Only Child-Mum has Dementia (in another country) father incapable of supporting her

Only_Child

Registered User
May 31, 2024
21
0
London
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
 
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Jessbow

Registered User
Mar 1, 2013
5,888
0
Midlands
Big but....
your father maybe finding it hard
he may bury his head in the sand
he cant be forced to admit , or indeed do, anything.

On the one hand you describe your mother as fairly independant, and the next quite dependant.
What do you want to happen, what can you action? If you cant action it from afar, then you probably need to let it go. Nothing harder for the one at the coal face to be told they should do this that and the other
 

Grannie G

Volunteer Moderator
Apr 3, 2006
82,735
0
Kent
Welcome to the forum @Only_Child

I understand your concerns, frustration, and the enormous disadvantage of long-distance caring.

Trying to solve problems by expecting others to take up your suggestions about their behaviour is heading for failure from day one. It is an impossible ask.

I`m afraid all you can do is encourage and support both parents and allow your father to care for his wife in the only way he knows how.

I`m sorry to sound negative but your father needs your support rather than your criticism. He has a task and a half on his hands and it looks as if he is finding it overwhelming. Sometimes when life throws too many challenges, it`s easier to deny them and put your head in the sands.

Your mother is not yet ready for suggestions from you or your father. The time may come when she will be more receptive but until then, I`m afraid you may have to let it be.
 

Collywobbles

Registered User
Feb 27, 2018
439
0
Succinctly:

1) No

2) You can’t

3) Only you will know whether this is the right thing to do. There’s no one size fits all dementia. It will depend on you, your Mum, your Dad, the circumstances etc. Although you should be aware that folks with dementia don’t cope well with changes. What worked before the dementia might do harm now, and possibly even accelerate the problems.

I know this is of zero help, but my parents live 5 miles away from me and I have very similar concerns and issues. Dad decides to turn a blind eye to Mum’s Alzheimer’s limitations whenever it suits him. He complains about her problems, but when my sister and I propose solutions, he ignores us.

The bottom line is that your Mum is vulnerable but your Dad is her carer and is a thinking adult. In this situation, a change of approach or admission that help is needed, is usually only precipitated by some sort of crisis. I swear my Dad won’t be accepting any additional help until Mum has ended up in hospital. She’s already had two falls which could easily have caused hip fractures, but she has refused to allow an ambulance to be called and Dad won’t override her wishes to get her checked.

My sister and I are bystanders until something pretty catastrophic happens. If we can’t control the situation from the other side of town, you don’t stand a chance on the other side of the Atlantic. It goes against the grain, but for your own mental wellbeing, you may need to step back and let your parents’ situation play out for a while.

There will doubtless be future situations for which your support will be desperately needed - try not to burn yourself out in advance of them. You can’t prevent them - that’s just the nature of dementia.
 
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Jaded'n'faded

Registered User
Jan 23, 2019
5,406
0
High Peak
I agree with other replies.

I think you're expecting your father to look after your mother in the way you would if you were there. But he's not you.

He is 84, he works full time and he can't/won't do things the way you would. It's not really fair to expect that.

It seems your mother would benefit from some company during the day but your father may be continuing to work just to get a break. What would his life look like if he didn't? He's been dealing with this for a long time, with very little time off, yet you criticise him for socialising while your mum was staying with you. He may be out during the day but he's with her the rest of the time with no help whatsoever. You've said yourself how stressful it is being with your mother and he's a lot older than you!

Instead of trying to get him to do even more, it might be better to organise some help for them both - a cleaner, gardener or a befriender for your mum who could maybe take her out during the day. However, I think you need to be prepared for your parents to refuse and say they can manage and nothing will change until a crisis occurs. (And it doesn't sound like your mother is fit to still be driving! Will it take an accident before someone stops her?)

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".
This says a lot. If you read around the forum you will find many instances of relatives who live at a distance (i.e. are not involved in everyday, hands-on care) telling the person who is actually doing all the caring what they should or shouldn't be doing, how they are doing it wrong and how they should do things better. I appreciate you are an only child and only want the best for your mother, but honestly, this is not helping your father and definitely won't improve your relationship with him. He sounds desperately close to carer breakdown.

If you want things done 'your way', the only realistic thing to do is go there and do it. It's not fair to expect your father to do even more than he is already doing.

Really sorry if my post is offensive - it is not intended that way.
 

Only_Child

Registered User
May 31, 2024
21
0
London
Big but....
your father maybe finding it hard
he may bury his head in the sand
he cant be forced to admit , or indeed do, anything.

On the one hand you describe your mother as fairly independant, and the next quite dependant.
What do you want to happen, what can you action? If you cant action it from afar, then you probably need to let it go. Nothing harder for the one at the coal face to be told they should do this that and the other
Thanks Jessbow for your reply: my father *is* finding it hard and he *is* burying his head in the sand-and you are right (and I needed to hear this) that he can't be forced to do anything-I realise that we can't change others. What angers me though, is that he will go and spend two hours visiting his friend in a care home, sitting with him, talking to him-but he doesn't do that with my mother. He does the practical tasks like the food shop, etc. and they go for dinner....but he doesn't talk to her the way he talks to his friends. You would have to observe him to really understand what I mean. He is condescending and shames her. This is the bit that none of you who have replied, really understand. I can feel empathy for him until I remind myself how he speaks to her. And then my empathy goes.

All that said, I appreciate your reply....thank you:).
 

Only_Child

Registered User
May 31, 2024
21
0
London
Welcome to the forum @Only_Child

I understand your concerns, frustration, and the enormous disadvantage of long-distance caring.

Trying to solve problems by expecting others to take up your suggestions about their behaviour is heading for failure from day one. It is an impossible ask.

I`m afraid all you can do is encourage and support both parents and allow your father to care for his wife in the only way he knows how.

I`m sorry to sound negative but your father needs your support rather than your criticism. He has a task and a half on his hands and it looks as if he is finding it overwhelming. Sometimes when life throws too many challenges, it`s easier to deny them and put your head in the sands.

Your mother is not yet ready for suggestions from you or your father. The time may come when she will be more receptive but until then, I`m afraid you may have to let it be.
Hi Grannie G-thank you for your reply. I know you are right-that my father needs my support rather than my criticism, but in the background of their relationship (wife with dementia, husband who is all there cognitively, physically and still works at the age of 84) is a narcissistic personality. I don't want you all know about this type of personality, but it very dangerous and damaging. I would go so far as to say that mixing a dementia patient with a narcissistic carer is a recipe for disaster. Yet, that is what it is.

The way he speaks to my mother is vile-and this is my mother we are talking about. I would do whatever it takes to protect her.

I do agree with all else that you wrote....re my mother not being ready for suggestions, and the head in sands on my father's part.

Thank you again for your reply-it *is* appreciated.
 

Only_Child

Registered User
May 31, 2024
21
0
London
Succinctly:

1) No

2) You can’t

3) Only you will know whether this is the right thing to do. There’s no one size fits all dementia. It will depend on you, your Mum, your Dad, the circumstances etc. Although you should be aware that folks with dementia don’t cope well with changes. What worked before the dementia might do harm now, and possibly even accelerate the problems.

I know this is of zero help, but my parents live 5 miles away from me and I have very similar concerns and issues. Dad decides to turn a blind eye to Mum’s Alzheimer’s limitations whenever it suits him. He complains about her problems, but when my sister and I propose solutions, he ignores us.

The bottom line is that your Mum is vulnerable but your Dad is her carer and is a thinking adult. In this situation, a change of approach or admission that help is needed, is usually only precipitated by some sort of crisis. I swear my Dad won’t be accepting any additional help until Mum has ended up in hospital. She’s already had two falls which could easily have caused hip fractures, but she has refused to allow an ambulance to be called and Dad won’t override her wishes to get her checked.

My sister and I are bystanders until something pretty catastrophic happens. If we can’t control the situation from the other side of town, you don’t stand a chance on the other side of the Atlantic. It goes against the grain, but for your own mental wellbeing, you may need to step back and let your parents’ situation play out for a while.

There will doubtless be future situations for which your support will be desperately needed - try not to burn yourself out in advance of them. You can’t prevent them - that’s just the nature of dementia.
Hi Collywobbles, thank you for your reply. It's interesting that you relate to much of what I wrote with a much shorter distance between you and your parents. I agree with you that my father is her carer, and he is a thinking adult-but he is also selfish....in lots of ways. I don't deny what he does for her-I do realise he does a lot for her re-the food shop, and taking her for dinner almost every night....but the emotional support from him is lacking. I am her daughter and I consider myself her carer too, albeit from afar. I see it as my responsibility to be involved as I am her only child.

I'm so sorry to hear about your mum's falls, etc.

"There will doubtless be future situations for which your support will be desperately needed - try not to burn yourself out in advance of them. You can’t prevent them - that’s just the nature of dementia". This really hit home to me-thank you....the part about burnout in advance will stay with me this weekend...I need to process this.....it's very helpful to hear. Thank you again for your reply.
 

Only_Child

Registered User
May 31, 2024
21
0
London
I agree with other replies.

I think you're expecting your father to look after your mother in the way you would if you were there. But he's not you.

He is 84, he works full time and he can't/won't do things the way you would. It's not really fair to expect that.

It seems your mother would benefit from some company during the day but your father may be continuing to work just to get a break. What would his life look like if he didn't? He's been dealing with this for a long time, with very little time off, yet you criticise him for socialising while your mum was staying with you. He may be out during the day but he's with her the rest of the time with no help whatsoever. You've said yourself how stressful it is being with your mother and he's a lot older than you!

Instead of trying to get him to do even more, it might be better to organise some help for them both - a cleaner, gardener or a befriender for your mum who could maybe take her out during the day. However, I think you need to be prepared for your parents to refuse and say they can manage and nothing will change until a crisis occurs. (And it doesn't sound like your mother is fit to still be driving! Will it take an accident before someone stops her?)


This says a lot. If you read around the forum you will find many instances of relatives who live at a distance (i.e. are not involved in everyday, hands-on care) telling the person who is actually doing all the caring what they should or shouldn't be doing, how they are doing it wrong and how they should do things better. I appreciate you are an only child and only want the best for your mother, but honestly, this is not helping your father and definitely won't improve your relationship with him. He sounds desperately close to carer breakdown.

If you want things done 'your way', the only realistic thing to do is go there and do it. It's not fair to expect your father to do even more than he is already doing.

Really sorry if my post is offensive - it is not intended that way.
Thank you Jaded for your reply. No, it wasn't offensive-I appreciate your honesty.

I don't agree that my mother should not be driving-she does know where she is going, and she is safe on the roads. Though you have made me realise that it might be a good idea for me to get in the car with her (which I normally do when I visit them) and assess this for myself. When I was last in the car with her (May 2023) there were no signs or reasons for me to deem her a danger on the road.

This resonated with me:
"What would his life look like if he didn't? He's been dealing with this for a long time, with very little time off".
I agree with you that he would not be able to be home with her all day-I merely want him to take breaks during the day for lunch to come home-he works for himself-he has his own firm-he is his own boss.

Re:
"you criticise him for socialising while your mum was staying with you".
I don't begrudge him for socialising-but he is constantly putting her down for having no friends, and bragging about all of the friends he has....it's a lot more complex than I have explained.
He may be out during the day but he's with her the rest of the time with no help whatsoever. You've said yourself how stressful it is being with your mother and he's a lot older than you!
Yes, it *is* stressful, and I do appreciate that he is older, but to clarify: I spend more time with my mother in a 2 1/2 week period than he does in one month (30 days). I spend on average 9 hours/day in her presence-he spends 2-3 hours max.

When he *is* home with her in the evenings-he is on the phone with his friends or in the other room watching TV-he ignores her. And so whilst on the surface to all of you it looks like he is with her much-he is not "present". I hope I am making sense. My mother can still have conversations and engage in healthy debate....she needs this on a daily basis for her mind. But she doesn't get much of it from him-though when he goes to work, oh boy does he converse with his colleagues. It's a very sad situation-the dynamic between them is not so straightforward and whilst on the surface, to all of you it may seem like I am hard on him-it is for good reason. There is a history there.

Re: "If you read around the forum you will find many instances of relatives who live at a distance (i.e. are not involved in everyday, hands-on care) telling the person who is actually doing all the caring what they should or shouldn't be doing, how they are doing it wrong and how they should do things better".

I would not be doing that if he spent more time with her and was verbally supportive-but what I see is verbal abuse. So please don't suggest that I'm being hard on him-he is nasty towards her, he is shaming of her, etc. And it is *this* that I have a problem with. I am not being nit picky about how he should or should not be caring for her (i.e., why did you buy that bread and not the other bread")-it's about *how* he speaks to her that is nauseating.

I do appreciate your input, but perhaps my point about how verbally critical *he* is of my mother wasn't emphasised enough. I say this hand on heart-he is verbally abusive towards her, and I would have a big problem with anybody making excuses for this-I do know it can be hard and stressful, but surely we all have to practice self-care ourselves, i.e., breathing, taking breaks, etc. in order to not make the person with the dementia problem feel worse than they already do.
Finally and re:
Instead of trying to get him to do even more, it might be better to organise some help for them both - a cleaner, gardener or a befriender for your mum who could maybe take her out during the day. However, I think you need to be prepared for your parents to refuse and say they can manage and nothing will change until a crisis occurs. (And it does

They don't have a garden or need help with anything around the house-they do have a cleaner:). My mother would not want a befriender or someone like a carer (my father would be open to it). It's very unfortunate that her four friends have all died...and our family (her nieces) don't visit though I did speak to one cousin who is trying to arrange to visit my mother for lunch one day. I'm hoping that comes to fruition and can maybe be a regular thing.

Thank you again for your reply-I do value all of this input. I may not agree with all of it-because nobody understands my parents, their relationship, the way I do, but I do appreciate the replies.
 

canary

Registered User
Feb 25, 2014
25,560
0
South coast
Hello @Only_Child
I have read all through this thread and I would just like to make one small comment.
If you ask someone with dementia if they want to do something, this answer is almost invariably NO. As another member on here often points out - if you wait for them to agree to something, you will wait forever. A way round this is to use what is known on here as "love lies" and in other places as "therapeutic untruths" - you have to come up with a "reason" why they should do it, that they will accept, even if, in reality, it is not actually true

There comes a time when you have to stop enabling their wants and start to implementing their needs, but only you can tell when that time has arrived.
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,406
0
High Peak
Though you have made me realise that it might be a good idea for me to get in the car with her
A lot can change in a year! The day before a person with dementia gets lost, misinterprets a road sign, misjudges distances, etc, they were perfectly OK to drive. Please don't let it reach accident stage before stopping her driving. Your mother is cognitively impaired and driving is tricky enough when you have full capacity. Her driving will be fine... until the day that it isn't.

I do appreciate what you say about knowing your parents so well and all their history. But you are still on the outside looking in and it's hard to know how a marriage works (or doesn't) because we only see a very small part of it. It could be that your father no longer wants to be with your mother (which could have happened before or after dementia set in) but feels obliged to look after her. This could make him feel resentful and might explain some of the appalling behaviour towards her that you have described. (And no, there is no excuse for being nasty.) If you're really concerned he may be mistreating/negelcting her you could contact their social services and report it as a safeguarding issue.

But when you said he cried on the phone and said he doesn't know what to do, that sounds like a person who DOES care but is at his wits end. He may be heading out to work or talking to friends because he just can't face the reality of dementia and the loss of the wife he knew. He may be grieving the loss of their shared future together or worrying who will look after him. (He might be in good health now but he's 84 so that is unlikely to continue indefinitely.) He may just be exhausted and have given all he has to give - not everyone is cut out to be a carer. (I am certainly not.)

So on top of all he's doing, he's got you bending his ear about how he's doing it all wrong. He can't change. He's doing his best as he sees it though that may not be how you see it! You said he'd be willing to have some help with your mother so why not help him arrange that?

surely we all have to practice self-care ourselves, i.e., breathing, taking breaks, etc
I'm pretty sure your father's generation have never done such things!

I don't see an easy solution to your situation I'm afraid. Things will continue as they are with your parents until there's a crisis of some sort. It's incredibly difficult to look after someone with dementia, especially if you are living with them. The only way you could change things would be if you were there to personally supervise. It would be a big decision to give up your life here to go and look after your mum. Sadly, she won't improve whatever you do (but will get a whole lot worse) so you've got a lot to consider. (I don't envy you!) It's hard to stand back and watch things fall apart but as others have said, this can happen even if you live nearby.

My best advice is this: don't fall out with your dad over care of your mum. He's doing what he can.
 

Only_Child

Registered User
May 31, 2024
21
0
London
A lot can change in a year! The day before a person with dementia gets lost, misinterprets a road sign, misjudges distances, etc, they were perfectly OK to drive. Please don't let it reach accident stage before stopping her driving. Your mother is cognitively impaired and driving is tricky enough when you have full capacity. Her driving will be fine... until the day that it isn't.

I do appreciate what you say about knowing your parents so well and all their history. But you are still on the outside looking in and it's hard to know how a marriage works (or doesn't) because we only see a very small part of it. It could be that your father no longer wants to be with your mother (which could have happened before or after dementia set in) but feels obliged to look after her. This could make him feel resentful and might explain some of the appalling behaviour towards her that you have described. (And no, there is no excuse for being nasty.) If you're really concerned he may be mistreating/negelcting her you could contact their social services and report it as a safeguarding issue.

But when you said he cried on the phone and said he doesn't know what to do, that sounds like a person who DOES care but is at his wits end. He may be heading out to work or talking to friends because he just can't face the reality of dementia and the loss of the wife he knew. He may be grieving the loss of their shared future together or worrying who will look after him. (He might be in good health now but he's 84 so that is unlikely to continue indefinitely.) He may just be exhausted and have given all he has to give - not everyone is cut out to be a carer. (I am certainly not.)

So on top of all he's doing, he's got you bending his ear about how he's doing it all wrong. He can't change. He's doing his best as he sees it though that may not be how you see it! You said he'd be willing to have some help with your mother so why not help him arrange that?


I'm pretty sure your father's generation have never done such things!

I don't see an easy solution to your situation I'm afraid. Things will continue as they are with your parents until there's a crisis of some sort. It's incredibly difficult to look after someone with dementia, especially if you are living with them. The only way you could change things would be if you were there to personally supervise. It would be a big decision to give up your life here to go and look after your mum. Sadly, she won't improve whatever you do (but will get a whole lot worse) so you've got a lot to consider. (I don't envy you!) It's hard to stand back and watch things fall apart but as others have said, this can happen even if you live nearby.

My best advice is this: don't fall out with your dad over care of your mum. He's doing what he can.

A lot can change in a year! The day before a person with dementia gets lost, misinterprets a road sign, misjudges distances, etc, they were perfectly OK to drive. Please don't let it reach accident stage before stopping her driving. Your mother is cognitively impaired and driving is tricky enough when you have full capacity. Her driving will be fine... until the day that it isn't.

I do appreciate what you say about knowing your parents so well and all their history. But you are still on the outside looking in and it's hard to know how a marriage works (or doesn't) because we only see a very small part of it. It could be that your father no longer wants to be with your mother (which could have happened before or after dementia set in) but feels obliged to look after her. This could make him feel resentful and might explain some of the appalling behaviour towards her that you have described. (And no, there is no excuse for being nasty.) If you're really concerned he may be mistreating/negelcting her you could contact their social services and report it as a safeguarding issue.

But when you said he cried on the phone and said he doesn't know what to do, that sounds like a person who DOES care but is at his wits end. He may be heading out to work or talking to friends because he just can't face the reality of dementia and the loss of the wife he knew. He may be grieving the loss of their shared future together or worrying who will look after him. (He might be in good health now but he's 84 so that is unlikely to continue indefinitely.) He may just be exhausted and have given all he has to give - not everyone is cut out to be a carer. (I am certainly not.)

So on top of all he's doing, he's got you bending his ear about how he's doing it all wrong. He can't change. He's doing his best as he sees it though that may not be how you see it! You said he'd be willing to have some help with your mother so why not help him arrange that?


I'm pretty sure your father's generation have never done such things!

I don't see an easy solution to your situation I'm afraid. Things will continue as they are with your parents until there's a crisis of some sort. It's incredibly difficult to look after someone with dementia, especially if you are living with them. The only way you could change things would be if you were there to personally supervise. It would be a big decision to give up your life here to go and look after your mum. Sadly, she won't improve whatever you do (but will get a whole lot worse) so you've got a lot to consider. (I don't envy you!) It's hard to stand back and watch things fall apart but as others have said, this can happen even if you live nearby.

My best advice is this: don't fall out with your dad over care of your mum. He's doing what he can.
Hi Jaded-thank you so much for all of the above, and please know that I am grateful for you input. I hear you on the "a lot can change in a year" and:
The day before a person with dementia gets lost, misinterprets a road sign, misjudges distances, etc, they were perfectly OK to drive. Please don't let it reach accident stage before stopping her driving. Your mother is cognitively impaired and driving is tricky enough when you have full capacity. Her driving will be fine... until the day that it isn't.
What I don't understand is *how* and when is the right time to have that discussion with my mother? Who is in a position to deem her a danger on the roads? I have no reason to believe that she is a danger at the moment, and I'm quite certain that my father doesn't either-though I do understand what you are saying re-one day she can be OK and the next-not. I do hear you on this!

We don't have any reason to believe that she gets lost, or goes through red lights. I do understand that this can happen at any point from here on in, but surely one does not all of a sudden lose their right to drive once they receive a diagnosis of Mild Cognitive Impairment? Otherwise the doctor would have had the conversation with her/with my father-no?

And on the resentment front-you are absolutely correct. I know for certain that he resents her-she has had mobility problems for years and he has resented the fact that they are unable to do the type of activities that his friends do with their wives. But what I would say as a psychotherapist is this: his own thoughts and expectations are responsible for how he feels; he has not *accepted* that my mother cannot walk 2 miles, or play tennis or do whatever it is that he wants to do with her-it's about accepting a person's reality, rather than wishing for it to be different. For the last 10-20 years he has been wishing for it to be different. He doesn't accept her for her limitations. He constantly compares her to his friends's wives who are more able.

It's pretty damaging to one's self-esteem when your partner constantly gives you the message that you're not good enough as you are. And so my heart breaks for my mother...and of course, I do feel for my father.

Re: "that sounds like a person who DOES care but is at his wits end. He may be heading out to work or talking to friends because he just can't face the reality of dementia and the loss of the wife he knew. He may be grieving the loss of their shared future together or worrying who will look after him. (He might be in good health now but he's 84 so that is unlikely to continue indefinitely.) He may just be exhausted and have given all he has to give - not everyone is cut out to be a carer. (I am certainly not.")...

I hear you on this front too-he *is* at his wits end, but he also knows that *I* am there for both of them if god forbid they needed me to be there/move home, even temporarily. They have both had surgery over the past 5 years and I was home for both their operations and recovery. I *am* a doting daughter in that regard. I am there for them.

And I agree with you-not everyone is cut out to be a carer-he certainly isn't. When my grandmother (his mother) was alive-she was widowed for 15 years...my father would pop in once/week to check that she was alive, and walk out again. He just couldn't stay for 5 mins. to sit down and talk with her. It's just not in him.

But I repeat...all of the above is in the context of narcissism-where his needs come first. When they go for dinner-they go where *he* wants to go. My mother used to be assertive, and self-assured. Her diabetes diagnosis almost 15-20 years ago changed this-I saw her shrivel...it was her first real health scare/problem and it changed her. She has become very passive, agreeable...just to keep the peace. And I think she knows deep down that my father is all she has (in their city) and so she'd better be gracious for what he does because she would be lost without him. I think she knows this on some level.

And I hear you re-the self-care and his generation not being into that-I agree fully.

And re-"My best advice is this: don't fall out with your dad over care of your mum. He's doing what he can". This makes me feel very tearful because I know I give him a hard time-and I don't mean to-I just want what is best for my mother. It's obviously very difficult to balance what is best for him, and what is best for her-as the two are not necessarily compatible...do you know what I mean? What is best for him is not = to what is best for her.

To be clear-my father is a good guy, he's a good provider-he is just a very poor carer and not cut out for this role *at all*.

Thank you again....your reply has given me much to consider. xxx
 

Only_Child

Registered User
May 31, 2024
21
0
London
Hello @Only_Child
I have read all through this thread and I would just like to make one small comment.
If you ask someone with dementia if they want to do something, this answer is almost invariably NO. As another member on here often points out - if you wait for them to agree to something, you will wait forever. A way round this is to use what is known on here as "love lies" and in other places as "therapeutic untruths" - you have to come up with a "reason" why they should do it, that they will accept, even if, in reality, it is not actually true

There comes a time when you have to stop enabling their wants and start to implementing their needs, but only you can tell when that time has arrived.
Canary-thank you for this. My mother is not severe so it would be very hard to force anything on her even via a love lie or therapeutic untruth. She is a very intelligent woman-she knows when she is being lied to or manipulated:). But I do hear you. And I agree with you and love the differentiation between their wants and needs. For now, the situation is manageable for both of them-but I do know the time will come when either I will need to move home and become her carer, or they will need to get a carer in for her. I am quite certain that while she *is* able to understand all of this-she will not be agreeable to having a carer in the house. She just won't. I know her well and I've already suggested it-the answer was no. I cannot force it on her.

If, for example, she was no longer able to do the laundry (this is the one household chore she does)-she has a cleaner to cleans their apartment-I might be able to "get in" that way, i.e., "mum, maybe it would be a good idea to have someone come over to help you with the laundry"...and then as she gets to know the person/carer they can take on more responsibility. But just to add....and this is really important: my mother does not like many people! And yes, I know-many of you might say "she has no choice"-but she does. At least for now. Whilst she can still think for herself and make decisions, etc. it is her prerogative to say "I don't want anyone helping me with x, y or z". I believe strongly that she deserves to be treated with dignity, and as if she still have a functioning brain-which she does. I hope I'm making sense.

Thank you again for taking time to reply. Lots to consider:).
 

Only_Child

Registered User
May 31, 2024
21
0
London
A lot can change in a year! The day before a person with dementia gets lost, misinterprets a road sign, misjudges distances, etc, they were perfectly OK to drive. Please don't let it reach accident stage before stopping her driving. Your mother is cognitively impaired and driving is tricky enough when you have full capacity. Her driving will be fine... until the day that it isn't.

I do appreciate what you say about knowing your parents so well and all their history. But you are still on the outside looking in and it's hard to know how a marriage works (or doesn't) because we only see a very small part of it. It could be that your father no longer wants to be with your mother (which could have happened before or after dementia set in) but feels obliged to look after her. This could make him feel resentful and might explain some of the appalling behaviour towards her that you have described. (And no, there is no excuse for being nasty.) If you're really concerned he may be mistreating/negelcting her you could contact their social services and report it as a safeguarding issue.

But when you said he cried on the phone and said he doesn't know what to do, that sounds like a person who DOES care but is at his wits end. He may be heading out to work or talking to friends because he just can't face the reality of dementia and the loss of the wife he knew. He may be grieving the loss of their shared future together or worrying who will look after him. (He might be in good health now but he's 84 so that is unlikely to continue indefinitely.) He may just be exhausted and have given all he has to give - not everyone is cut out to be a carer. (I am certainly not.)

So on top of all he's doing, he's got you bending his ear about how he's doing it all wrong. He can't change. He's doing his best as he sees it though that may not be how you see it! You said he'd be willing to have some help with your mother so why not help him arrange that?


I'm pretty sure your father's generation have never done such things!

I don't see an easy solution to your situation I'm afraid. Things will continue as they are with your parents until there's a crisis of some sort. It's incredibly difficult to look after someone with dementia, especially if you are living with them. The only way you could change things would be if you were there to personally supervise. It would be a big decision to give up your life here to go and look after your mum. Sadly, she won't improve whatever you do (but will get a whole lot worse) so you've got a lot to consider. (I don't envy you!) It's hard to stand back and watch things fall apart but as others have said, this can happen even if you live nearby.

My best advice is this: don't fall out with your dad over care of your mum. He's doing what he can.
Jaded-sorry....I meant to address: "You said he'd be willing to have some help with your mother so why not help him arrange that"? It's because my mother would not want anyone in the house with her helping her. She feels capable, and is still capable of washing, bathing,, making her coffee and breakfast. And so even though my father would be agreeable to have someone in the house...my mother *is* still able to do these things for herself. I *am* concerned that she isn't eating lunch, but my father has recently said he will try and come home on certain days to have lunch with her or take her out....so I'm hoping he does.

I *have* mentioned this in the letter I'm planning to send to her GP so I'll let the GP come up with a plan as to how to get her to have lunch or at least an afternoon snack. xxx
 

cymbid

Registered User
Jan 3, 2024
164
0
My humble take on this, You think your father should love and look after your mother as a devoted husband. But he is not just a husband, he is not just a dad. He is a man. This woman he has to tend to may not be the woman he fell in love with anymore, perhaps in other circumstances they would have parted. It is hard enough to care for someone you love, It is a life sentence to care for someone you have no feelings for
 

Only_Child

Registered User
May 31, 2024
21
0
London
My humble take on this, You think your father should love and look after your mother as a devoted husband. But he is not just a husband, he is not just a dad. He is a man. This woman he has to tend to may not be the woman he fell in love with anymore, perhaps in other circumstances they would have parted. It is hard enough to care for someone you love, It is a life sentence to care for someone you have no feelings for
Thanks, Cynbid-I hear you loud and clear, and I know that many may not agree with me but this is how I see things: when you marry, you take a vow "in sickness and in health". I do realise that I am holding him to high standards (this is something that I am aware of)-I am self-aware:). I don't disagree with anything you've said but when one partner in a marriage is unwell, and the other well-it's not OK for the well one to act in hurtful ways towards the unwell one. I *am* also trained in couples therapy, so am speaking not just as a daughter, but as a psychotherapist. It's hard enough when the dynamics are like this when both partners are healthy, but when one is unwell (especially in the brain department)....it borders on abuse. In my eyes, it's not OK.
 

Only_Child

Registered User
May 31, 2024
21
0
London
Hi Jaded-thank you so much for all of the above, and please know that I am grateful for you input. I hear you on the "a lot can change in a year" and:

What I don't understand is *how* and when is the right time to have that discussion with my mother? Who is in a position to deem her a danger on the roads? I have no reason to believe that she is a danger at the moment, and I'm quite certain that my father doesn't either-though I do understand what you are saying re-one day she can be OK and the next-not. I do hear you on this!

We don't have any reason to believe that she gets lost, or goes through red lights. I do understand that this can happen at any point from here on in, but surely one does not all of a sudden lose their right to drive once they receive a diagnosis of Mild Cognitive Impairment? Otherwise the doctor would have had the conversation with her/with my father-no?

And on the resentment front-you are absolutely correct. I know for certain that he resents her-she has had mobility problems for years and he has resented the fact that they are unable to do the type of activities that his friends do with their wives. But what I would say as a psychotherapist is this: his own thoughts and expectations are responsible for how he feels; he has not *accepted* that my mother cannot walk 2 miles, or play tennis or do whatever it is that he wants to do with her-it's about accepting a person's reality, rather than wishing for it to be different. For the last 10-20 years he has been wishing for it to be different. He doesn't accept her for her limitations. He constantly compares her to his friends's wives who are more able.

It's pretty damaging to one's self-esteem when your partner constantly gives you the message that you're not good enough as you are. And so my heart breaks for my mother...and of course, I do feel for my father.

Re: "that sounds like a person who DOES care but is at his wits end. He may be heading out to work or talking to friends because he just can't face the reality of dementia and the loss of the wife he knew. He may be grieving the loss of their shared future together or worrying who will look after him. (He might be in good health now but he's 84 so that is unlikely to continue indefinitely.) He may just be exhausted and have given all he has to give - not everyone is cut out to be a carer. (I am certainly not.")...

I hear you on this front too-he *is* at his wits end, but he also knows that *I* am there for both of them if god forbid they needed me to be there/move home, even temporarily. They have both had surgery over the past 5 years and I was home for both their operations and recovery. I *am* a doting daughter in that regard. I am there for them.

And I agree with you-not everyone is cut out to be a carer-he certainly isn't. When my grandmother (his mother) was alive-she was widowed for 15 years...my father would pop in once/week to check that she was alive, and walk out again. He just couldn't stay for 5 mins. to sit down and talk with her. It's just not in him.

But I repeat...all of the above is in the context of narcissism-where his needs come first. When they go for dinner-they go where *he* wants to go. My mother used to be assertive, and self-assured. Her diabetes diagnosis almost 15-20 years ago changed this-I saw her shrivel...it was her first real health scare/problem and it changed her. She has become very passive, agreeable...just to keep the peace. And I think she knows deep down that my father is all she has (in their city) and so she'd better be gracious for what he does because she would be lost without him. I think she knows this on some level.

And I hear you re-the self-care and his generation not being into that-I agree fully.

And re-"My best advice is this: don't fall out with your dad over care of your mum. He's doing what he can". This makes me feel very tearful because I know I give him a hard time-and I don't mean to-I just want what is best for my mother. It's obviously very difficult to balance what is best for him, and what is best for her-as the two are not necessarily compatible...do you know what I mean? What is best for him is not = to what is best for her.

To be clear-my father is a good guy, he's a good provider-he is just a very poor carer and not cut out for this role *at all*.

Thank you again....your reply has given me much to consider. xxx
I wanted to add.....after having read and really digested and understood all of the replies to my post...I emailed my father this afternoon telling him that I love him and that I am sorry for giving him such a hard time, and that I realise this is difficult for him too. He replied with "it's OK-I love you very much". I know it was the right thing to do (for me to email him). Thank you to all of you for making me realise how difficult this is for him.
 

SherwoodSue

Registered User
Jun 18, 2022
777
0
On the issue of driving. If your mum has diabetes and can’t be trusted to eat regularly then that is a recipe for disaster. Hypos can come in silently in time. Here if you are on insulin you are legally required to test blood sugar before driving. Someone didn’t had an awful accident and was imprisoned as it is the drivers responsibility
Your mums world would shrink further I know but taxis?
 

Only_Child

Registered User
May 31, 2024
21
0
London
On the issue of driving. If your mum has diabetes and can’t be trusted to eat regularly then that is a recipe for disaster. Hypos can come in silently in time. Here if you are on insulin you are legally required to test blood sugar before driving. Someone didn’t had an awful accident and was imprisoned as it is the drivers responsibility
Your mums world would shrink further I know but taxis?
Thank you Sue-she isn't on Insulin but I hear you and plan on discussing this with her GP. I appreciate your reply very much. Just to add: she does eat breakfast late (around 11AM or noon) and when she does drive, it's normally at 1:30-2:00PM so she's normally OK blood sugar wise-she does test her sugars each morning (she does have the capacity and remembers to do so-she writes them down every morning and I check with my father that she has). And she did when she was visiting me in the UK, so I do know that she checks them, but I appreciate you raising this.
 
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Ellie2018

Registered User
Jun 26, 2023
274
0
I wanted to add.....after having read and really digested and understood all of the replies to my post...I emailed my father this afternoon telling him that I love him and that I am sorry for giving him such a hard time, and that I realise this is difficult for him too. He replied with "it's OK-I love you very much". I know it was the right thing to do (for me to email him). Thank you to all of you for making me realise how difficult this is for him.
That’s great and will hopefully make you both feel a bit better. It’s really hard to understand just how hard it is unless you are there 24/7. My husband had MCI and now has Alzheimer’s and I’m lucky compared to many but I can’t tell you how frustrated it can make you when you are asked ‘are we going out’ or ‘can I have a biscuit’ every single minute for hours on end. Giving him biscuits doesn’t help because it’s not another one for him, it’s the first one. And for me, being criticised by his daughter who sees him about 8 hours a year just makes me feel angry and resentful.

You mention that your dad doesn’t chat with your mum, I wonder if she ‘hosts’ when she is with you but not with him. My husband doesn’t have any conversation at all with me but he seems to be able to chat to his daughter and I believe that he hosts for the short period she is with him. It’s very lonely when your soul mate of decades doesn’t know how to have a conversation with you and the other side of that is everything you did as a couple is now just you, all the social stuff, all the responsibility - I now have the responsibility for money, food, driving, blocked drains, the lot and it’s hard to explain how that feels and to my sadness, I do sometimes get frustrated and angry and shout at him and have resorted to counselling and anti anxiety medication to help me keep calm. Good luck with your situation.