Hi, I'm back after an introductory post a bit of a while back. I was really depressed at the time and shrank away from communicating so I never did the follow up post. There is going to be a bit of ramble while I lay the groundwork, because the current situation is extremely influenced by the background, I hope this will become clear as I go. Sorry for making anyone read a bunch of this before getting to the point. Please excuse if my words are obsessively overdetailed or irrelevant, I have a weird condition where I think people don't understand or believe me so I have difficulty being succint. Also I make no apologies for this being partly a therepeutic exercise.
I just turned 50 (blah), single and I live with my parents, my dad is 89 and has Alzheimers. He got married and had kids much later than was common for his generation and there is a huge age gap between him and mum. I haven't worked (outside home) in a long time, but I have been essentially the handyman/carer/dogsbody of the house for the last 15 years or so, to the point where codependence has become a real issue I wish I had seen coming a lot earlier. I previously moved out and lived away from the family after university which ended in unmitigated disaster that I was lucky to survive. I have been officially at Death's Door twice but pulled through, and not long ago I was given until 55 but luckily several factors have moved in my favour since, although it's unlikely I'll be a long stayer based purely on accumulated damage and the sheer volume of medication I'm on. Dad, on the other hand, is an ox - he has never had a sick day in his life and I honestly cannot remember him ever being ill. It's a miserably ambivalent feeling that he might actually stick around longer than me, not only might I not be around to look out for him, I'll never be free of him either.
Part 2 - On Being Broken
I will try to keep the next bit brief because frankly its a novel sized mess - I have Crohn's disease, but I also have every non fatal complication its possible for Crohn's sufferers to have, even the extremely rare ones, as well as permanent complications from multiple surgeries. This has left me effectively disabled (but mobile), unable to be particularly active outside the home and as I already suffered from social anxiety I have become a virtual recluse, especially after the lockdown. I also have quite recently discovered that I suffer from crippling ADHD (and have done all my life, although it was always diagnosed as 'Being Lazy and Unwilling to Behave'), which certainly answers a lot of questions but doesn't provide any immediate solutions. The waiting list for an official diagnosis and medication some of you may be aware is unbelievably long and I have had previous referrals rejected on the basis that it wasn't a 'significant handicap' because I don't have a job, kids or marriage to protect. A real ego booster that.
Part 3, It Gets Worse
My older brother suffered a brain injury as a baby, which has left him with moderate learning disability, extreme personality and behaviour issues and epilepsy. In a way, you could describe it as similar to middle stage dementia with extra aggression but with the physical strength and memory skills to make damn sure you never forget that he gets what he wants. A giant toddler, if you will. All three of us have had our patience, tolerance and energy worn down to a stump by 50 years of (what i now realise is) emotional and physical abuse and the endlessly repeating cycle of 'well he cant help it' and 'keep him happy or else'. Whether consciously or not, he's always managed to keep his actions just below what would be broadly considered enough to actually cut ties with him or lock him up, just enough to be incredibly irritating and exhausting, and to give me a lifelong inferiority complex because he got 90% of the attention when we were small and demands all the attention now he's big. He is in residential care but he visits us on alternate weekends because my parents are deeply attached to the idea that any rejection of him would make them bad parents and bad people, and concomitantly that he is totally incapable of independence without our constant intervention.
My medical condition has only grown worse over time, I have accumulated damage all over the place and I am largely in constant moderate pain, I have had diarrhea for 29 uninterrupted years, I've given up all the food and drink I enjoy but am still obese and constantly exhausted because my metabolism is broken. And into my life strolls Dr Alois Alzheimer.
Part 4: The Point
The point of all this is that I DO NOT HAVE THICK SKIN. Dad is slowly turned from a close friend, an intelligent, sensible and helpful person to a selfish, childish, spiteful brat. The memory loss is troubling, but its nothing compared to his obsessive and defiant behaviour and short temper. If it didn't seem extremely unlikely, I would think he is unconsciously copying the bad behaviour my brother has exhibited his whole life as some sort of strange revenge for putting up with it. I realise its not really that different from standard dementia symptoms but damn if it isn't depressingly familiar. Strangely enough he also seems to always stop just short of doing anything thats immediately life threatening or dangerous, but just enough to be really REALLY annoying - piles of rotten wood in the garden, pulling the shoots off my growing plants, throwing out any piece of paper that isnt nailed down (including a file of my financial and medical papers which went in the wheelie bin for the world to enjoy, right before the binmen came so I couldn't retrieve them), drinking more than he should and lying about it, taking the dog out in the pouring rain and coming back with muddy trousers and shoes but refusing to change out of them and tracking mud all over the house, refusing to finish his food then having three desserts, taking a drink cup to wash it when its still a third full and yelling at you for not finishing it faster, walking on flowerbeds with new seedlings, constantly yelling criticism at the driver if he's a passenger in a car, literally doing the opposite of what you ask him to even if it costs him (asking him not to tread on the plants may result in him going straight out there and standing on them and making sure you see him do it) - it truly does start to feel like he's just being a bully.
I have spent most of my life dealing with debilitating depression and anxiety, and problems resulting from neurodivergent traits about which I was never believed (mum still doesnt believe these things even exist let alone that I could be suffering from them). My entire childhood was spent terrified of and for my brother, not only constantly being reminded that I was both less important than him and had to succeed for two to make up for him, but that any problems I may have had were so much less than his that they were irrelevant. I also note as an aside that I had the bonus misfortune of being the only brown kid at two primary schools and secondary school, I was bullied and racially abused throughout my childhood, on top of being unusually short and having the 'crazy' brother. As it is I feel like a complete failure in every walk of life and that I have been doing nothing but disintegrate physically and mentally for years. Medical science has helpfully informed me that they are essentially out of treatment ideas and their advice is just try and live with it.
Part 5: Then Why Am I Still Here
This is where it gets very sticky indeed. I need, get, and appreciate help from my family, and they from me. Life is hard for me and they have certainly removed some things that would have made it much much harder. I am frankly terrified of trying to live by myself, both because of conditioning and the certain knowledge that I would not be able to cope. I realise this is a risky thing to get into because rightly it causes considerable concern so I will preface by saying that I have no plans to harm myself because I just have too much **** to do. That said, I have been barely hanging on the last few years, and I pretty much have to keep referring to checklist of reasons to still be here. If I added a ton of extra stress and responsibilities on top of constant loneliness I can only see that list getting shorter. The other major problem is that both of my parents have made it pretty clear to me that they would consider me leaving a gigantic personal betrayal, and without actually being monsters about it, I have been reminded who fed and clothed me and paid the bills all these years, and how family is about always helping each other no matter the cost. They have also made a habit of regularly telling me I am 'indispensible' and they 'couldnt cope' without me, which only with time and hindsight I realise is (largely) unintentional manipulation.
I cannot escape the all consuming feeling that if something happens to dad that I could have prevented, I will both feel and be held responsible. Due to a stroke of luck he stopped driving before I had to forcibly stop him which I was dreading, but right now he is walking a fine line of what is safe. He used to drink one small glass of red wine a day on his doctors advice, for 'health reasons' but lately he has begun drinking almost obsessively, despite having never been a heavy drinker his whole life. He has told me he can't remember ever having been drunk, but now he drinks like an alcoholic, topping up his glass when no one is looking, (figuratively) ransacking the house for booze if he runs out, and drinking things he actually hates like whiskey and brandy. If asked about this he immediately lies and becomes angry and defensive, even if you don't phrase it critically (How was that new wine? Is the wine finished? Want me to wash your glass?), and the sneaking and attempting to disguise his drinking seems like it must be the result of knowing he shouldn't. As he both has dementia and is on medication for it, I feel like he really shouldnt be drinking at all, but at what point does his right to destroy himself become subordinate to my responsibility to protect him? We have tapered off the amount of alcohol in the house with a view to having none at all but I fear this will result in not just anger and accusations but that this will be a repeating loop as he discovers each day that there's no alcohol and gets angry all over again. Not to mention that I worry he will actually start REALLY ransacking the house and potentially doing damage, injuring himself or messing with my irreplaceable valuables.
He still walks the dog and every day a little voice whispers in my ear this is the day he gets lost and falls in a ditch, and perhaps anticipating something he regularly and vehemently reminds me that walking the dog is his only pleasure in life and he never wants it taken away from him. He insists on collecting 'firewood' every single time he leaves the house, despite the fact that we have perhaps five fires a year and we already have a woodpile that will last us years, and he only seems to collect HUGE pieces rotten stinking slimy wood which he can barely drag and piles in the garden into giant unnerving stacks blocking access to parts of the garden, as well as huge piles of what is probably tens of thousands of pine cones that he defends like its gold. For some reason his memory is good enough to remember what he's accumulated and he spots immediately if we move any of it, he has forced his way deep into the hedge to retrieve some wood we hid there and got badly cut, and he also has the distressing habit now of ignoring injuries completely, even if blood is dripping off him, and getting angry if you try to treat or dress them. Again much like my brother he seems to have a highly acute sense of other people being distressed, and reacts by trying to amplify the distress, I imagine this is something to do with brain wiring responding to stress with anger and defensiveness instead of compassion but its REALLY hard not to take it as them just trying to hurt you as much as possible. As I have said a lot lately, knowing the name of the demon doesn't necessarily give you control of it.
Another problem, because it never ends, is that Mum is basically pathologically critical. She CANNOT lose an argument, or be proved wrong, or not say out loud if she thinks someone else is wrong. I love my mum and she's not a monster, but good grief is it hard to get her to not express a critical thought. Even IMMEDIATELY after discussing how she shouldnt constantly correct and tell off dad for thinks he forgets, the next sentence out her mouth has been criticising him on multiple occasions. She has made it abundantly clear that she will absolutely not place him in care or bring in professional help unless the need is desperate and existential. She is not unconsciously trying to drive him away as one might think, its just that she is consumed by the need for everyone around her to do what she thinks they should. I have taken to leaving a room if both of them are in it because an argument is practically guaranteed, and we have discussed this HUNDREDS of times and she is even currently attending seminars on dementia care that reinforce that what she is doing is not what she should be doing. It is maddening because life is hard enough. I fear that leaving them alone together without me as a buffer could be very ugly indeed.
Part 6: The Question
We have communicated with NHS resources on Dad's diagnosis of course, MRI scans and interviews resulted in Alzheimer's being officially confirmed and Donepezil being prescribed. Mum has been attending care advice seminars and so on, but it does feel like there is a big wall in front of us. Asking about more interventional care returns the question 'Is x actually life threatening to him or others?', otherwise you're on your own more or less. Of course Dad is lucky in that he does have largely able bodied family members to help and that we are willing to and not scumbags who will abuse or exploit him, but I have been dangling on the bottom rung of my emotional ladder for quite some time now and I don't think I have the stamina. It's not that it's hard work, or that I can't understand and sympathise, its the abuse. I have a very VERY low tolerance for rejection, accusations and raised voices, I have seen how people can get with this disease and I'm terrified he's going to break me and I won't be able to pull out of the tailspin. I truly, genuinely have NO idea what to do.
I just turned 50 (blah), single and I live with my parents, my dad is 89 and has Alzheimers. He got married and had kids much later than was common for his generation and there is a huge age gap between him and mum. I haven't worked (outside home) in a long time, but I have been essentially the handyman/carer/dogsbody of the house for the last 15 years or so, to the point where codependence has become a real issue I wish I had seen coming a lot earlier. I previously moved out and lived away from the family after university which ended in unmitigated disaster that I was lucky to survive. I have been officially at Death's Door twice but pulled through, and not long ago I was given until 55 but luckily several factors have moved in my favour since, although it's unlikely I'll be a long stayer based purely on accumulated damage and the sheer volume of medication I'm on. Dad, on the other hand, is an ox - he has never had a sick day in his life and I honestly cannot remember him ever being ill. It's a miserably ambivalent feeling that he might actually stick around longer than me, not only might I not be around to look out for him, I'll never be free of him either.
Part 2 - On Being Broken
I will try to keep the next bit brief because frankly its a novel sized mess - I have Crohn's disease, but I also have every non fatal complication its possible for Crohn's sufferers to have, even the extremely rare ones, as well as permanent complications from multiple surgeries. This has left me effectively disabled (but mobile), unable to be particularly active outside the home and as I already suffered from social anxiety I have become a virtual recluse, especially after the lockdown. I also have quite recently discovered that I suffer from crippling ADHD (and have done all my life, although it was always diagnosed as 'Being Lazy and Unwilling to Behave'), which certainly answers a lot of questions but doesn't provide any immediate solutions. The waiting list for an official diagnosis and medication some of you may be aware is unbelievably long and I have had previous referrals rejected on the basis that it wasn't a 'significant handicap' because I don't have a job, kids or marriage to protect. A real ego booster that.
Part 3, It Gets Worse
My older brother suffered a brain injury as a baby, which has left him with moderate learning disability, extreme personality and behaviour issues and epilepsy. In a way, you could describe it as similar to middle stage dementia with extra aggression but with the physical strength and memory skills to make damn sure you never forget that he gets what he wants. A giant toddler, if you will. All three of us have had our patience, tolerance and energy worn down to a stump by 50 years of (what i now realise is) emotional and physical abuse and the endlessly repeating cycle of 'well he cant help it' and 'keep him happy or else'. Whether consciously or not, he's always managed to keep his actions just below what would be broadly considered enough to actually cut ties with him or lock him up, just enough to be incredibly irritating and exhausting, and to give me a lifelong inferiority complex because he got 90% of the attention when we were small and demands all the attention now he's big. He is in residential care but he visits us on alternate weekends because my parents are deeply attached to the idea that any rejection of him would make them bad parents and bad people, and concomitantly that he is totally incapable of independence without our constant intervention.
My medical condition has only grown worse over time, I have accumulated damage all over the place and I am largely in constant moderate pain, I have had diarrhea for 29 uninterrupted years, I've given up all the food and drink I enjoy but am still obese and constantly exhausted because my metabolism is broken. And into my life strolls Dr Alois Alzheimer.
Part 4: The Point
The point of all this is that I DO NOT HAVE THICK SKIN. Dad is slowly turned from a close friend, an intelligent, sensible and helpful person to a selfish, childish, spiteful brat. The memory loss is troubling, but its nothing compared to his obsessive and defiant behaviour and short temper. If it didn't seem extremely unlikely, I would think he is unconsciously copying the bad behaviour my brother has exhibited his whole life as some sort of strange revenge for putting up with it. I realise its not really that different from standard dementia symptoms but damn if it isn't depressingly familiar. Strangely enough he also seems to always stop just short of doing anything thats immediately life threatening or dangerous, but just enough to be really REALLY annoying - piles of rotten wood in the garden, pulling the shoots off my growing plants, throwing out any piece of paper that isnt nailed down (including a file of my financial and medical papers which went in the wheelie bin for the world to enjoy, right before the binmen came so I couldn't retrieve them), drinking more than he should and lying about it, taking the dog out in the pouring rain and coming back with muddy trousers and shoes but refusing to change out of them and tracking mud all over the house, refusing to finish his food then having three desserts, taking a drink cup to wash it when its still a third full and yelling at you for not finishing it faster, walking on flowerbeds with new seedlings, constantly yelling criticism at the driver if he's a passenger in a car, literally doing the opposite of what you ask him to even if it costs him (asking him not to tread on the plants may result in him going straight out there and standing on them and making sure you see him do it) - it truly does start to feel like he's just being a bully.
I have spent most of my life dealing with debilitating depression and anxiety, and problems resulting from neurodivergent traits about which I was never believed (mum still doesnt believe these things even exist let alone that I could be suffering from them). My entire childhood was spent terrified of and for my brother, not only constantly being reminded that I was both less important than him and had to succeed for two to make up for him, but that any problems I may have had were so much less than his that they were irrelevant. I also note as an aside that I had the bonus misfortune of being the only brown kid at two primary schools and secondary school, I was bullied and racially abused throughout my childhood, on top of being unusually short and having the 'crazy' brother. As it is I feel like a complete failure in every walk of life and that I have been doing nothing but disintegrate physically and mentally for years. Medical science has helpfully informed me that they are essentially out of treatment ideas and their advice is just try and live with it.
Part 5: Then Why Am I Still Here
This is where it gets very sticky indeed. I need, get, and appreciate help from my family, and they from me. Life is hard for me and they have certainly removed some things that would have made it much much harder. I am frankly terrified of trying to live by myself, both because of conditioning and the certain knowledge that I would not be able to cope. I realise this is a risky thing to get into because rightly it causes considerable concern so I will preface by saying that I have no plans to harm myself because I just have too much **** to do. That said, I have been barely hanging on the last few years, and I pretty much have to keep referring to checklist of reasons to still be here. If I added a ton of extra stress and responsibilities on top of constant loneliness I can only see that list getting shorter. The other major problem is that both of my parents have made it pretty clear to me that they would consider me leaving a gigantic personal betrayal, and without actually being monsters about it, I have been reminded who fed and clothed me and paid the bills all these years, and how family is about always helping each other no matter the cost. They have also made a habit of regularly telling me I am 'indispensible' and they 'couldnt cope' without me, which only with time and hindsight I realise is (largely) unintentional manipulation.
I cannot escape the all consuming feeling that if something happens to dad that I could have prevented, I will both feel and be held responsible. Due to a stroke of luck he stopped driving before I had to forcibly stop him which I was dreading, but right now he is walking a fine line of what is safe. He used to drink one small glass of red wine a day on his doctors advice, for 'health reasons' but lately he has begun drinking almost obsessively, despite having never been a heavy drinker his whole life. He has told me he can't remember ever having been drunk, but now he drinks like an alcoholic, topping up his glass when no one is looking, (figuratively) ransacking the house for booze if he runs out, and drinking things he actually hates like whiskey and brandy. If asked about this he immediately lies and becomes angry and defensive, even if you don't phrase it critically (How was that new wine? Is the wine finished? Want me to wash your glass?), and the sneaking and attempting to disguise his drinking seems like it must be the result of knowing he shouldn't. As he both has dementia and is on medication for it, I feel like he really shouldnt be drinking at all, but at what point does his right to destroy himself become subordinate to my responsibility to protect him? We have tapered off the amount of alcohol in the house with a view to having none at all but I fear this will result in not just anger and accusations but that this will be a repeating loop as he discovers each day that there's no alcohol and gets angry all over again. Not to mention that I worry he will actually start REALLY ransacking the house and potentially doing damage, injuring himself or messing with my irreplaceable valuables.
He still walks the dog and every day a little voice whispers in my ear this is the day he gets lost and falls in a ditch, and perhaps anticipating something he regularly and vehemently reminds me that walking the dog is his only pleasure in life and he never wants it taken away from him. He insists on collecting 'firewood' every single time he leaves the house, despite the fact that we have perhaps five fires a year and we already have a woodpile that will last us years, and he only seems to collect HUGE pieces rotten stinking slimy wood which he can barely drag and piles in the garden into giant unnerving stacks blocking access to parts of the garden, as well as huge piles of what is probably tens of thousands of pine cones that he defends like its gold. For some reason his memory is good enough to remember what he's accumulated and he spots immediately if we move any of it, he has forced his way deep into the hedge to retrieve some wood we hid there and got badly cut, and he also has the distressing habit now of ignoring injuries completely, even if blood is dripping off him, and getting angry if you try to treat or dress them. Again much like my brother he seems to have a highly acute sense of other people being distressed, and reacts by trying to amplify the distress, I imagine this is something to do with brain wiring responding to stress with anger and defensiveness instead of compassion but its REALLY hard not to take it as them just trying to hurt you as much as possible. As I have said a lot lately, knowing the name of the demon doesn't necessarily give you control of it.
Another problem, because it never ends, is that Mum is basically pathologically critical. She CANNOT lose an argument, or be proved wrong, or not say out loud if she thinks someone else is wrong. I love my mum and she's not a monster, but good grief is it hard to get her to not express a critical thought. Even IMMEDIATELY after discussing how she shouldnt constantly correct and tell off dad for thinks he forgets, the next sentence out her mouth has been criticising him on multiple occasions. She has made it abundantly clear that she will absolutely not place him in care or bring in professional help unless the need is desperate and existential. She is not unconsciously trying to drive him away as one might think, its just that she is consumed by the need for everyone around her to do what she thinks they should. I have taken to leaving a room if both of them are in it because an argument is practically guaranteed, and we have discussed this HUNDREDS of times and she is even currently attending seminars on dementia care that reinforce that what she is doing is not what she should be doing. It is maddening because life is hard enough. I fear that leaving them alone together without me as a buffer could be very ugly indeed.
Part 6: The Question
We have communicated with NHS resources on Dad's diagnosis of course, MRI scans and interviews resulted in Alzheimer's being officially confirmed and Donepezil being prescribed. Mum has been attending care advice seminars and so on, but it does feel like there is a big wall in front of us. Asking about more interventional care returns the question 'Is x actually life threatening to him or others?', otherwise you're on your own more or less. Of course Dad is lucky in that he does have largely able bodied family members to help and that we are willing to and not scumbags who will abuse or exploit him, but I have been dangling on the bottom rung of my emotional ladder for quite some time now and I don't think I have the stamina. It's not that it's hard work, or that I can't understand and sympathise, its the abuse. I have a very VERY low tolerance for rejection, accusations and raised voices, I have seen how people can get with this disease and I'm terrified he's going to break me and I won't be able to pull out of the tailspin. I truly, genuinely have NO idea what to do.
