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

Jaded'n'faded

Registered User
Jan 23, 2019
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High Peak
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.
Brilliant - well done.

Maybe ask him what things you could do to support him/help your mum. He might have some ideas or it might give you more clues as to what things he's struggling with.

Also, if she isn't always remembering to take pills on time, have you thought about getting a 'dosette' box for her meds that sounds an alarm reminder for her to take them? Or could you set up a Zoom/Alexa-thingummy or similar on a laptop so you could 'drop in' and just check on her during the day? Small things like that might give you some reassurance too.
 

Only_Child

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May 31, 2024
21
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London
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.
Hi Ellie-my heart breaks for you, and thank you for sharing your story, from the perspective of the carer. It also helps to hear things from the perspective of the one who is with the "patient" 24/7 and how you feel about his daughter. I'm sorry she criticises you. I am sure you are doing the best you can. Re-hosting...I had never considered that-but what I do know is that my mother wouldn't want him home with her 24/7. They are not that compatible, and god knows how they've been married all these years, but she does like being home on her own, to some extent-she has her routine...he would drive her crazy if he was home all day (more than she would drive *him* crazy)-she is not that severely impaired....she does repeat herself but can also have decent conversations, and she can with him too (as well as with me) but my father has always put his friends first and his colleagues first...and even me first...before my mum. He always has. As I said in a previous reply...this is more complicated than just "mum with dementia, dad her carer". The history is such that he has never put her first. But I hear you on the "hosts" front and it is of course a possibility, but I think in this case...it's not that. My father's tolerance for anything different to what he wants....is incredibly low. He doesn't know what compromise is. Years ago he would complain that my mum couldn't do this and couldn't do that (walking, as an example and other physical activity) and I'd say "true, but she can do this, and she can do that, i.e., she was able to play cards, and board games)....before the dementia set in. Yet that was not good enough for him. And so even pre-dementia...when she was less mobile than him-he focused only on what she couldn't do...not what she *could* do. It's his way or the highway. He just doesn't compromise. This is where the narcissism is such a big piece in their story.
 

Only_Child

Registered User
May 31, 2024
21
0
London
Brilliant - well done.

Maybe ask him what things you could do to support him/help your mum. He might have some ideas or it might give you more clues as to what things he's struggling with.

Also, if she isn't always remembering to take pills on time, have you thought about getting a 'dosette' box for her meds that sounds an alarm reminder for her to take them? Or could you set up a Zoom/Alexa-thingummy or similar on a laptop so you could 'drop in' and just check on her during the day? Small things like that might give you some reassurance too.
Thanks Jaded....he knows that I'm happy to have my mother visit me whenever either of them wants. I honestly don't think there is anything else I can do from here but I do Facetime her daily-most weeks. I actually want her GP to have the conversation about the pills with her because I broached it and she would not listen...she claims she's always taken them all in the morning....and I know this to be untrue. She takes them all daily, but two should be taken later on in the day-when I mentioned this to her she disagreed. I'll let the GP deal with that-she listens to him, which is good:).
 

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?
Hi again:). Sue-your reply prompted me to phone the Diabetes Association in their area (I found a helpful leaflet online re-diabetes and driving)-published by their State, and spoke to a very helpful woman. I gave her the names of the medication my mother is on and she confirmed that she does not have to check her blood sugars before she gets in the car (which is what the leaflet said)-I believe that recommendation is only re-Type 1 but not Type II diabetes. She did say "only if she has symptoms" should she check her blood sugars and there are guidelines as to what to do, etc. I'm going to have a chat with my mother, in any event because it's important that she knows what to do. Having said all that-she does eat breakfast late, and her drive to her weekly appointment is 15 mins. each way; she's been doing this drive for years and has been diabetic for years-and has been having the same breakfast for years...but still-I appreciate you pointing it out because it's always best to be safe than sorry! Thanks again. xx
 

Only_Child

Registered User
May 31, 2024
21
0
London
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.
 

Only_Child

Registered User
May 31, 2024
21
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London
Hi Ellie-I replied to you yesterday but can't see my reply here so in case it didn't "post"-I wanted to say that I am so sorry to hear about *your* situation and that your husband's daughter is so critical of you. I hear you. I get the fact that unless you are the carer 24/7 it's hard to understand and empathise. My situation is almost the opposite if you like: although my father lives with my mother-he is out of the house as much as possible. So, in effect, he may spend 2-3 hours 1:1 with my mother (usually at dinner in a restaurant), but when they are home evening time-he does his thing, she does hers-often in separate/different rooms. But when she is with me in the UK-despite the fact we only see each other 2-3 times/year...when she stays with me it's 24/7 for 2-4 weeks at a time. I do *everything* for her-2 meals/day and often the 3rd unless we go out for dinner. I ensure she showers, etc. It really highlights that every family situation is different. I also wanted to say re-the hosting query...yes, it is possible that she hosts with me, but actually, I don't think that is what is going on. She *does* engage in conversation with my father when *he* is willing to take the time to talk to her. But he does not make much time to engage in small talk, etc. If anything, I believe she is in hosting when she is at the doctor...and also when out with the rest of the family, i.e., my uncle, cousins. They've often said to me "you'd never know anything was wrong with her tonight". In fact, I spoke to my father yesterday and he said that the night before they went for dinner and "she was fine...she was good". And he uses these examples to pretend in his own head that she's fine-because I don't think he can contemplate the reality. In fact, I asked him yesterday "what are you most worried about" and he said "that we will need to bring in a carer and she hates having people in the house, or put her in a home...and we don't want her to go into a home". He is worried that she will deteriorate and need in-home help-and my mother is not one for in-home help (and I know that she would not want to be in a home and I don't want her going into a home-I have my reasons). And so I said to my father "it will be OK. She won't have a choice if it comes to that-we will need to get someone to come and help her". I did my best to reassure him, and I also said "if I have to come home to take care of her-I will". He knows my mother and she can be difficult as per refusing help. My point is: everybody is different and every one of our circumstances needs to take into account the person we are dealing with. I've had breast cancer and I can say for certain; no two breast cancer patients are the same, and I am also confident that no two dementia patients are the same. And the same goes for the carers, the relationship between the carers, etc.

You mentioned "It’s very lonely when your soul mate of decades doesn’t know how to have a conversation with you and the other side...". My heart breaks for you-it honestly does. My parents were never soul mates. My father chased my mother...he married up, she married down. That's how it is. I don't sugar coat anything, and I know what I know. I am certain that the closer a couple were emotionally pre-dementia, the harder the situation. I also wonder if male carers struggle more than female in that they are not naturally carers. I realise it's an overgeneralisation and there are exceptions to this-there are some excellent male carers and some women for whom this is not their natural calling....but I say this because my father *is* struggling because a) he is not a natural carer (not towards my mother-due to their dynamics and history) and b) they were never soul mates. They married in an era where you married the first person you dated.

I am very happy to hear that you've sought counselling and are on medication-again, this is more common for women-we are better at going to the GP and asking for help. I wish my father would see someone (therapist/counsellor) to talk to. He refuses to attend a support group and as far as I can see-he is playing down the severity of her illness....and I fear that this is putting *her* at risk.

I tried to pick up on what he said yesterday re-his worry that he'll need to bring in a carer...I said "if you can start to ensure she eats lunch....that can help slow this down". I've read enough to understand that eating and drinking enough water are two things that can help combat and slow this thing down. My biggest concern is that she often goes 6-7 hours without eating. He knows this. He does nothing about it other than phone her to remind her-which I've tried to explain to him is not enough. I'm repeating myself. All this to say that as frustrating as it is being the carer (you), it's also frustrating watching from the sidelines, the main carer not doing what is necessary to ensure that the dementia patient is eating during the day. I can see myself taking a year off and moving back to their city. The more I think about what is going on there-the angrier and more frustrated I feel.

Sending you my very best wishes....I can understand your frustration, having to come to terms with the loss of the man you married. It's not easy, and as they say-you grieve twice (perhaps more than twice) when the person you love has dementia. xxxx
 
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maggie6445

Registered User
Dec 29, 2023
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Sorry, but if she can no longer do the laundry how on earth can she safely drive a car?

The other day I was trying to get out of a car parking space. An Elderly lady pulled up in front of me, indicator on ,wanting the space. Well... I guess her family thinks she's ok to drive,no scratches on the car , but her thinking skill and logic beggered belief! She just did not understand where she had stopped in her determination to have the space,no one else around competing, was preventing me getting out.

In the end I had to get out and tell her how to position the car and her look and lack of awareness concerned me.

Eventually I got out of the space and I pulled in to watch her. She shunted back and forth and I was really concerned about her driving

No doubt her family will think she's ok. She most definitely isn't. I think any driver following this lady would have to be anticipating her next silly move.

Just because a pwd comes home ,car in tact, doesn't mean they are safe to drive!
 

Only_Child

Registered User
May 31, 2024
21
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London
Sorry, but if she can no longer do the laundry how on earth can she safely drive a car?

The other day I was trying to get out of a car parking space. An Elderly lady pulled up in front of me, indicator on ,wanting the space. Well... I guess her family thinks she's ok to drive,no scratches on the car , but her thinking skill and logic beggered belief! She just did not understand where she had stopped in her determination to have the space,no one else around competing, was preventing me getting out.

In the end I had to get out and tell her how to position the car and her look and lack of awareness concerned me.

Eventually I got out of the space and I pulled in to watch her. She shunted back and forth and I was really concerned about her driving

No doubt her family will think she's ok. She most definitely isn't. I think any driver following this lady would have to be anticipating her next silly move.

Just because a pwd comes home ,car in tact, doesn't mean they are safe to drive!
Hi Maggie,

Thank you for your input. Where did I say that my mother cannot do laundry? She *does* do the laundry.
And I do hear you on the driving front, and my father has assured me that she is OK. However, when I am next in town I *will* get into the car with her and assess this for myself.
 

maggie6445

Registered User
Dec 29, 2023
1,586
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Hi Maggie,

Thank you for your input. Where did I say that my mother cannot do laundry? She *does* do the laundry.
And I do hear you on the driving front, and my father has assured me that she is OK. However, when I am next in town I *will* get into the car with her and assess this for myself.
@Only_Child , sorry I misread your post about the laundry
 

Only_Child

Registered User
May 31, 2024
21
0
London
I just wanted to share an update: I spoke to my father this afternoon and let him know that I've been thinking about taking some time out (a Sabbatical) and coming home (to where they live/I was born) to spend more time with my mother-in a nutshell a) to provide her with the mental stimulation she isn't getting from my father, who goes to work 9-6PM *out of choice* b) to provide her with the company she needs (she's early-middle stages so she is very aware of what is going on around her) and c) to ease my own angst...I feel helpless and anxious being so far away from her. When I broached the idea with him, I explained that it would mean I need to stop working (temporarily-for the time I am there, i.e., 6 months, 1 year, etc). The idea would be that I would be my mother's carer. He was very supportive, saying "don't worry-I will support you". To an outsider, this would seem like a generous offer-but the fact that I will have to put my own business on hold (I love my work and it took long to build my practice) (so that he doesn't have to reduce his hours-he never would anyhow)! doesn't occur to him. My father thinks money is the answer to everything. And so then when I broached the possibility of moving in with them (as opposed to getting my own apartment-which he was dead against), my father was over the moon. He thinks it's a wonderful idea. I know my father-he wants me home for his own reasons. What he isn't considering (and didn't convey at all) is how difficult it will be to not have my own space, privacy, etc. I'm 57. They live in a condo/apartment-very open plan. The room I'd sleep in is their "den". I no longer have a bedroom there. I am very anxious at the prospect of living with my *father* because he and I clash-he does not talk to my mother respectfully and is very blaming and shaming and I can see us falling out *a lot*. The only other option is to rent an Air Bnb (he said it's difficult to find a furnished apartment to rent)-I know that it isn't-but they may be costly. If I was to factor my father out of the equation and it was just me and my mother-I'd have no hesitation moving in with her-I'd then be able to structure her day, eat breakfast, lunch and dinner with her, and ensure she is eating well and getting enough mental stimulation-my main reasons for considering moving home. It would be less practical (and may possibly defeat the purpose) if I were to live in my own apartment, because I would want to be there with her from early morning to try and get her into a better routine...she wakes up late and has a late breakfast and is diabetic. Though her blood sugar readings are good, I know that she can be doing better/adhering to a better routine. This is why I want to move home for a period of time. Having said all that-the thought of living with my father (narcissist) is filling me with dread. He is a control freak, he lacks empathy and he would see this a "carte blanche" to go out, and be even less attentive to my mother's needs than he is now. When I raised my "privacy" concern to him, he said "I'm out all day and only come home late...we eat and I go to bed early", I actually said "if I do move home I'd like you to join in with me and mummy and play games, i.e., cards, board games", etc. I was trying to explain that the whole purpose of me coming home is to set up a routine for her, but also for *them* so that when I leave, he can carry it on-I said to him "your relationship is not great"-he spends no time with my mother....hence why I feel that she needs me there. But I won't be staying indefinitely. My hope is to get them into a routine where they continue playing cards or what-not in the evening, once I've left. He did agree (in theory) but I know my father-I'll arrive home, suitcase in tow, and he'll ****** off to his room while my mother and I do something together. He just neglects her....he works all day, comes home and they have dinner together (in or out) and he then goes to his bedroom, watches TV and goes to sleep. She stays up until 11PM or midnight playing solitaire. From what I've read, it is important for dementia patients to have a bedtime routine so I'm hoping that if I do follow through on this very preliminary plan-I can encourage her to go to sleep earlier, and wake her earlier to have breakfast with me. It will be a lot harder for me to do that in *her* home-because she has her own routine in her own home, whereas when she was visiting me in the UK she adhered to my routine-which was good for her....breakfast, lunch, dinner, earlier bedtime, earlier wake time. It's a lot easier to impose changes and "rules" (as she calls them) in your own house than in someone else's. All this to say that I've realised that although my preference would be to have her here with me in the UK (I'd be able to work/earn an income) and it's easier for me to implement changes to her routine, I do think that she is better off in her own home...I just hope that if I do decide to take a Sabbatical and take 3/6/12 months off work to move back home with them-it isn't all for nothing. I want to introduce certain changes to her meal times, etc. which she may or may not be in agreement with:). It's all a risk. If nothing else, I will benefit from some quality time with her that I feel is very precious right now-but I *would* be putting my practice on hold, and opening myself up to being a victim to my father's narcissistic abuse (and unless you actually have a narcissistic in your close circle-you have no idea how damaging they can be to one's self-esteem, confidence, and mental health). Above all, I want to do right by my mother and spend as much time with *her* as possible.

Please note-I will be travelling tomorrow so if I'm a few days late in replying to any messages-that will be why:).
 

helpingpeggy

Registered User
Aug 6, 2019
81
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Just a quick observation: you’re hoping that you can change your father’s behaviour and habits whilst you’re with them and going forward once you’ve returned home. It sounds very unlikely that he’s going to change at all. Maybe you need to accept that you can’t change him and work on from there. Maybe look to find someone else to spend the time with your mum that you wish your father would. A paid befriender?
 

Only_Child

Registered User
May 31, 2024
21
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London
Just a quick observation: you’re hoping that you can change your father’s behaviour and habits whilst you’re with them and going forward once you’ve returned home. It sounds very unlikely that he’s going to change at all. Maybe you need to accept that you can’t change him and work on from there. Maybe look to find someone else to spend the time with your mum that you wish your father would. A paid befriender?
Hi Peggy, thank you for your reply. My mother would not be interested in anybody coming into the house to spend time with her on a permanent basis-in fact, I *had* spoken to one of her nieces (my cousin) recently who arranged with my mother a visit to my parent's house for lunch-my mother cancelled. At the moment, my mother is not herself-at all....mood wise. She feels low/depressed and doesn't have any motivation/interest in anybody other than spending time with me. She had even declined a recent invitation out for lunch with my father (he has finally made an effort-just last week). I strongly believe that it's too little, too late. The damage is already done. This is more than a dementia story. It's a story about a dysfunctional marriage, a narcissistic husband & a woman who has felt so ignored/discarded by her Narc. husband that she now also has depression. It's complicated. My mother claims she is happy in her own company...when I've suggested she go out with (anybody)...but I know that she is *not* happy. Because on other days she'll tell me (and my cousin) how she is bored with her life and doesn't have anything exciting going on. It's all true. She still has her wits about her enough to decline any help at home, be it a befriender, or what-not. It's not something I wish to force on her. At least-not at this stage of the illness.

I do agree with you in that my father won't (easily) change but he did make an effort this past week, though as above, I fear it's all too late. My mother is intelligent-always was-and she even said to me something to the effect "I don't think he really wants to spend more time with me"-and then she asks in a roundabout way...."did you put him up to this"? She is very sharp...in the moment. Yes, she will fail to remember what I said 10 mins. later...but in the moment-she is sharp and knows exactly what is going on. It's all very sad and I wouldn't wish this disease on anyone. And contrary to what everyone says-it *is* as hard for the patient/sufferer as much as it is on the relatives/carers. Because they *know* what is going on, and yet they are helpless to change the way their brain processes information. :(
 

Collywobbles

Registered User
Feb 27, 2018
409
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Because on other days she'll tell me (and my cousin) how she is bored with her life and doesn't have anything exciting going on. It's all true.
….
I think it’s different for everyone really. My Mum says she’s bored whenever she’s asked how she feels. But that’s because she doesn’t remember having gone out for a meal, had lots of visitors, or had a pampering session at the hairdressers (all things she’d have enjoyed while they were happening).

And contrary to what everyone says-it *is* as hard for the patient/sufferer as much as it is on the relatives/carers. Because they *know* what is going on, and yet they are helpless to change the way their brain processes information. :(
This was true of my Mum, but only in the early stages. She knew there was something not right, but struggled to make sense of what was going on. This was when she started inventing imaginary burglars and ‘the man who lived in the attic’, who kept moving her things around and hiding them. Now she’s further along, she has absolutely no insight into the fact that there’s anything wrong with her at all. While that means she’s generally happier in herself, it means that she refuses to engage with dementia or Alzheimer’s services because they don’t apply to her.

While there are always common themes, I’m coming to believe that there are as many different manifestations of dementia, as there are people with it. And these will change over time. The rules are there are no rules. I wish!
 

Only_Child

Registered User
May 31, 2024
21
0
London
I think it’s different for everyone really. My Mum says she’s bored whenever she’s asked how she feels. But that’s because she doesn’t remember having gone out for a meal, had lots of visitors, or had a pampering session at the hairdressers (all things she’d have enjoyed while they were happening).


This was true of my Mum, but only in the early stages. She knew there was something not right, but struggled to make sense of what was going on. This was when she started inventing imaginary burglars and ‘the man who lived in the attic’, who kept moving her things around and hiding them. Now she’s further along, she has absolutely no insight into the fact that there’s anything wrong with her at all. While that means she’s generally happier in herself, it means that she refuses to engage with dementia or Alzheimer’s services because they don’t apply to her.

While there are always common themes, I’m coming to believe that there are as many different manifestations of dementia, as there are people with it. And these will change over time. The rules are there are no rules. I wish!
Hi Collywobbles-I couldn't agree with you more re: "I’m coming to believe that there are as many different manifestations of dementia, as there are people with it". 100% truth!

I hear you re-your mum and her saying how bored she is despite having done a few nice things, had visitors but forgetting that all of the above happened. My mother's life really *isn't* too exciting (and so her assessment there is accurate)-she never has visitors, rarely has phone calls, and goes to the hairdresser once/week-that's her outing. And she doesn't really enjoy the outing-she just likes the outcome....nice hair:). I am certain that she is depressed, and I am also certain that her confidence in getting around by car has diminished & so she only goes to her hair appointment (and to have her nails done every 2-3 weeks) because she's been going there for years.

I'm sorry to hear your mum is further down the line now and has no insight into there being anything wrong-as you rightly say-that comes with + and -. It's a very difficult situation to navigate and I agree with you wholeheartedly that there are common themes and comon symptoms, but when it comes to putting into practice an action plan, etc. and a way of managing our unique situations-so many other factors need to be taken into account too, i.e., stage of the illness, the wishes of the person with the illness, personality characteristics and their entire support system (or lack of). It's not easy, that's for sure:).