Parents with Dementia and Alzheimer's

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Resurrecting this as my mum has Alzheimer’s. It’s still classed as mild but I’m not so sure.

Yesterday was my graduation and all she could go on about was the number of black people graduating and how dare they come here for her to pay for. I’m mortified and angry with her.

I know she can’t help it but let’s face it, the thoughts are there already, regardless of if she’s lost her filter. I tried giving her home truths about how wrong she is on every level but not sure how much she took onboard.

It’s like I’ve been transported back to the 70s. I’m so sorry, I just needed a place to vent. I actually wrote my dissertation on Dementia and I know she can’t help it and that arguing was futile.
 
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Warriorqueen said:
Resurrecting this as my mum has Alzheimer’s. It’s still classed as mild but I’m not so sure.

Yesterday was my graduation and all she could go on about was the number of black people graduating and how dare they come here for her to pay for. I’m mortified and angry with her.

I know she can’t help it but let’s face it, the thoughts are there already, regardless of if she’s lost her filter. I tried giving her home truths about how wrong she is on every level but not sure how much she took onboard.

It’s like I’ve been transported back to the 70s. I’m so sorry, I just needed a place to vent. I actually wrote my dissertation on Dementia and I know she can’t help it and that arguing was futile.
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I’m so sorry you’re going through this. Try not to be too angry with her, some forms of dementia can drastically change a person’s personality beyond recognition. It is such a cruel illness. It’s so natural to become cross with them and find it difficult to deal with.

Congratulations on your graduation by the way.
 
I don't know if I would agree that the thoughts are already there and she has lost her filter.

dementia and associated diseases damage and change the brain (as you know, sorry to preach to the choir). The radical personality changes are part of it and someone saying shocking racist things may genuinely be or have been no more racist in the full of their health than the person being violent or crudely explicit in latter stage dementia was when they were not afflicted. I honestly think it is the disease twisting and breaking people, not a case of hidden thoughts and feelings coming out.

I am so sorry that happened on a really important day for you. I hope in time that sense of shame and anger will fade and you can feel proud of yourself both for graduating and for having your mother there as part of a landmark day, despite the challenges and pain it brought you personally.
 
So sorry you are going through this. I am going through this with my mother and she has not even been diagnosed. I live overseas and cannot travel because of my own illnesses. My brother took over as POA with no discussion in the family. The problem is he’s extremely passive. She became much worse after my dad died last year and this past weekend was horrendous. She has moved house very recently and is very confused about her new home. Saturday was more than a four hour session of my mum reporting to me that loads of people were in her house, and animals everywhere and she assumed I was her sister. She wanted to call the police to report it and I wish she had because it would have been the intervention that she needed and kicked my brother into action. I have told him repeatedly that she needs to see a doctor asap and he’s done nothing about it! How do I override this POA?
Today she was completely lucid and telling me she thinks my brother is trying to convince her she’s going loopy. It’s so sad and it’s making me so stressed because he’s neglecting her horribly.
 
Sabbie said:
So sorry you are going through this. I am going through this with my mother and she has not even been diagnosed. I live overseas and cannot travel because of my own illnesses. My brother took over as POA with no discussion in the family. The problem is he’s extremely passive. She became much worse after my dad died last year and this past weekend was horrendous. She has moved house very recently and is very confused about her new home. Saturday was more than a four hour session of my mum reporting to me that loads of people were in her house, and animals everywhere and she assumed I was her sister. She wanted to call the police to report it and I wish she had because it would have been the intervention that she needed and kicked my brother into action. I have told him repeatedly that she needs to see a doctor asap and he’s done nothing about it! How do I override this POA?
Today she was completely lucid and telling me she thinks my brother is trying to convince her she’s going loopy. It’s so sad and it’s making me so stressed because he’s neglecting her horribly.
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If you want to raise concerns about POA then you need to contact the Office of the Public Guardian. If you have concerns about your mums welfare contact Social Work and raise an Adult Protection concern - fyi I am in Scotland so not sure if the terminology is different if you are in another part of the UK but I imagine it’s much the same.
Also, if you can, the next time your mum phones and says there people in the house etc phone the police on her behalf. A new environment always makes people with dementia increasingly confused and agitated so hopefully with time she may settle a bit.
 
Sabbie said:
So sorry you are going through this. I am going through this with my mother and she has not even been diagnosed. I live overseas and cannot travel because of my own illnesses. My brother took over as POA with no discussion in the family. The problem is he’s extremely passive. She became much worse after my dad died last year and this past weekend was horrendous. She has moved house very recently and is very confused about her new home. Saturday was more than a four hour session of my mum reporting to me that loads of people were in her house, and animals everywhere and she assumed I was her sister. She wanted to call the police to report it and I wish she had because it would have been the intervention that she needed and kicked my brother into action. I have told him repeatedly that she needs to see a doctor asap and he’s done nothing about it! How do I override this POA?
Today she was completely lucid and telling me she thinks my brother is trying to convince her she’s going loopy. It’s so sad and it’s making me so stressed because he’s neglecting her horribly.
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I’m not sure what you can do to override the POA but the police is an excellent idea. When my lovely dear MIL was suffering a lot my FIL had a neighbour who was a doctor knock the door. She had been hearing my MIL have episodes and popped by to chat with FIL. She advised he ring for an ambulance the next time she fell out of bed. He did and from then they began to get a lot more support.

your brother is possibly in denial and trying to preserve his mum in some way but she needs a diagnosis to access support.
 
Thanks for the advice and support. Back in February my brother said she needs assessment asap, but did nothing about it! He refuses to cooperate/work with me which is why he took over as POA with no discussion. He is also executor of her will. Again, no discussion with me. I have a horrible feeling he’s waiting for her to get so bad she goes straight in a home so he does have to deal with her anymore. It’s truly heartbreaking and I have so much anxiety and guilt over it. I can only help her from afar and feel like I am not doing enough. Everyone knows dementia is awful, but it’s only when it hits your family directly that you feel its devastating effects.
 
Sabbie said:
Thanks for the advice and support. Back in February my brother said she needs assessment asap, but did nothing about it! He refuses to cooperate/work with me which is why he took over as POA with no discussion. He is also executor of her will. Again, no discussion with me. I have a horrible feeling he’s waiting for her to get so bad she goes straight in a home so he does have to deal with her anymore. It’s truly heartbreaking and I have so much anxiety and guilt over it. I can only help her from afar and feel like I am not doing enough. Everyone knows dementia is awful, but it’s only when it hits your family directly that you feel its devastating effects.
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If you have concerns you can report to the Office of the Public Guardian but if your brother is sole attorney and is removed you will need to apply for a Deputyship order to manage mums affairs and they very very rarely grant Deputyships for health and care decisions, usually just financial.
 
I’m actually after some advice please? My father had a massive stroke a couple of years ago. He then developed vascular dementia.
He is in a care home as is really bad. Incontinent. Incoherent.
He is self funding.
I have an assessment for continuing care which is virtually impossible to get I know.
I just wondered if anyone had been through the process? I have deputyship
 
Drea1984 said:
I’m actually after some advice please? My father had a massive stroke a couple of years ago. He then developed vascular dementia.
He is in a care home as is really bad. Incontinent. Incoherent.
He is self funding.
I have an assessment for continuing care which is virtually impossible to get I know.
I just wondered if anyone had been through the process? I have deputyship
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We went though CHC with my dad when he had dementia. Managed to get full NHS funding.

My advice is to go to every meeting and lay it on thick. Do not sugar coat things. Think of his very worst day and base every answer on that.
 
HoGi said:
We went though CHC with my dad when he had dementia. Managed to get full NHS funding.

My advice is to go to every meeting and lay it on thick. Do not sugar coat things. Think of his very worst day and base every answer on that.
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Thank you for replying!
I feel so alone with it all. It’s taken 6 months to get to the first assessment.
How long did the whole process take please?
 
Following this as my Mum has been dx with Alz too. My sister does the best she can (she lives 20 mins away), but she works 6 days a week and spends her only day off with Mum. I try and get down every fortnight (I'm 4 hours away and desp to move, but house prices are double what they are near me, and I can't afford to move atm). We have a brother an hour away, but he doesn't really help as his wife has MS. My mum swings from feeling fairly cheerful (in a juvenile kinda way) to depressed and wanting to finish things (she's a staunch Methodist and we're pretty confident she won't do this, due to her beliefs). She's had an assessment (she couldn't draw a clockface) and we were told she's in mid stage. Her main problems are forgetfulness (she's on meds) but we struggle as our mum can't really walk but refuses to use a wheelchair. My sister and I struggle holding her, as we both have club foot from birth and fall easily ourselves. (We look like a group of girls after a night on the tiles, wobbling down the road! 😂) Please accept my apologies for jumping on this post, but wondered if anyone else had trouble telling their parent that they need to accept their diagnosis? My mum often says the doctor told her she's fine now and doesn't have Alz, but we know she hasn't been since we took her. She says she can walk perfectly well and that she goes for lots of walks and to church, but the church haven't seen her in weeks and the neighbours say she doesn't go out, unless we see her. Any help gratefully received. TIA x
 
Trixiem said:
Following this as my Mum has been dx with Alz too. My sister does the best she can (she lives 20 mins away), but she works 6 days a week and spends her only day off with Mum. I try and get down every fortnight (I'm 4 hours away and desp to move, but house prices are double what they are near me, and I can't afford to move atm). We have a brother an hour away, but he doesn't really help as his wife has MS. My mum swings from feeling fairly cheerful (in a juvenile kinda way) to depressed and wanting to finish things (she's a staunch Methodist and we're pretty confident she won't do this, due to her beliefs). She's had an assessment (she couldn't draw a clockface) and we were told she's in mid stage. Her main problems are forgetfulness (she's on meds) but we struggle as our mum can't really walk but refuses to use a wheelchair. My sister and I struggle holding her, as we both have club foot from birth and fall easily ourselves. (We look like a group of girls after a night on the tiles, wobbling down the road! 😂) Please accept my apologies for jumping on this post, but wondered if anyone else had trouble telling their parent that they need to accept their diagnosis? My mum often says the doctor told her she's fine now and doesn't have Alz, but we know she hasn't been since we took her. She says she can walk perfectly well and that she goes for lots of walks and to church, but the church haven't seen her in weeks and the neighbours say she doesn't go out, unless we see her. Any help gratefully received. TIA x
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To be honest it’s awful. I just go along with it really when my dad makes no sense. He is also deaf so you have to shout. There’s no point correcting him. When she says she no longer has it, just say, oh yes it’s good isn’t it? Sounds insane I know but really there is literally no point trying to get your point across 😔
 
Drea1984 said:
Thank you for replying!
I feel so alone with it all. It’s taken 6 months to get to the first assessment.
How long did the whole process take please?
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Ours was slightly different to normal in that dad had been ready to discharge from an NHS hospital for around 3 months, but they knew home wasnt suitable, so he was then sectioned (they argued it was the fasted way to get him in the right place and tbf the secure psychiatric unit was much better for him than the NHS ward) so it was in their interests to get the CHC assessment done ASAP and then find suitable accommodation.

I think he was initially sectioned for 28 days and then the CHC process started and he eventually moved into a nursing home I think about 8 weeks later.

He scored highly on mobility, incontinence, food (he had false teeth but refused to wear them so was an aspiration risk) and then the cognitive section. He also had scores for breathing as he has asthma that he wouldn't/couldn't treat and the aspiration risk. I think that was it.

But definitely think of his worst day and then some. They will beat you down whatever you say and try to score it lower. I think you should get a copy of the paperwork beforehand, so I recommend printing it off and making notes so you are prepared. And don't be afraid to speak up! You are his voice and need to argue for him x
 
Drea1984 said:
To be honest it’s awful. I just go along with it really when my dad makes no sense. He is also deaf so you have to shout. There’s no point correcting him. When she says she no longer has it, just say, oh yes it’s good isn’t it? Sounds insane I know but really there is literally no point trying to get your point across 😔
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I think we're gonna have to do the same tbh. I think I've been doing things all wrong, because when she says things I know she can't manage, I've always said differently to her. For instance, this morning, she said 'don't pick me up, I'll walk to the cafe' and I know that won't happen, but after reading your post, I thought, just say yes and still pick her up, so she feels good about herself. I think with the walking it's the thing that concerns her the most, all her chats are solely about how she can still walk, so it's obviously worrying her. I said, no worries. and told my husband we'll just pick her up as usual, and say we're early and thought we may as well. I think your way will definitely help her as much as it'll help me not stress about things. Thank you.
 
Lalalalaaaaaa85 said:
This doesn’t seem to get much traffic but my mum was diagnosed last week with mixed dementia, vascular and Alzheimer’s so I thought I’d look for a thread. Feel almost empty, like I can’t process it.

Going to go back and read everything that’s been posted now.
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So sorry to hear this. If she hasn't already put them in place speak to her about putting Lasting Power of Attorney in place and ask if her Will is up to date.

It will be hard and her personality might do a complete 180 (my sweet as pie grandmother started to become quite nasty at times).

Don't argue with her if she says something that isn't possibly true (like I saw auntie Mable who has been dead for 20 years yesterday), just agree and try and move the conversation on.

Food preferences might change over time. It can affect the taste buds and textures might become an issue when eating.

Most importantly don't kill yourself trying to care for her if this is your intention. Ask for help when you need it.
 
Lalalalaaaaaa85 said:
Thank you @Libertine1975 ❤

Does anyone have advice on supplements or diet changes I can try and persuade my mum to try to keep her in the best health?
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Supplements don’t do anything if they aren’t needed. She should be eating a balanced diet, as we all should. Has she started on memory treatment? It’s used to try and slow the progression of the illness.

Has your mum had bloods taken recently? That will have highlighted if she is deficient in anything (folate, b12, vit D etc) and they will be prescribed as necessary.

I’m sorry that you are experiencing this. I couldn’t agree more with Libertines comments, especially about Power of Attorney. It’s so important if your mum is willing to get legal powers put in place so that you can advocate on her behalf when she is no longer able to ♥️
 
ack13 said:
Supplements don’t do anything if they aren’t needed. She should be eating a balanced diet, as we all should. Has she started on memory treatment? It’s used to try and slow the progression of the illness.

Has your mum had bloods taken recently? That will have highlighted if she is deficient in anything (folate, b12, vit D etc) and they will be prescribed as necessary.

I’m sorry that you are experiencing this. I couldn’t agree more with Libertines comments, especially about Power of Attorney. It’s so important if your mum is willing to get legal powers put in place so that you can advocate on her behalf when she is no longer able to ♥️
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She’s been going to memory clinic, they’re now sending her notes and diagnosis back to her GP to follow up. She’s coming to stay this weekend so I’ll find out more about what they’ve done so far
 
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