Hi everyone (apologies for the length of this post),
I'm 57 years old, live in the UK and my parents live in North America. Over the last 5-10 years my mother has been showing signs of Dementia. It has been incredibly challenging to manage and oversee this problem from afar. She is not one to go to doctors voluntarily (she's 82) but I did manage to get her a GP appointment 4 years ago-which she agreed to go to (under the pretence of checking her blood pressure) etc. The doctor assessed her mind (I believe via a mini mental state exam)-and she passed-so there was no referral to a neurologist made. I was fuming.
Two years ago (2022), we tried again-and this time the GP did agree that things are not all right-and my mum was referred to the neurology department (it's the geriatric clinic/memory clinic) in their city.
She was diagnosed with Mild Cognitive Impairment (MCI) based on the fact that she can still carry out her day to day tasks independently. My father (narcissistic traits) accompanied her to her appointment and when he shared with me the diagnosis, again, I was fuming. "Are you kidding me"? were my exact words. I believe 100% that the fact that my father lives with my mother, and does the food shopping, etc. is masking the severity of the illness. We had countless examples of her confusion, forgetfulness, etc.
Fast forward to 2024 and there has been marked deterioration: she does have moments of lucidity where she remembers what I said 10 mins. ago-but 99% of the time she will not remember a) if she took a shower earlier in the day b) if she has eaten b) what I or anyone else said 10 mins. ago, etc. She has many of the symptoms listed for vascular dementia, though I don't know if that is the kind of dementia she has-her mother had Alzheimer's Disease. When my mother was assessed at the memory clinic-she was offered a brain scan but declined. And so we really don't know which type of Dementia we are dealing with.
It's important to mention that my mother *can* still carry out tasks like make her own breakfast, drive-she drives herself to her hair appointment every Saturday. She knows her way around her local area. This independence is important to her. She is a very proud woman and therefore does not admit to anyone that she is forgetting or gets confused from time to time. She *will* say to me every now and again "I'm losing my mind" "I can't remember anything", etc. But if I would ever then follow that up with "why don't you make an appointment to see that nice doctor at the memory clinic"? she will say "I'm fine".
However, for me, the biggest challenge is dealing with my father-he is 84, he still works (his choice) though he tells me he "has to". I don't believe he has to-I believe he chooses to, in order to spend as little time at home. He simply cannot deal with my mother's forgetfulness and confusion. He shouts at her for forgetting, he says "I told you that....."-all the things the literature say not to say to someone with dementia-he does. And so she ends up feeling **** about herself. He shames her and it is awful to watch. I am constantly "at" him for doing so, which is not helping *our* relationship.
My mother spends all day at home on her own with no mental stimulation. She has 2 nieces in town who could visit her, but don't. Only one of them phones her/Facetimes her. We, as a family really have little support. She is not a "groups" person and despite my suggestions of joining a group/meeting other ladies-she has no interest. She lost her 4 closest friends over the last 20 years. She really has nobody to talk to, other than my father who is at work 9-6PM (though he phones her throughout the day to check in on her).
My mother has two sisters-one lives in the same city as them and one does not. Neither of them have offered to help, despite the fact that they know what is going on-(and they are both younger and both in better health).
Granted, I believe my father is partly to blame for this because I believe he plays down the severity of my mother's decline-to me, and to others. When she visits me, I am constantly on the phone to him, updating him on the latest "she didn't remember that she hasn't had a shower" as an example. He never updates me on how she is and so when I see her after several months....I am always taken aback at the newest/latest examples of decline.
I don't think he is in denial per-se-he knows exactly what is going on because I talk to him about it frequently (especially after she visits me in the UK)-I believe he just can't handle it, and it's primarily because he is embarrassed and ashamed. He is a true narcissist-my mother has mobility issues and he just cannot walk beside her when we hire a wheelchair or mobility scooter to go out and about-he is embarrassed to be seen with her. It's quite clear and obvious that this is what is going on. He genuinely does not have an ounce of empathy in him where my mother is concerned. The dynamic between them is not and has never been that healthy.
Interestingly, when my mother was here visiting me, my father was out socialising with friends 15/17 evenings. He also visited one of his friends who lives in a care home-he spent 2 hours there. However, when it comes to my mother-he avoids spending time with her at all costs.
She was just here for over 2 weeks and the decline, from Christmas, when I last saw them was apparent. There are incontinence issues I was not fully aware of before this visit, etc. He never shares any of this with me-either because he doesn't want to admit what is happening or because he is oblivious to it because he's out all day long. I honestly don't know which it is but I'm sick and tired of him turning a blind eye and prioritising his work over my mother.
As a result of what is happening to my mother, my relationship with my father is suffering-because after each visit (after my mother leaves me) I am made more aware of her decline....and I get on the phone to him and tell him that he needs to spend more time with her. I express my anger and disappointment in him for not spending more time with her. She doesn't always remember to eat between breakfast and dinner-and she is diabetic. This is a concern to me.
My father recently started crying on the phone to me (in response to me shouting at him)-no, I'm not proud for shouting, but I *am* frustrated...and he said "I don't know what to do".
A couple of years ago I suggested that he go to a support group for carers of dementia patients-he said "I don't need this/I'm not ready for that". I believe this would be a game changer for him in that at the moment I am the only person who holds him accountable. If he were to attend a support group a) he would receive support and b) he would also be encouraged and taught how to best help my mother. He really has no clue how to speak to her in a respectful way-he never did. He was spoiled by his own mother and grew up thinking he is god's gift. And in true narcisstic fashion-everyone in his circle thinks he is wonderful (or at least they respond to him as if they do). He can never do any wrong-and so nobody else is holding him accountable for caring for my mother. As a result, I'm the baddie.
A lot of people feel sorry for my father, but a) he is not the angel everyone else thinks he is and b) this is about my mother-it is not about my father...or about me. My primary concern is my mother.
What he does do for her is he will take her to any appointments she has if parking will be difficult (she has reduced mobility) and he takes her for dinner most evenings-she doesn't cook-never did! But as for 9-6PM-she is totally on her own .
As her only daughter and only child....I know that my father could do more for her, like take her for lunch during the day, from time to time-and though I've suggested it many times-he will just say "ya ya" and then never follow suit.
My mother would *not* want somebody (a carer) to come into their house to ensure she is eating. She would hate this. Even after her bilateral hip operation a few years ago, she hated having the carer there for 2-3 weeks....my mother is not a people person. Her standard reply is always "I'm fine". I don't think she realises how severe her cognitive decline is. And if she does realise-she is too proud and embareassed to ask for help.
Another warning sign to me that all is not right is that she is not taking two of her medications at the appropriate times (as per instructions written on the bottles). And so I managed to get her a GP appointment for July....again, under the pretence of having a BP check....and my plan is to fly home (7 hours) to accompany her to this appointment...however I am mindful that my mother *can* still make her own decisions and if I say "mum, can I come with you to the doctor"? If she says "no" I will have flown home for nothing. I say nothing-I know that I can still enjoy my time with her-but I've just spent 2 1/2 weeks with her and was not planning on taking more time off in July-I run my own psychotherapy practice. The flight is costly, and the jetlag is awful...I wasn't planning on taking time off work in July. However, I *would* want to be at the appointment with her-if she is happy for me to be. And no, I can't ask her *now* if she'd like me to be there with her because even if she says "yes" today, and I book my flight for July...she *may* still change her mind and on the day say "no, I want to go alone". It's a tricky one. As I said, I can only take so much time off in a year and I was not planning on taking time off in July. If it was *necessary* (i.e., there was an emergency) of course I would drop everything to fly home...but this is about accompanying her to a GP appointment that she may not want me at.
I have already drafter a letter to the GP which I plan on posting to him ahead of the July appointment, highlighting all of my concerns. It's a 6 page letter despite the fact that the receptionist told me to make to brief. How can I make this brief? There is so much to say!
My father and I both agree on one thing: that my mother's GP (who used to be my GP before I moved to the UK) is very blasé, relaxed, etc. And the way things work where they live is-they do not invite patients in for reviews..they wait for the patient to phone them. I have had arguments with the reception team "how do you expect a patient with dementia to phone you and arrange an appointment-it's unrealistic". Which prompts them to make the appointment for her under the pretence of having her BP checked. You literally have to phone them and beg them to invite the patient in. It's ridiculous. A dementia patient cannot be expected to phone the doctor to make their own appointment.
The above is really just context/background....my main questions/concerns are:
1) Am I supposed to give up/close my practice/business and move back home to where my parents live to ensure my mother eats during the day?
2) How do I get my father to take things more seriously and spend more time with her?
3) I would love my mother to spend more time with me in the UK-she enjoys herself here but she does miss my father (despite the fact that he is not home Mon-Friday daytime). I do care for her better than he does and I also believe that if she were with me for longer periods, I might be able to sway her to get a brain scan done here (I'd pay privately). I love having her here with me and though this is not about me, I actually sleep better when she is here-as stressful as it can be to look after her-I do sleep better when she is here. I don't have to worry about her...I know how she is when she is with me.
Having watched Loose Women yesterday, they had a segment on "have you had the conversation with your parter/loved ones about care homes"?
I know that my mother would not want to go into a care home-and thankfully, is not at that stage....yet....and I also know that she is able to say "I don't want your father home any more than he is"....and so do I respect that, despite the fact that I know she is not eating lunch.
Phone call reminders are not enough to prompt her to eat...she needs physical reminders....when she was visiting me...I had to go to work two days of the 17-on one occasion I left her favourite crackers on the counter for her...hoping she would realise that her spreads, etc. were in the fridge. I came home and she hadn't touched the food. On the second occasion I left her plate, a knife and crackers on the counter...and this somehow prompted her to open the fridge, take out her spreads and she had lunch. I was so relieved.
Loose Women were discussing the fact that it is important that the sufferer makes their own decisions about where they want to live (if they can) and so whilst I believe that things could be better, i.e., my father should be taking her out for lunch to ensure she eats (or coming home to eat lunch with her)-she tells me "I'm fine". How do I know if she really is fine? My father does not provide me with updates unless I ask specific questions-and even then-he only knows so much about her daytime routine because he is not with her 9AM-6PM
I honestly question how fine she is.
Apologies for such a long post.
Best wishes to all....
Only Child
I'm 57 years old, live in the UK and my parents live in North America. Over the last 5-10 years my mother has been showing signs of Dementia. It has been incredibly challenging to manage and oversee this problem from afar. She is not one to go to doctors voluntarily (she's 82) but I did manage to get her a GP appointment 4 years ago-which she agreed to go to (under the pretence of checking her blood pressure) etc. The doctor assessed her mind (I believe via a mini mental state exam)-and she passed-so there was no referral to a neurologist made. I was fuming.
Two years ago (2022), we tried again-and this time the GP did agree that things are not all right-and my mum was referred to the neurology department (it's the geriatric clinic/memory clinic) in their city.
She was diagnosed with Mild Cognitive Impairment (MCI) based on the fact that she can still carry out her day to day tasks independently. My father (narcissistic traits) accompanied her to her appointment and when he shared with me the diagnosis, again, I was fuming. "Are you kidding me"? were my exact words. I believe 100% that the fact that my father lives with my mother, and does the food shopping, etc. is masking the severity of the illness. We had countless examples of her confusion, forgetfulness, etc.
Fast forward to 2024 and there has been marked deterioration: she does have moments of lucidity where she remembers what I said 10 mins. ago-but 99% of the time she will not remember a) if she took a shower earlier in the day b) if she has eaten b) what I or anyone else said 10 mins. ago, etc. She has many of the symptoms listed for vascular dementia, though I don't know if that is the kind of dementia she has-her mother had Alzheimer's Disease. When my mother was assessed at the memory clinic-she was offered a brain scan but declined. And so we really don't know which type of Dementia we are dealing with.
It's important to mention that my mother *can* still carry out tasks like make her own breakfast, drive-she drives herself to her hair appointment every Saturday. She knows her way around her local area. This independence is important to her. She is a very proud woman and therefore does not admit to anyone that she is forgetting or gets confused from time to time. She *will* say to me every now and again "I'm losing my mind" "I can't remember anything", etc. But if I would ever then follow that up with "why don't you make an appointment to see that nice doctor at the memory clinic"? she will say "I'm fine".
However, for me, the biggest challenge is dealing with my father-he is 84, he still works (his choice) though he tells me he "has to". I don't believe he has to-I believe he chooses to, in order to spend as little time at home. He simply cannot deal with my mother's forgetfulness and confusion. He shouts at her for forgetting, he says "I told you that....."-all the things the literature say not to say to someone with dementia-he does. And so she ends up feeling **** about herself. He shames her and it is awful to watch. I am constantly "at" him for doing so, which is not helping *our* relationship.
My mother spends all day at home on her own with no mental stimulation. She has 2 nieces in town who could visit her, but don't. Only one of them phones her/Facetimes her. We, as a family really have little support. She is not a "groups" person and despite my suggestions of joining a group/meeting other ladies-she has no interest. She lost her 4 closest friends over the last 20 years. She really has nobody to talk to, other than my father who is at work 9-6PM (though he phones her throughout the day to check in on her).
My mother has two sisters-one lives in the same city as them and one does not. Neither of them have offered to help, despite the fact that they know what is going on-(and they are both younger and both in better health).
Granted, I believe my father is partly to blame for this because I believe he plays down the severity of my mother's decline-to me, and to others. When she visits me, I am constantly on the phone to him, updating him on the latest "she didn't remember that she hasn't had a shower" as an example. He never updates me on how she is and so when I see her after several months....I am always taken aback at the newest/latest examples of decline.
I don't think he is in denial per-se-he knows exactly what is going on because I talk to him about it frequently (especially after she visits me in the UK)-I believe he just can't handle it, and it's primarily because he is embarrassed and ashamed. He is a true narcissist-my mother has mobility issues and he just cannot walk beside her when we hire a wheelchair or mobility scooter to go out and about-he is embarrassed to be seen with her. It's quite clear and obvious that this is what is going on. He genuinely does not have an ounce of empathy in him where my mother is concerned. The dynamic between them is not and has never been that healthy.
Interestingly, when my mother was here visiting me, my father was out socialising with friends 15/17 evenings. He also visited one of his friends who lives in a care home-he spent 2 hours there. However, when it comes to my mother-he avoids spending time with her at all costs.
She was just here for over 2 weeks and the decline, from Christmas, when I last saw them was apparent. There are incontinence issues I was not fully aware of before this visit, etc. He never shares any of this with me-either because he doesn't want to admit what is happening or because he is oblivious to it because he's out all day long. I honestly don't know which it is but I'm sick and tired of him turning a blind eye and prioritising his work over my mother.
As a result of what is happening to my mother, my relationship with my father is suffering-because after each visit (after my mother leaves me) I am made more aware of her decline....and I get on the phone to him and tell him that he needs to spend more time with her. I express my anger and disappointment in him for not spending more time with her. She doesn't always remember to eat between breakfast and dinner-and she is diabetic. This is a concern to me.
My father recently started crying on the phone to me (in response to me shouting at him)-no, I'm not proud for shouting, but I *am* frustrated...and he said "I don't know what to do".
A couple of years ago I suggested that he go to a support group for carers of dementia patients-he said "I don't need this/I'm not ready for that". I believe this would be a game changer for him in that at the moment I am the only person who holds him accountable. If he were to attend a support group a) he would receive support and b) he would also be encouraged and taught how to best help my mother. He really has no clue how to speak to her in a respectful way-he never did. He was spoiled by his own mother and grew up thinking he is god's gift. And in true narcisstic fashion-everyone in his circle thinks he is wonderful (or at least they respond to him as if they do). He can never do any wrong-and so nobody else is holding him accountable for caring for my mother. As a result, I'm the baddie.
A lot of people feel sorry for my father, but a) he is not the angel everyone else thinks he is and b) this is about my mother-it is not about my father...or about me. My primary concern is my mother.
What he does do for her is he will take her to any appointments she has if parking will be difficult (she has reduced mobility) and he takes her for dinner most evenings-she doesn't cook-never did! But as for 9-6PM-she is totally on her own .
As her only daughter and only child....I know that my father could do more for her, like take her for lunch during the day, from time to time-and though I've suggested it many times-he will just say "ya ya" and then never follow suit.
My mother would *not* want somebody (a carer) to come into their house to ensure she is eating. She would hate this. Even after her bilateral hip operation a few years ago, she hated having the carer there for 2-3 weeks....my mother is not a people person. Her standard reply is always "I'm fine". I don't think she realises how severe her cognitive decline is. And if she does realise-she is too proud and embareassed to ask for help.
Another warning sign to me that all is not right is that she is not taking two of her medications at the appropriate times (as per instructions written on the bottles). And so I managed to get her a GP appointment for July....again, under the pretence of having a BP check....and my plan is to fly home (7 hours) to accompany her to this appointment...however I am mindful that my mother *can* still make her own decisions and if I say "mum, can I come with you to the doctor"? If she says "no" I will have flown home for nothing. I say nothing-I know that I can still enjoy my time with her-but I've just spent 2 1/2 weeks with her and was not planning on taking more time off in July-I run my own psychotherapy practice. The flight is costly, and the jetlag is awful...I wasn't planning on taking time off work in July. However, I *would* want to be at the appointment with her-if she is happy for me to be. And no, I can't ask her *now* if she'd like me to be there with her because even if she says "yes" today, and I book my flight for July...she *may* still change her mind and on the day say "no, I want to go alone". It's a tricky one. As I said, I can only take so much time off in a year and I was not planning on taking time off in July. If it was *necessary* (i.e., there was an emergency) of course I would drop everything to fly home...but this is about accompanying her to a GP appointment that she may not want me at.
I have already drafter a letter to the GP which I plan on posting to him ahead of the July appointment, highlighting all of my concerns. It's a 6 page letter despite the fact that the receptionist told me to make to brief. How can I make this brief? There is so much to say!
My father and I both agree on one thing: that my mother's GP (who used to be my GP before I moved to the UK) is very blasé, relaxed, etc. And the way things work where they live is-they do not invite patients in for reviews..they wait for the patient to phone them. I have had arguments with the reception team "how do you expect a patient with dementia to phone you and arrange an appointment-it's unrealistic". Which prompts them to make the appointment for her under the pretence of having her BP checked. You literally have to phone them and beg them to invite the patient in. It's ridiculous. A dementia patient cannot be expected to phone the doctor to make their own appointment.
The above is really just context/background....my main questions/concerns are:
1) Am I supposed to give up/close my practice/business and move back home to where my parents live to ensure my mother eats during the day?
2) How do I get my father to take things more seriously and spend more time with her?
3) I would love my mother to spend more time with me in the UK-she enjoys herself here but she does miss my father (despite the fact that he is not home Mon-Friday daytime). I do care for her better than he does and I also believe that if she were with me for longer periods, I might be able to sway her to get a brain scan done here (I'd pay privately). I love having her here with me and though this is not about me, I actually sleep better when she is here-as stressful as it can be to look after her-I do sleep better when she is here. I don't have to worry about her...I know how she is when she is with me.
Having watched Loose Women yesterday, they had a segment on "have you had the conversation with your parter/loved ones about care homes"?
I know that my mother would not want to go into a care home-and thankfully, is not at that stage....yet....and I also know that she is able to say "I don't want your father home any more than he is"....and so do I respect that, despite the fact that I know she is not eating lunch.
Phone call reminders are not enough to prompt her to eat...she needs physical reminders....when she was visiting me...I had to go to work two days of the 17-on one occasion I left her favourite crackers on the counter for her...hoping she would realise that her spreads, etc. were in the fridge. I came home and she hadn't touched the food. On the second occasion I left her plate, a knife and crackers on the counter...and this somehow prompted her to open the fridge, take out her spreads and she had lunch. I was so relieved.
Loose Women were discussing the fact that it is important that the sufferer makes their own decisions about where they want to live (if they can) and so whilst I believe that things could be better, i.e., my father should be taking her out for lunch to ensure she eats (or coming home to eat lunch with her)-she tells me "I'm fine". How do I know if she really is fine? My father does not provide me with updates unless I ask specific questions-and even then-he only knows so much about her daytime routine because he is not with her 9AM-6PM
I honestly question how fine she is.
Apologies for such a long post.
Best wishes to all....
Only Child
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