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Exhausted

Henny2020

New member
Jan 16, 2020
9
0
I am my mothers carer, and I am at the end of my tether and feeling on the verge of weeping throughout the day.
She shouts at me, has tantrums like a child, is refusing to eat anything substantial, moans all day long, and this is all in the early stages of dementia.
I am unable to watch anything on TV as she dictates watch we watch, she doesn’t like anything and so there is the same fruitless search for something each evening, she shouts of the dogs and nothing I do is good enough, ever.
I feel so isolated.
 

Bunpoots

Volunteer Host
Apr 1, 2016
6,281
0
Nottinghamshire
Hi @Henny2020

I think the early stages can be the most challenging in some ways. The person has lost empathy but seem perfectly ok to outsiders so no one quite understands how wearing it can be!

Have you got any outside help coming in? I found this made a massive difference for me while I was looking after my dad. Physically I was capable of doing everything he needed help with but mentally - it drove me crazy!

I didn't live with my dad so I could go home in the evening and de-stress it must be so much worse if you don't get a break. It's well worth getting a needs assessment for both your mum and yourself from SS if you haven't already. They may be able to offer something to help.
 

Agzy

Registered User
Nov 16, 2016
2,383
0
Moreton, Wirral. UK.
I am my mothers carer, and I am at the end of my tether and feeling on the verge of weeping throughout the day.
She shouts at me, has tantrums like a child, is refusing to eat anything substantial, moans all day long, and this is all in the early stages of dementia.
I am unable to watch anything on TV as she dictates watch we watch, she doesn’t like anything and so there is the same fruitless search for something each evening, she shouts of the dogs and nothing I do is good enough, ever.
I feel so isolated.
Am so with you on this @Henny2020 as my partner also has total control of TV remote and for her and therefore me it is constant repeats of previous repeated programmes via, Drama, Alibi and ITV3 channels coupled with the various series such as the crown and Downton. These I put on Netflix etc to placate and keep her company when I need to go out as they roll on through the episodes automatically But yes, life is exhausting.
 

MartinWL

Registered User
Jun 12, 2020
1,973
0
65
London
Could you have a TV in another room? Not a full solution of course but perhaps a help.

Has your mum got to the stage where she cannot be reasoned with? I am wondering whether threats of leaving her to her own devices might work.
 

lollyc

Registered User
Sep 9, 2020
777
0
I am my mothers carer, and I am at the end of my tether and feeling on the verge of weeping throughout the day.
She shouts at me, has tantrums like a child, is refusing to eat anything substantial, moans all day long, and this is all in the early stages of dementia.
I am unable to watch anything on TV as she dictates watch we watch, she doesn’t like anything and so there is the same fruitless search for something each evening, she shouts of the dogs and nothing I do is good enough, ever.
I feel so isolated.
Hello @Henny2020 - I have spent the last 4 years with no control over what is on the TV, so I feel your pain. I couldn't watch in another room, because I was constanlty called upon to perform "important" tasks - finding a dropped item / glasses / a tissue...
Pre Covid my Mum was able to attend a variety of groups, which provided activities and a lunch, and gave me a break of about 3 or 4 hours. I realise that things are difficult at the moment, but it may be worth finding out what is available in your area. Look beyond the dementia charity websites, as some of the small commuity run groups don't get on these lists. I never gave Mum an option of going / not going, I simply told her she had to try everything and then we would review (never say she won't have to go if she doesn't like it - that's asking for trouble!) Not everything worked, but most things did, and she actually enjoyed going.
Our road to hell lasted 5 years, with Mum living with me for 4 - as others have said, this is a marathon, not a sprint, and you need to consider your needs in this too.
 

Lawson58

Registered User
Aug 1, 2014
2,790
0
Victoria, Australia
If your mum is having tantrums and behaving like a child, why not use strategies that many parents use when facing behaviour like this?

I don’t mean that you disrespect her or treat her as if she is a child. However, walking away when she has a tantrum, go out of the room when she is moaning, take the dogs out for a short walk when she shouts at them are all little things that might help.

I think much of this sort of behaviour is manipulative and probably attention seeking because she is probably needing reassurance. But as this is the early stages, there is a possibility that this sort of thing might work and over time may get the message through to her.
 

Violet Jane

Registered User
Aug 23, 2021
782
0
Are you able to leave your mother for any length of time safety-wise? If so, try to get out of the house and meet a friend / go for a walk or swim / go for a coffee. Even if she objects I would still go if you think that it’s safe to leave her and she won’t be excessively anxious. Is a sitter a possibility? Sitting services are offered by Age UK and some other charities and also by care agencies.

As Martin says, a television in another room might be a solution.
 

SERENA50

Registered User
Jan 17, 2018
107
0
Hi @Henny2020

I think the early stages can be the most challenging in some ways. The person has lost empathy but seem perfectly ok to outsiders so no one quite understands how wearing it can be!

Have you got any outside help coming in? I found this made a massive difference for me while I was looking after my dad. Physically I was capable of doing everything he needed help with but mentally - it drove me crazy!

I didn't live with my dad so I could go home in the evening and de-stress it must be so much worse if you don't get a break. It's well worth getting a needs assessment for both your mum and yourself from SS if you haven't already. They may be able to offer something to help.
Hi

I definitely agree with you. Unless you really know our Dad , he looks fine, he is different with his friends/relatives than with us. They are not the ones who get a text to say not to worry but....and then decide who needs to go round and find out whats going on, both of us are still working at the moment as well and I live about 45 mins away. We provided all sorts of things to help with mobility only to go the next day and everything has been put away as if there is no issue at all. You cannot reason of course because the mind isn't able to but it takes you a while to realise these things yourself . I have sometimes come home in tears. I agree with you about empathy as well.
 

Henny2020

New member
Jan 16, 2020
9
0
Hi @Henny2020

I think the early stages can be the most challenging in some ways. The person has lost empathy but seem perfectly ok to outsiders so no one quite understands how wearing it can be!

Have you got any outside help coming in? I found this made a massive difference for me while I was looking after my dad. Physically I was capable of doing everything he needed help with but mentally - it drove me crazy!

I didn't live with my dad so I could go home in the evening and de-stress it must be so much worse if you don't get a break. It's well worth getting a needs assessment for both your mum and yourself from SS if you haven't already. They may be able to offer something to help.
That’s part of the problem, she is totally irascible and mean spirited with me, but sunshine and light to everyone else, so no one understands my frustrations, mind you, it’s a reflection of our life long relationship, just many times worse.
She won’t accept help from anyone, sadly I administer all her medication. She says she can manage when I do have to go out, but I couldn’t leave her for too long. If carers came to the door she would turn them away.
It’s a long road ahead of that there is no doubt.
Thank you for replying.
 

Henny2020

New member
Jan 16, 2020
9
0
Are you able to leave your mother for any length of time safety-wise? If so, try to get out of the house and meet a friend / go for a walk or swim / go for a coffee. Even if she objects I would still go if you think that it’s safe to leave her and she won’t be excessively anxious. Is a sitter a possibility? Sitting services are offered by Age UK and some other charities and also by care agencies.

As Martin says, a television in another room might be a solution.
Hi,
Thankfully I have dogs so can escape in the afternoon briefly into the open air, it’s probably the only thing keeping me sane right now!
 

Henny2020

New member
Jan 16, 2020
9
0
Hi

I definitely agree with you. Unless you really know our Dad , he looks fine, he is different with his friends/relatives than with us. They are not the ones who get a text to say not to worry but....and then decide who needs to go round and find out whats going on, both of us are still working at the moment as well and I live about 45 mins away. We provided all sorts of things to help with mobility only to go the next day and everything has been put away as if there is no issue at all. You cannot reason of course because the mind isn't able to but it takes you a while to realise these things yourself . I have sometimes come home in tears. I agree with you about empathy as well.
This echoes the relationship I have with my father, who lives about 30 minutes away, he gives the appearance that he’s listening but he will come to a completely different conclusion about what was said than you, he won’t accept any help either, it’s a miricle my hair isn’t completely grey!
 

Henny2020

New member
Jan 16, 2020
9
0
Could you have a TV in another room? Not a full solution of course but perhaps a help.

Has your mum got to the stage where she cannot be reasoned with? I am wondering whether threats of leaving her to her own devices might work.
Hi Martin,
I do have my own TV, but then get guilt tripped if she thinks I’m watching TV by myself.
In fairness to my mother she is narcissistic and I have never been able to reason with her.
I am mindful how difficult it must be for her, frightening, confusing, but it’s still difficult being on the end of all that frustration and rage, because she is so self centred she doesn’t care how it impacts me.
 

Henny2020

New member
Jan 16, 2020
9
0
Thank you all for replying, I was quite taken aback with all the responses, such a relief to have people listen to me and talk back with a shared experience.
 

SERENA50

Registered User
Jan 17, 2018
107
0
This echoes the relationship I have with my father, who lives about 30 minutes away, he gives the appearance that he’s listening but he will come to a completely different conclusion about what was said than you, he won’t accept any help either, it’s a miricle my hair isn’t completely grey!
Hi My hair is grey resorted to hair dye lol .x
 

JanBWiltshire

Registered User
Jun 23, 2020
157
0
Hi Martin,
I do have my own TV, but then get guilt tripped if she thinks I’m watching TV by myself.
In fairness to my mother she is narcissistic and I have never been able to reason with her.
I am mindful how difficult it must be for her, frightening, confusing, but it’s still difficult being on the end of all that frustration and rage, because she is so self centred she doesn’t care how it impacts me.
I know exactly how you feel, having a narcissistic mother with dementia myself….it is a toxic combination! I found googling those search terms unearthed some really helpful advice and anecdotes. You Tube also has a few videos by experts and it helped me realise my mother’s behaviour isn’t my imagination. She is the best “showtimer” which was always frustrating because very few outsiders could see what she was really like. Hope you can find a way to dilute the situation and find a better balance.
 

Muttimuggle

Registered User
Dec 28, 2021
191
0
I am my mothers carer, and I am at the end of my tether and feeling on the verge of weeping throughout the day.
She shouts at me, has tantrums like a child, is refusing to eat anything substantial, moans all day long, and this is all in the early stages of dementia.
I am unable to watch anything on TV as she dictates watch we watch, she doesn’t like anything and so there is the same fruitless search for something each evening, she shouts of the dogs and nothing I do is good enough, ever.
I feel so isolated.
I so much empathise with you here and also find what Bunpoots said so reassuring....and several others on this thread have said similar things. There have been so many times when i have thought it has been me who is the problem maker - especially since my brother has always been in denial and has reassured her that she is fine and doing everything just great(this is the brother who spends months out of the country and unavailable!) At least for me I do not live with her. In her mind the carers all "don't do very much" or "aren't very good". She is actually trying very hard to keep being and doing herself and this is probably her way to try to have some control over a chaotic feeling inside. My mother watches, all of the time, back to back episodes of Judge Judy. I am sure she cannot understand it all but identifies with a previous controlling self(somewhat like Judge Judy) or something like that. I write her notes about how to do things in big dark lettering(because her eyes are also a problem- in her mind possibly her main problem) but she throws my notes away. Then she tell me she "can't see very well you know" even though yesterday and the day before that and the day before that I told her(and practised with her) every time she needs to read something it is 1) go to room with special lamp 2) put on glasses 3) point lamp to what you need to see......she still phoned me yesterday and said " I can't see things you know". In this instance it was the "left" and "right" written on her support stockings. I haven't got time today to sew left and right in today so I am going to try with another simplified instruction note. I have ended up shouting at her when she throws things away which I have tried to provide for help. I do understand your frustration - with my mother there is some new thing every day which I get drawn into. It is my sense of duty(sometimes feels like only that) which draws me on.
 

DBS16

New member
Jan 19, 2022
8
0
I am my mothers carer, and I am at the end of my tether and feeling on the verge of weeping throughout the day.
She shouts at me, has tantrums like a child, is refusing to eat anything substantial, moans all day long, and this is all in the early stages of dementia.
I am unable to watch anything on TV as she dictates watch we watch, she doesn’t like anything and so there is the same fruitless search for something each evening, she shouts of the dogs and nothing I do is good enough, ever.
I feel so isolated.
I so appreciated what your going through. I too hardly ever watch what I want on the TV. My husband says choose but then moans about whatever it is. I have to watch Blue Bloods, Vera, Midsummer Murders, and Dad's Army . I also find that I am forever explaining the plot and who is who? If I leave the room; maybe to do some paperwork or even read, he follows me. I am only alone in the bathroom (providing I don't take too long). I just wish someone could tell you how long this journey takes.? I never thought I would say that. Anyway Henry, chin up, know your not alone. We find the strength I guess. Good luck
 

taliahad

Registered User
Nov 22, 2021
51
0
Go to your doctor and ask for some medication. I could not manage my mother had the doctor not prescribed risperidone. He was initially reluctant to prescribe anything, he said it would shorten her life but after one week of taking over mother's care, I rang him up in tears and said that I didn't care if it shortened her life, I needed help and she needed help and life as it was, was not worth living, not for her and not for those caring for her. Risperidone has helped a lot and we all now have a better quality of life, it's far from perfect but it's better. IMO quality is better than quantity and we carers are just as important, in fact more important than our PWD , as much as we love them.
 

DBS16

New member
Jan 19, 2022
8
0
Wow, thank you. I didn't know there was medical help. I can't say I'm ready for it - stupid me. I know that I would have to ask the doctor privately and it doesn't sit well to go behind his back because I know he just wouldn't accept it.
But thank you again so much for that information. Glad to hear though that it has brought some calm to your both your lives. Keep well.
 

Violet Jane

Registered User
Aug 23, 2021
782
0
I'm afraid that doctors are not very forthcoming about the availability of medication to treat difficult behaviour associated with dementia eg agitation, restlessness and aggression. Carers are just supposed to put up with it. There are actually several medications available but sometimes you have to really push for them or threaten to walk away from caring before they are prescribed.