How should I support my elderly Mum, who has Alzheimer's?
December 20, 2023 5:16 AM Subscribe
How can I support my elderly Mum, who has Alzheimer's? She lives at home with my Dad and my brother (who is nearly 50) who cultivates a toxic, even unsafe, environment that is detrimental to my Mum's care but also makes it difficult to provide support? (More inside, inevitably)
I'll try to keep this as short as I can. Sorry if some of these details seem irrelevant. I share in the hopes the context is useful, but I'm not sure that, from the inside, I can see the edges to a situation decades in the making.
My brother and I come from a dysfunctional family background. Angry shouting and screaming were the norm. The threat of violence loomed more or less intensely as other family members came (sometimes for extended periods) and went. I have myself been recently diagnosed (in my 40s) with bipolar disorder and I'm convinced behavioural disorders are present in other close family members (including my Mum and brother). I have reason to think my brother was sexually abused as a child by another family member (not a parent). My mental health providers refer to my own childhood as emotionally abusive. So for Britain in the 1970s and 1980s, all fairly normal.
My Mum was diagnosed with Alzheimer's a few years ago. She is now in her early 80s. This was, in my opinion, a late diagnose due to a resistance on my Dad's part to seek timely medical help. My family has always been reclusive, suspicious of the authorities, and resistant to outside help. During my latest visit I could see that my Mum's long-term memory is starting to crumble, after years of worsening short-term memory problems.
My brother, several years older than me, has lived with Mum and Dad his whole life. He has never made a financial contribution to his own upkeep, my parents', or the house. If he uses the oven or washing machine on occasion, it is only for himself. He has more or less shut himself in his room (which is a no-go area) for decades. Over those decades on and off he has used strong forms of cannabis. For many years he was an avid night-time gamer. In the last decade or so, a long-term flirtation with conspiracy theories has descdended into what I believe to be alt-right radicalisation. I can only infer this from what my parents have reported of these outbursts, but territory he has veered into includes holocaust denial and, more recently, the darkest kind of conspiracy theories about the current US president.
My brother goes months without talking to my parents. The cycle swings around to being on good terms with them, but after that he uses current affairs and his conspiracy theories to bait my Mum (who has always been politically engaged) into arguments which frequently end up with him shouting agressively. From his point of view, perhaps this is normal. But he doesn't seem to see that our parents are old now. On one occassion (that I only found out about much later – Dad tends not to relay concerning information) he placed a hand on Mum's neck in a show of intimidation (she reports that he didn't hurt her). He actively tells her there is nothing wrong with her, and discouraged my parents to get COVID vaccinations (although they did anyway, which is a minor miracle in itself).
For many years I've been encouraging my parents to ask my brother to move out for their own good. For years my Dad makes the same noises – that he will deal with it, that progress is being made. You can pin this "progress" onto the cycles of my brother's behaviour. My Dad is very loving and wants to take care of everyone – to a fault, as he has certainly cultivated – perhaps inadvertantly – my Mum's agoraphobic tendencies. I think he needs to be needed, by my brother as well as my Mum. In reality, my brother needs help as much as anyone, but right now my Mum is the priority.
On my most recent visit the house was dirtier than I've ever seen it. Walls, doors and light switches are covered in sticky black grime as a result of my brother's dirty fingers (which could be because of the warehouse jobs he is sometimes able to hold down, or the residue from cannabis resin, or both.) My Dad's own clothes were filthy – and we're not talking the good kind of DIY/gardening/car repair sort of muck. At face value he has his wits about him, but his ability to cope and make good decisions is much diminished.
The upshot of all this is I visit less than I should. I feel terrible about it, but it just doesn't feel like a safe environment to visit. My brother's more-predictable work patterns (for the time being) make it a bit easier at the moment. I try to clean up the worst of the dirt when I do, but my parents refuse to have a cleaner visit, and the filth and grime returns quickly anyway. I don't feel able to confront my brother. We've had violent flare ups in our early adulthood, initiated by him. Given his more recent tendencies, I genuinely don't know what he's capable of if pushed. Or perhaps I'm a coward looking for excuses.
I've tried raising safe-guarding concerns with the local authorities, but these don't progress because my parents front that everything is OK. When I last spoke to my psychiatrist (since discharged from their specialist care) they felt compelled to raise a safeguarding concern on behalf of my parents, but I don't know what came of it. I have tried once more to raise a concern, and request an urgent care needs assessment. We'll see what happens but my expectations are low. I've sought advice from Age UK who are deeply concerned by the circumstances but can provide no actual help.
I have just given Dad an ultimatum that, unless my brother leaves, I won't be able to visit or provide other help. I don't think I mean it, but out of desperation, it seems worth a try. A last resort might be going to the police about my brother's physical intimidation, or the ongoing verbal, emotional and financial abuse (as I see them). My Dad has given my brother tens of thousands of pounds to encourage him to leave – he has the means to do so. But last time my Dad made noises in this direction, my brother's response was to quit his job. I am skeptical that the police will act without cooperation from my parents, which I doubt they'll get. My Dad asks me not to involve authorities so it feels like a betrayal of him and my brother when I do.
This has been spiralling for years, but the trend is only ever downwards. I can see that this is a situation of my parents’ making. Home wasn't a safe environment for me or my brother, and understanding and support wasn't there in the aftermath. And fundamentally, they have decided over many decades to let him stay. But I think my parents have always done the best they know how. And it's them that need the help now.
The last few years it's had a significant affect on my own mental health (which my doctors and immediately family want me to prioritise). Mainly this is out of desperation of not knowing what to do and feeling powerless to help. I'm struggling to sleep again with the worry since my last visit. But of course my Mum's wellbeing is my top priority. What can I do? Thank you.
I'll try to keep this as short as I can. Sorry if some of these details seem irrelevant. I share in the hopes the context is useful, but I'm not sure that, from the inside, I can see the edges to a situation decades in the making.
My brother and I come from a dysfunctional family background. Angry shouting and screaming were the norm. The threat of violence loomed more or less intensely as other family members came (sometimes for extended periods) and went. I have myself been recently diagnosed (in my 40s) with bipolar disorder and I'm convinced behavioural disorders are present in other close family members (including my Mum and brother). I have reason to think my brother was sexually abused as a child by another family member (not a parent). My mental health providers refer to my own childhood as emotionally abusive. So for Britain in the 1970s and 1980s, all fairly normal.
My Mum was diagnosed with Alzheimer's a few years ago. She is now in her early 80s. This was, in my opinion, a late diagnose due to a resistance on my Dad's part to seek timely medical help. My family has always been reclusive, suspicious of the authorities, and resistant to outside help. During my latest visit I could see that my Mum's long-term memory is starting to crumble, after years of worsening short-term memory problems.
My brother, several years older than me, has lived with Mum and Dad his whole life. He has never made a financial contribution to his own upkeep, my parents', or the house. If he uses the oven or washing machine on occasion, it is only for himself. He has more or less shut himself in his room (which is a no-go area) for decades. Over those decades on and off he has used strong forms of cannabis. For many years he was an avid night-time gamer. In the last decade or so, a long-term flirtation with conspiracy theories has descdended into what I believe to be alt-right radicalisation. I can only infer this from what my parents have reported of these outbursts, but territory he has veered into includes holocaust denial and, more recently, the darkest kind of conspiracy theories about the current US president.
My brother goes months without talking to my parents. The cycle swings around to being on good terms with them, but after that he uses current affairs and his conspiracy theories to bait my Mum (who has always been politically engaged) into arguments which frequently end up with him shouting agressively. From his point of view, perhaps this is normal. But he doesn't seem to see that our parents are old now. On one occassion (that I only found out about much later – Dad tends not to relay concerning information) he placed a hand on Mum's neck in a show of intimidation (she reports that he didn't hurt her). He actively tells her there is nothing wrong with her, and discouraged my parents to get COVID vaccinations (although they did anyway, which is a minor miracle in itself).
For many years I've been encouraging my parents to ask my brother to move out for their own good. For years my Dad makes the same noises – that he will deal with it, that progress is being made. You can pin this "progress" onto the cycles of my brother's behaviour. My Dad is very loving and wants to take care of everyone – to a fault, as he has certainly cultivated – perhaps inadvertantly – my Mum's agoraphobic tendencies. I think he needs to be needed, by my brother as well as my Mum. In reality, my brother needs help as much as anyone, but right now my Mum is the priority.
On my most recent visit the house was dirtier than I've ever seen it. Walls, doors and light switches are covered in sticky black grime as a result of my brother's dirty fingers (which could be because of the warehouse jobs he is sometimes able to hold down, or the residue from cannabis resin, or both.) My Dad's own clothes were filthy – and we're not talking the good kind of DIY/gardening/car repair sort of muck. At face value he has his wits about him, but his ability to cope and make good decisions is much diminished.
The upshot of all this is I visit less than I should. I feel terrible about it, but it just doesn't feel like a safe environment to visit. My brother's more-predictable work patterns (for the time being) make it a bit easier at the moment. I try to clean up the worst of the dirt when I do, but my parents refuse to have a cleaner visit, and the filth and grime returns quickly anyway. I don't feel able to confront my brother. We've had violent flare ups in our early adulthood, initiated by him. Given his more recent tendencies, I genuinely don't know what he's capable of if pushed. Or perhaps I'm a coward looking for excuses.
I've tried raising safe-guarding concerns with the local authorities, but these don't progress because my parents front that everything is OK. When I last spoke to my psychiatrist (since discharged from their specialist care) they felt compelled to raise a safeguarding concern on behalf of my parents, but I don't know what came of it. I have tried once more to raise a concern, and request an urgent care needs assessment. We'll see what happens but my expectations are low. I've sought advice from Age UK who are deeply concerned by the circumstances but can provide no actual help.
I have just given Dad an ultimatum that, unless my brother leaves, I won't be able to visit or provide other help. I don't think I mean it, but out of desperation, it seems worth a try. A last resort might be going to the police about my brother's physical intimidation, or the ongoing verbal, emotional and financial abuse (as I see them). My Dad has given my brother tens of thousands of pounds to encourage him to leave – he has the means to do so. But last time my Dad made noises in this direction, my brother's response was to quit his job. I am skeptical that the police will act without cooperation from my parents, which I doubt they'll get. My Dad asks me not to involve authorities so it feels like a betrayal of him and my brother when I do.
This has been spiralling for years, but the trend is only ever downwards. I can see that this is a situation of my parents’ making. Home wasn't a safe environment for me or my brother, and understanding and support wasn't there in the aftermath. And fundamentally, they have decided over many decades to let him stay. But I think my parents have always done the best they know how. And it's them that need the help now.
The last few years it's had a significant affect on my own mental health (which my doctors and immediately family want me to prioritise). Mainly this is out of desperation of not knowing what to do and feeling powerless to help. I'm struggling to sleep again with the worry since my last visit. But of course my Mum's wellbeing is my top priority. What can I do? Thank you.
I'm so sorry you're dealing with this, it sounds like an incredibly stressful and difficult situation. You sound like you're doing all the right things that you can to take care of yourself, so please continue to do that.
Unfortunately, as you are well aware, your parents and your brother are in the exact kind of situation that allows them to slip through the cracks of social care in the UK right now -- in a bad way, but not actually bad enough to require emergency help, which is more or less the only help available.
One place you could try to contact, if you haven't already, is Hourglass. They're a charity focused on stopping elder abuse, so they may have more resources they can direct you to. Otherwise your most likely path is probably going to be through the local council where your parents live, but it's going to be a long and tough process, as you are likely already aware. My only advice would be to keep pushing as much as you can, document when you can (take photos of the dirty house to show to the safeguarding authorities if your parents are still claiming it's okay), and above all else, look after yourself.
posted by fight or flight at 6:49 AM on December 20, 2023
Unfortunately, as you are well aware, your parents and your brother are in the exact kind of situation that allows them to slip through the cracks of social care in the UK right now -- in a bad way, but not actually bad enough to require emergency help, which is more or less the only help available.
One place you could try to contact, if you haven't already, is Hourglass. They're a charity focused on stopping elder abuse, so they may have more resources they can direct you to. Otherwise your most likely path is probably going to be through the local council where your parents live, but it's going to be a long and tough process, as you are likely already aware. My only advice would be to keep pushing as much as you can, document when you can (take photos of the dirty house to show to the safeguarding authorities if your parents are still claiming it's okay), and above all else, look after yourself.
posted by fight or flight at 6:49 AM on December 20, 2023
I don't know what the resources are where you live, but your best bet on keeping mom safe is to get her into a care home, and have your father visit her there. Are you in touch with her GP? Do you think your father would listen to the GP about what your mom needs? Would you father agree to have just your mom come live with you? Would your parents agree to come live with you together for a year and leave your brother to care for the house?
posted by SyraCarol at 1:57 PM on December 20, 2023 [1 favorite]
posted by SyraCarol at 1:57 PM on December 20, 2023 [1 favorite]
If you're in the UK, housing costs may mean your brother's choices are stay home (all the amenities, frightened roommates, free) or be homeless. From his perspective, everything is golden. For your parents, to turn him out when he is clearly non-functional would mean dealing with shame, guilt and possible violence. This is not a knot you can slice through - you need professionals involved from the council, local mental health, etc etc. And police reports for any violence or threats (threats count!) directed at you by your brother.
I would keep visiting in your shoes on a very strict routine - like I'm coming down every second Thursday, make sure brother is OUT or in his room. Can you bring a hired cleaner during your visit to help deep clean?
And to be really up-front - where is the money coming from? Are you paying money towards this? Who is getting the house? Who will pay for your parents' caregivers when they get to that stage? When your parents are gone, what's their plan for your brother - he gets the house because he needs it while your parents assume you are fine? Are you going to do that practical stuff or are you lucky enough to be able to say it's not worth it and refuse to get involved?
You can't fix that level of emotional mess without most of the people involved ready and able. Focus on the practical and get yourself back into therapy or in contact with friends in similar situations to vent - somewhere you can deal with the emotional pain of having to be a bystander to a family disaster.
I am so sorry - you are in an awful awful situation and it is very painful. Please be kind to yourself.
posted by dorothyisunderwood at 8:40 PM on December 20, 2023
I would keep visiting in your shoes on a very strict routine - like I'm coming down every second Thursday, make sure brother is OUT or in his room. Can you bring a hired cleaner during your visit to help deep clean?
And to be really up-front - where is the money coming from? Are you paying money towards this? Who is getting the house? Who will pay for your parents' caregivers when they get to that stage? When your parents are gone, what's their plan for your brother - he gets the house because he needs it while your parents assume you are fine? Are you going to do that practical stuff or are you lucky enough to be able to say it's not worth it and refuse to get involved?
You can't fix that level of emotional mess without most of the people involved ready and able. Focus on the practical and get yourself back into therapy or in contact with friends in similar situations to vent - somewhere you can deal with the emotional pain of having to be a bystander to a family disaster.
I am so sorry - you are in an awful awful situation and it is very painful. Please be kind to yourself.
posted by dorothyisunderwood at 8:40 PM on December 20, 2023
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