b .pass away in march 2016. You will fine you mam will get a lot wores.sorry im dislix so bare with me . You will need s/worker help in time.and care from out side.to help you both.keep strong .

 

[Agzy]

She's very 'busy' does not return neighbours calls or friends calls about Mum. She's offended several of Mums friends by being rude. Mums neighbour takes her shopping. Mum doesn't see her week to week, it's been confirmed by friends. So I'm coming back to visit and my sister has asked me to child mind her son while she does over time. She also tells Mum she smells. Horrified. [emoji20]


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To be brutally honest I think your sister is trying to do what many siblings/relatives do faced with caring for someone with dementia, and that is to force you to feel guilty enough to give up everything you have to provide the care that they don't want to provide. Passing the buck comes to mind. As for you, think about what your mum would say back in the day if she heard of someone doing this this to some one and I bet the answer is she would be appalled. Give what you can when you can but please don't cave in to emotional blackmail. Good luck.

 

[Heliotropic1]

I think she wants to destroy my marriage. Mum understands I can't move back at the moment. My sister said I'm not interactive so I sent a screen shot of my out going emails and phone calls which were all related to Mum.


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[Spamar]

Emotional blackmail is just not strong enough for what your sister is trying to do to you. I'm not allowed to write what I would say to your sis, it just makes me glad I have no siblings!
You stay in the UAE, sort a social worker, keep on at them, and see what happens. Your order of priorities is children, hubby, then mum. Sis comes nowhere!

 

[Amy in the US]

So sorry to hear about the situation, which must be awful for you. Sounds like 2 problems: dementia and the dynamic with your sister.

Just a thought, but what about the next time you visit, don't tell anyone. Not you mum, your sister, or anyone else. Just turn up and see for yourself what the situation is like.

One way for you to see how your mum is coping would be for you to stay with her 24/7 for a week or two, to get a clear picture.

Try to remember that this isn't your fault. The dementia is to blame, not you. Best wishes.

 

[angecmc]

I am sorry, but you giving up your life will not make a bit of difference to your dear Mum, I doubt it would be what she would want. Not everyone can be a carer, your sister is clearly one of these people, if she doesn't want to do it nobody can force her to, but then she should not be trying to force you either, I am guessing she is doing this to you to make herself feel less guilt. It sounds like you are doing as much as you can being a long distance carer, you are trying to be supportive. ignore your Sister and her ridiculous demands. This disease sadly can tear families apart, I no longer speak to my brother, fortunately my Sister and I support each other through all the bad times. Take care xx

Ange

 

[Oh Knickers]

Hi Heliotropic1,

I am going to suggest the following as this sounds as this not only very complicated but also worrisome:

Local Alzheimer's Society near your mum. They will be a mine of local information - who to contact, how the system works, what other support there is available.

Admiral Nurses - even if they are not in your area - they are also sanity savers as are Alzheimers Soc.

When you come over see if you can get a home visit arranged with your Mum's GP. Partly to try and stop your mum going into Hostess mode.

You could consider refusing to sit your nephew as that is not the purpose of your visit.

If you can it may be worth trying to get POA for Health and Finance sorted as well as it does not sound as though your sister is helping. It will give your authority. Can be done online with help from CAB or through a solicitor Your mum does need to be assessed as having capacity (able to make decisions and retain some of the information)

Sorry, this sounds very difficult for you. You will find others who will come up with support and information on Talking Point,

 

[Heliotropic1]

Thank you for your replies I'm feeling calmer and happier having read the replies. I will refuse babysitting for my nephew as it's taking time away from Mum and if my sister wants to do over time I'm sure she has friends who can help out.
Mum has an excellent network of friends who now have my number and permission to contact the dr if needs be.
Sad to see someone a shadow of herself though. I talk to her about my lovely childhood and things as she finds recent memories more difficult. Thank you all. This app is a real find.


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[Heliotropic1]

I am a grand daughter who suffers from the constant tension between my Aunt and my mum in regards to my lovely grandma who suffers with dementia.Despite being 8 hours away by plane from the UK and the fact I'm in my last year of university with a Dad who has to book leave and a brother who is in the stressful situation of choosing his university people still seem to find the need of giving their input. We have lived far away from family as far as I can remember. My grandma has always been the most calmest and selfless person I've met in my life. Tonight most like other nights I found my Mum reading through screenshots, since this has become a regular thing I asked what was going on. Surprisingly even though my Mum called my grandma to check up on her and just like my 21st birthday she was fine; she was still a victim to the 'she hasn't decided when she's going to visit' type of accusations. Two months ago we decided that at the end May we will be visiting and with no time limit. My aunt has not provided this information to those who perceive my Mum as neglectful, I couldn't count the times on my hands where she has called the neighbours and friends of my grandma out of fear but my aunt who lives a short drive away seems to turn up once in a blue moon and we've heard numerous of times that she doesn't return return calls or act polite in front of those who lend a hand. Pretty much sick of the double standards and the judgement when she has her best interest at heart. I'll forever love my grandma and I still see her as the loving soul she always has been. I believe that care and attention a thousand miles away beats the neglect from her other daughter who wouldn't step out of her back door. Has any got any advice on how to address this because the one person who my grandma trusted the most sent a what's app message to my Aunt saying she had two conversations going on today and how she found it comical. Due to the fact we do not speak to my grandfather who left my grandma 20 years ago my Aunt is the other power attorney and the situation is fragile. Do I email the contact who finds it 'comical' or rise above it?


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[la lucia]

If you can it may be worth trying to get POA for Health and Finance sorted as well as it does not sound as though your sister is helping. It will give your authority. Can be done online with help from CAB or through a solicitor Your mum does need to be assessed as having capacity (able to make decisions and retain some of the information)

Your mum.....

This is great advice but actually you don't need your mum to be "assessed" you need a non-family witness - neighbour or friend who has known your mum a long time - and obviously the attorneys -preferably 2. The requirements for mental capacity are that your mother understands at the time of signing. It doesn't matter if she forgets later. But you don't need anyone 'professional' to assess that. But the POAs have to be resident in the UK so who would be honest and reliable? Without POAs in place life gets complicated and has to go to the court of protection when your mum has lost capacity.

If your mother has assets over £23,000 including her home if she lives alone, she will be self-funding for any care. If not Social Services will help. It might be worth investigating this when you come to the UK for a visit. Your mum needs a proper support network put in place now even if she's still independent.

She's entitled to Attendance Allowance (not means tested) and when this is in place, Council Tax reductions. Age UK or Alzheimer's Society will help with the forms. But you could arrange for all the forms including POA to be sent somewhere secure in the UK for when you arrive.

There's lots of information on this website and people in the forum are always willing to answer questions too.

I'm sorry but I don't really understand the last post about your grandmother probably best to start a different thread for that. Please, if possible break longer text into paragraphs? It's easier to read. ☺

 

[BR_ANA]

Do you have a mother and a grandmother with dementia?

Or last post was written by your daughter?

About hallucinations: there are good and bad ones: my mother used to call invisibles puppies. That was a good one. She seemed to enjoy. However, One other resident of CH had hallucinations about a baby crying that she couldn't find, that distressed her


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[Heliotropic1]

My daughter wrote it her grandmother has dementia.


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[Heliotropic1]

It won't let me start a new thread for some reason until I've had ten replies? I tried everything.


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[jenniferpa]

Well you can't send a PM (private message) until you have 10 posts, but there is no reason why you can't start a new thread. In fact, I'm assuming you started this one? If you are getting an error message perhaps you can tell us what it says?

 

[Izzy]

Thanks for sending us the error message Heliotropic1. I hope you're sorted out now.

 

[Heliotropic1]

Pros and cons of registering my Mum's house in mine and my sisters name? I'm not sure I want to but my sister does.


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[arielsmelody]

Pros and cons of registering my Mum's house in mine and my sisters name? I'm not sure I want to but my sister does.

So your mum has dementia and owns her house without a mortgage? Does anyone have financial power of attorney for your mum?

If you and your sister want to buy her house at full market value - that's not impossible but you would have to do everything properly and you would need to check the tax implications - it might end up costing more money overall.

If you and your sister want to change the ownership of her house without giving her any money - that's not legal.