In August of 2023, my 73-year-old mother was diagnosed with stage 4 colorectal cancer. At pretty much the same time, she suffered what seemed to be a super fast (i.e. weeks-to-months) slide into pretty advanced dementia. (I now realise there were signs of the slide earlier in the year and maybe even before that I didn’t fully recognise. However, these would be tempered with interactions where she seemed quite reasonable and “with it”, if a bit difficult.)
With everything that was going on (more on which below), in October, I made the decision to move her to the dementia wing of a frail care centre near her old home. I live 3.5 hours away from her by car and am an only child, with a 2 year old of my own. (There are no chemo or radiation facilities nearby where I live as it’s very rural, hence a frailcare centre closer to where I live simply wasn’t an option and my mom definitely wanted treatment.)
My mom has almost no one else besides me - no husband (long divorced), no friends to speak of, no other relatives in the country. (Just a very caring former neighbour.) The two weeks prior to moving her, I had tried out 24-hour homecare, but this was a total disaster. From complaining about the carers eating her food (they would also prepare all her meals), to saying they were stealing, then removing their bedding, locking them out of their rooms, calling the police on one in the middle of the night to get her removed, to then locking them both out of the house totally, it just wasn’t tenable. (She also managed to somehow get hold of an entire bottle of sedatives under their care - pills that had been prescribed by her homecare doctor to help with sundowning and pacing throughout the night - and took half them, sleeping for pretty much 48 hours straight to my horror - and then recalling none of it.)
Anyway, after kicking out the home carers, she began to hallucinate badly, saying she had seen me in the driveway that morning (I was not there), that I had slept in my childhood bed the prior night (again, I was nowhere near), that the carers were back in the house, and that one of the carers was sleeping in my old bedroom with the homecare doctor. She was very emotional, lonely and afraid. Among other things, she also insisted on using candles instead of lamps at night and could no longer manage going to the toilet alone to the point where it was becoming a health hazard. Regardless, she remained quite verbal and insistent that she was fine on her own (on some days - on others, she had very few words left.) Despite my pleading, she wouldn’t go voluntarily to the care home. So, with the help of the homecare nursing association, she was moved via ambulance to the care centre about 48 hours after the end of the homecare situation.
Now, about 6 months in, she remains unhappy about being in frailcare. She keeps saying “I will get out of here soon.” For a week or two after admission, she believed she was back at the office of her youth and would talk about the people she was “working with” there. Even now, she doesn’t quite understand (or accept) where she is despite many people, including the resident social worker, trying to explain it. She has spoken of cults, “followers” (they had some recent Easter celebrations) and rampant theft of her belongings, although I know this last one is common in dementia patients. For a time she was fixated on getting access to money, although she could no longer articulate how she would use any amount, even small, if it was given to her. (Eventually, I sent her an expired credit card.) Recently, she seems to have forgotten how to use her cellphone, as she never answers anymore - I call her via the main phone lines. She also straight up refuses to bathe or be showered, then screams when they bathe her, then looks at the age spots on her arms and says they are bruises from being held and tells me how terrible the place is. She also has found a boyfriend of sorts, who she claims is very lazy, as everyone else there works, apparently, except him. (Even though he's led her to believe that he owns the entire retirement village!)
I’ve found immense support on this forum, including reading about how drastically dementia can change people, making them unrecognisable to friends and family. But I feel that my mother’s dementia has merely brought out traits that were always there - suspicion, anxiety and to be honest a kind of hatred of others. I find myself not wanting to be in touch with her. And to think, there was a time when I was growing up that she and I were very close, and I regarded her as a great mom, which she was, in many ways, albeit reclusive and isolated, even then.
If I have a pleasant conversation with her these days, it is because I am doing all the things the experts advise you to - agreeing, empathising, not contradicting, not advising. But sometimes, I can’t help but just tell her (calmly, very calmly) that, for example, if she simply bathes on her own accord every day, she needn’t endure the “gorillas” coming to wash her (her words). If I do this, she says it’s no one’s business how often she bathes and then the insults toward me begin.
I would love to have a better, more connected relationship with my mother as I know she won’t be around for very much longer. (Her cancer treatment is palliative only - plus the dementia seems to be moving fast; she has a MOCA score of 10/30.) But I can’t help but feel I am dealing with a selfish and standoffish person made only more so by her illness (not transformed by it).
The doctor recently decided to put her on an SSRI to help her moods and perhaps make her more willing to do things like bathe (she already takes a Quetiapine-based anti-psychotic). It’s fairly apparent that she’s struggled with an anxiety disorder for years, even prior to all of this, so I hope the drugs help. (I also suspect that a lifetime of worry and social isolation likely played a big hand in her development of dementia, which does not run in the family.)
At any rate, I don’t know what to feel or do anymore. Do I just disengage, emotionally, and stop trying? Or is there a way I can connect with her, in some way, however slight?
With everything that was going on (more on which below), in October, I made the decision to move her to the dementia wing of a frail care centre near her old home. I live 3.5 hours away from her by car and am an only child, with a 2 year old of my own. (There are no chemo or radiation facilities nearby where I live as it’s very rural, hence a frailcare centre closer to where I live simply wasn’t an option and my mom definitely wanted treatment.)
My mom has almost no one else besides me - no husband (long divorced), no friends to speak of, no other relatives in the country. (Just a very caring former neighbour.) The two weeks prior to moving her, I had tried out 24-hour homecare, but this was a total disaster. From complaining about the carers eating her food (they would also prepare all her meals), to saying they were stealing, then removing their bedding, locking them out of their rooms, calling the police on one in the middle of the night to get her removed, to then locking them both out of the house totally, it just wasn’t tenable. (She also managed to somehow get hold of an entire bottle of sedatives under their care - pills that had been prescribed by her homecare doctor to help with sundowning and pacing throughout the night - and took half them, sleeping for pretty much 48 hours straight to my horror - and then recalling none of it.)
Anyway, after kicking out the home carers, she began to hallucinate badly, saying she had seen me in the driveway that morning (I was not there), that I had slept in my childhood bed the prior night (again, I was nowhere near), that the carers were back in the house, and that one of the carers was sleeping in my old bedroom with the homecare doctor. She was very emotional, lonely and afraid. Among other things, she also insisted on using candles instead of lamps at night and could no longer manage going to the toilet alone to the point where it was becoming a health hazard. Regardless, she remained quite verbal and insistent that she was fine on her own (on some days - on others, she had very few words left.) Despite my pleading, she wouldn’t go voluntarily to the care home. So, with the help of the homecare nursing association, she was moved via ambulance to the care centre about 48 hours after the end of the homecare situation.
Now, about 6 months in, she remains unhappy about being in frailcare. She keeps saying “I will get out of here soon.” For a week or two after admission, she believed she was back at the office of her youth and would talk about the people she was “working with” there. Even now, she doesn’t quite understand (or accept) where she is despite many people, including the resident social worker, trying to explain it. She has spoken of cults, “followers” (they had some recent Easter celebrations) and rampant theft of her belongings, although I know this last one is common in dementia patients. For a time she was fixated on getting access to money, although she could no longer articulate how she would use any amount, even small, if it was given to her. (Eventually, I sent her an expired credit card.) Recently, she seems to have forgotten how to use her cellphone, as she never answers anymore - I call her via the main phone lines. She also straight up refuses to bathe or be showered, then screams when they bathe her, then looks at the age spots on her arms and says they are bruises from being held and tells me how terrible the place is. She also has found a boyfriend of sorts, who she claims is very lazy, as everyone else there works, apparently, except him. (Even though he's led her to believe that he owns the entire retirement village!)
I’ve found immense support on this forum, including reading about how drastically dementia can change people, making them unrecognisable to friends and family. But I feel that my mother’s dementia has merely brought out traits that were always there - suspicion, anxiety and to be honest a kind of hatred of others. I find myself not wanting to be in touch with her. And to think, there was a time when I was growing up that she and I were very close, and I regarded her as a great mom, which she was, in many ways, albeit reclusive and isolated, even then.
If I have a pleasant conversation with her these days, it is because I am doing all the things the experts advise you to - agreeing, empathising, not contradicting, not advising. But sometimes, I can’t help but just tell her (calmly, very calmly) that, for example, if she simply bathes on her own accord every day, she needn’t endure the “gorillas” coming to wash her (her words). If I do this, she says it’s no one’s business how often she bathes and then the insults toward me begin.
I would love to have a better, more connected relationship with my mother as I know she won’t be around for very much longer. (Her cancer treatment is palliative only - plus the dementia seems to be moving fast; she has a MOCA score of 10/30.) But I can’t help but feel I am dealing with a selfish and standoffish person made only more so by her illness (not transformed by it).
The doctor recently decided to put her on an SSRI to help her moods and perhaps make her more willing to do things like bathe (she already takes a Quetiapine-based anti-psychotic). It’s fairly apparent that she’s struggled with an anxiety disorder for years, even prior to all of this, so I hope the drugs help. (I also suspect that a lifetime of worry and social isolation likely played a big hand in her development of dementia, which does not run in the family.)
At any rate, I don’t know what to feel or do anymore. Do I just disengage, emotionally, and stop trying? Or is there a way I can connect with her, in some way, however slight?
