first time user

[ikky]

Hi, I'm ikky
This is the first time I've used this or any other forum and I'm not really sure that what I am about to write is what is acceptable but here goes.
My husband has frontotemporal dementia. He's had this problem for around 9 years now but it was only diagnosed this year. I understand that this is because it is a rare form and even some health professionals don't know about it. I am his sole carer and am finding his behaviour very difficult to cope with. He has no empathy which always makes him appear uncaring and this is very difficult to cope with. Last week I just could not cope anymore and he went for respite for the first time. I was so upset yet he just seemed to relish sitting, reading his book and being waited upon. He has been unpleasant since he got back 4 days ago, I've read enough to know that this may happen but it doesn't make it any easier I feel so bad about the way I am feeling and don't know how to handle things. I try to keep him doing things to give him a better quality of life and he throws them back in my face by saying I'm pushing and he wont go, then he wants to "be with me and do things together" How do you cope with this. I get fed up with people telling me "it's my choice" I don't find it helpful, it's a vicious circle. Is anyone reading this who has felt the same? what did you do, please help

 

[Tin]

Hi, I'm ikky
This is the first time I've used this or any other forum and I'm not really sure that what I am about to write is what is acceptable but here goes.
My husband has frontotemporal dementia. He's had this problem for around 9 years now but it was only diagnosed this year. I understand that this is because it is a rare form and even some health professionals don't know about it. I am his sole carer and am finding his behaviour very difficult to cope with. He has no empathy which always makes him appear uncaring and this is very difficult to cope with. Last week I just could not cope anymore and he went for respite for the first time. I was so upset yet he just seemed to relish sitting, reading his book and being waited upon. He has been unpleasant since he got back 4 days ago, I've read enough to know that this may happen but it doesn't make it any easier I feel so bad about the way I am feeling and don't know how to handle things. I try to keep him doing things to give him a better quality of life and he throws them back in my face by saying I'm pushing and he wont go, then he wants to "be with me and do things together" How do you cope with this. I get fed up with people telling me "it's my choice" I don't find it helpful, it's a vicious circle. Is anyone reading this who has felt the same? what did you do, please help

morning Ikky, Not sure what form of dementia my mum has, we're a week away from final diagnosis. Her "contrary" behaviour sometimes gets me down, I try every day to keep a connection with her. I no longer care about other peoples opinion I love my mum and like you want to give her some quality of life. So I have felt the same as you, afraid I have no answers, I just keep on going. take care and try to have a restful sunday.

 

[Sringtime]

Hi, I'm ikky
This is the first time I've used this or any other forum and I'm not really sure that what I am about to write is what is acceptable but here goes.
My husband has frontotemporal dementia. He's had this problem for around 9 years now but it was only diagnosed this year. I understand that this is because it is a rare form and even some health professionals don't know about it. I am his sole carer and am finding his behaviour very difficult to cope with. He has no empathy which always makes him appear uncaring and this is very difficult to cope with. Last week I just could not cope anymore and he went for respite for the first time. I was so upset yet he just seemed to relish sitting, reading his book and being waited upon. He has been unpleasant since he got back 4 days ago, I've read enough to know that this may happen but it doesn't make it any easier I feel so bad about the way I am feeling and don't know how to handle things. I try to keep him doing things to give him a better quality of life and he throws them back in my face by saying I'm pushing and he wont go, then he wants to "be with me and do things together" How do you cope with this. I get fed up with people telling me "it's my choice" I don't find it helpful, it's a vicious circle. Is anyone reading this who has felt the same? what did you do, please help

Hi Ikky, Sorry that you are feeling this way. I cant give you any advice as I have no experience of what you are going through but I am sure there are many on here that have had similar experiences. Sending you a hug. xx

 

[ikky]

Hi Ikky, Sorry that you are feeling this way. I cant give you any advice as I have no experience of what you are going through but I am sure there are many on here that have had similar experiences. Sending you a hug. xx

Thank you for the hug. It's just what I need.
Ikky

 

[angiebails]

I am waiting for a formal diagnosis and we have just got back from the MRI brain scan. I have a husband who has treated me terribly since April when in his mind he decided I had had an affair and he won't let it drop. His behaviour to me is sometimes absolutely terrible as he blames me for all the mistakes he makes now that he can't do what he used to. It's great advice when every tells you to carry on as normal and let him do as much as possible but they aren't there to pick up the pieces when he has attempted very mundane tasks but then lost his temper because he couldn't do it and of course the reason he couldn't do it was my fault for telling him what to do or trying to help him. The aggression he shows is quite frightening. He used to go in stages of loving me to bits because I do so much to help to hating me for making his life a misery. Now we don't see many of the loving days. We have to find a reason to carry on and I hope you find the support from the forum a small comfort like I do to know I am not the only one to wonder why we have to get out of bed each not knowing what awaits us.
Angela.


Sent from my iPad using Talking Point

 

[Chuggalug]

Hi, I'm ikky
This is the first time I've used this or any other forum and I'm not really sure that what I am about to write is what is acceptable but here goes.
My husband has frontotemporal dementia. He's had this problem for around 9 years now but it was only diagnosed this year. I understand that this is because it is a rare form and even some health professionals don't know about it. I am his sole carer and am finding his behaviour very difficult to cope with. He has no empathy which always makes him appear uncaring and this is very difficult to cope with. Last week I just could not cope anymore and he went for respite for the first time. I was so upset yet he just seemed to relish sitting, reading his book and being waited upon. He has been unpleasant since he got back 4 days ago, I've read enough to know that this may happen but it doesn't make it any easier I feel so bad about the way I am feeling and don't know how to handle things. I try to keep him doing things to give him a better quality of life and he throws them back in my face by saying I'm pushing and he wont go, then he wants to "be with me and do things together" How do you cope with this. I get fed up with people telling me "it's my choice" I don't find it helpful, it's a vicious circle. Is anyone reading this who has felt the same? what did you do, please help

Hello ikky,

Yeah, I know about the empathy thing, or lack thereof. That a toughie to live alongside.

I've tried to get my husband to go out occasionally, but he never wants to and has been that way for as long as I can remember, so I don't push it any more.

Who is it who tells you "it's your choice"? How cruel Nothing about any of this is anything we choose. Don't worry ikky. Nobody will say those kinds of things on here. I've had to grit my teeth through so many platitudes that I no longer talk to people who don't understand what caring for this condition involves. I won't set myself up for callous remarks any more. Learned that lesson, but it took a few years before I did, sigh...

Will you get any further respite breaks? Here's wishing you strength, and love to your loved one as well.

 

[ikky]

I am waiting for a formal diagnosis and we have just got back from the MRI brain scan. I have a husband who has treated me terribly since April when in his mind he decided I had had an affair and he won't let it drop. His behaviour to me is sometimes absolutely terrible as he blames me for all the mistakes he makes now that he can't do what he used to. It's great advice when every tells you to carry on as normal and let him do as much as possible but they aren't there to pick up the pieces when he has attempted very mundane tasks but then lost his temper because he couldn't do it and of course the reason he couldn't do it was my fault for telling him what to do or trying to help him. The aggression he shows is quite frightening. He used to go in stages of loving me to bits because I do so much to help to hating me for making his life a misery. Now we don't see many of the loving days. We have to find a reason to carry on and I hope you find the support from the forum a small comfort like I do to know I am not the only one to wonder why we have to get out of bed each not knowing what awaits us.
Angela.


Sent from my iPad using Talking Point

Hi Angela
Thanks for the reply, everything you say rings so true for me and my situation. I feel without empathy there can be no relationship. it's just you living with an illness not a husband. Try to help and support them and " they can do it/yes they know " let them get on with it and when they can't you are told " you should tell/help me. you've got a brain, you know " My husband throws things about to prove his point!? Yes, it is scary but I always try not to let him see I'm afraid. It's sad to know that you are going through what I am but at the same time it's nice to talk to someone who understands
Ikky

 

[ikky]

Hello ikky,

Yeah, I know about the empathy thing, or lack thereof. That a toughie to live alongside.

I've tried to get my husband to go out occasionally, but he never wants to and has been that way for as long as I can remember, so I don't push it any more.

Who is it who tells you "it's your choice"? How cruel Nothing about any of this is anything we choose. Don't worry ikky. Nobody will say those kinds of things on here. I've had to grit my teeth through so many platitudes that I no longer talk to people who don't understand what caring for this condition involves. I won't set myself up for callous remarks any more. Learned that lesson, but it took a few years before I did, sigh...

Will you get any further respite breaks? Here's wishing you strength, and love to your loved one as well.

Hi
A social worker told me for one! Also when I asked for help she said she saw it as a domestic issue, I'd just had one break and I should do what anyone else would do if they couldn't cope with their husband and that was to leave him. I was very upset and told the psychologist who sees him. She was furious and spoke to social services about it. She arranged for my husband to go back into a care home today, which I feel guilty about, but as I now have pleurisy and a chest infection I am just not well enough to cope she says on top of all that's been happening. Lets hope that when he comes home this time it will be the fresh start I wanted it to be the first time.
How do you begin to decide who to tell and talk to about your partner having dementia, I've told my closest friends ( one didn't want to know), my husband doesn't want anyone to know.
Ikky

 

[MLM]

I cannot believe a social worker could be so cruel and insensitive! I'm a student social worker and I could never ever say such a thing to someone! It probably says something about their own relationships if they feel that is how they would respond to the situation if it was happening to them.

Not all social workers have that attitude. Please complain if social workers make such heartless remarks that are based on their opinions/values. They are not there for that purpose, they are there to support you, assess you and help you to access the services you require. If they aren't supporting you to have a positive life with your loved ones then complain and request a new social worker. Or at least request a new one if you aren't confident to complain. You shouldn't have to explain your reason for the request. And believe me, their managers won't (shouldn't) be happy because the aim is to support carers because it saves money (from a political/economic point of view, not from mine or other good social worker's point of view).

Why do people who lack empathy even do the job?!

 

[angiebails]

Yesterday we went out for a bike ride and one minute my OH was behind me the next I heard his head hitting the road. Again I was left to cope alone as the cars that witnessed it drove off and I had to pick him up and get him to hospital alone. We we're trying to carry on the things that he could still do like biking but now I feel guilty for the accident as I do not know what happened. The consultants tell you to carry on as normal but when you have to do it alone it's hard. His son heard and rang for the first time in 2 months then told me to text him to let him know how he was because he worried. ( he wasn't going to ring again) Luckily he was wearing a helmet which took the brunt of the fall and the ct scan showed no bleeding. But I feel for all the people that are in the same boat caring for a husband who gives no love back and yet we try so hard to give them a normal life.
Today he hasn't got out of bed. He was so shocked he couldn't remember what happened.



Sent from my iPad using Talking Point

 

[Chuggalug]

Hi
A social worker told me for one! Also when I asked for help she said she saw it as a domestic issue, I'd just had one break and I should do what anyone else would do if they couldn't cope with their husband and that was to leave him. I was very upset and told the psychologist who sees him. She was furious and spoke to social services about it. She arranged for my husband to go back into a care home today, which I feel guilty about, but as I now have pleurisy and a chest infection I am just not well enough to cope she says on top of all that's been happening. Lets hope that when he comes home this time it will be the fresh start I wanted it to be the first time.
How do you begin to decide who to tell and talk to about your partner having dementia, I've told my closest friends ( one didn't want to know), my husband doesn't want anyone to know.
Ikky

Don't tell me you were left with a number for Domestic Violence like I was! Then, when I tried to ring it, after having to, for days on end, muster up the courage to ring in the first place; upon calling, finding that the phone is never answered. (Tried at least three different numbers I found on the Internet). And that was only the beginning of everything else that happened.

As for telling anyone, he got right 'up in the air' when one of his friends found out about him and PUBLISHED IT in a magazine. What a thing to do (furious scowl). People are so crass sometimes, it takes some beating. I'm semi-disabled myself with arthritis.

Gotta stop there as I'm getting teary! I hope for a far better outcome for you, ikky.

 

[Becky123]

you are all amazing

Ikky,
you and all the other carers who have posted on her are doing an amazing job, truly. you have to be true to your own emotions and feelings as much as to those of the person you care for.
I believe that there should be a form of bereavment counselling available for families and carers as you are right, the person you know and love changes before your eyes. It is a form of grief and it is due to the loss of the person you knew, in the same way as if the person was suddenly paralysed your life would change also.

In the first instance, do not feel guilty about your husband going to respite. This should be as frequent as needed. For some people with fronto temporal dementia, they can engage in a Cognitive Behavioural Approach to managing the difficult times. if possible when he is more lucid and engaged, you could try and develop some routine and strategies with him.
My grandmother had Picks disease for 15 years and created a set of rules:
why run if you can walk
why walk if you can sit
why sit if you can lie
as you can imagine she didnt do very much towards the end! We had to work around her and find things that could be brought to her according to what she would engage in.
it is bloody hard work which is why looking after yourself should also be a top priority.

We had to keep reminding ourselves that she had a damaged brain - a type of brain injury and that was the reason for her behaviour. it made it a little easier to cope and helped with not taking things personally when she was rude.
Our one saving grace was music - finding different types of music for almost every part of the day, the association with music made so much difference and helped her with a daily routine and knowing what was happening next according to what was playing!

my main advice would be:
Look after yourself -get carers support either from national charities or locally,
set up regular respite care
try routine by music

hope that helps!

 

[ikky]

I cannot believe a social worker could be so cruel and insensitive! I'm a student social worker and I could never ever say such a thing to someone! It probably says something about their own relationships if they feel that is how they would respond to the situation if it was happening to them.

Not all social workers have that attitude. Please complain if social workers make such heartless remarks that are based on their opinions/values. They are not there for that purpose, they are there to support you, assess you and help you to access the services you require. If they aren't supporting you to have a positive life with your loved ones then complain and request a new social worker. Or at least request a new one if you aren't confident to complain. You shouldn't have to explain your reason for the request. And believe me, their managers won't (shouldn't) be happy because the aim is to support carers because it saves money (from a political/economic point of view, not from mine or other good social worker's point of view).

Why do people who lack empathy even do the job?!

Hi
I was about to put your advice into effect and ask for a new social worker but before I had the chance I was told that she no longer worked there - did she jump or was she pushed? Whatever the case, my response is, GOOD. My husband comes back from respite on Monday and I hope I will be able to cope better this time.
Thank you and I hope you have a peaceful weekend.
Ikky

 

[Maymab]

If you have tried to get your husband to go to a day centre, say, and he has refused, perhaps you could say to him "Let's go together". Then if he found that he enjoyed it with you , maybe he would be willing to go on his own. You might say you are sorry but you have something else you need to do and you could gradually wean him to manage without you. Sorry if you have already tried this or if it is not appropriate.

Sent from my Nexus 7 using Talking Point mobile app

 

[billy62]

hi don't know where to start my wife was diagnosed with dementia in 2013 and it feels like i have already lost her to it we have been marred 29 years and I'm heart broken at some of the insensitive comments towards me but she dose not remember saying them i have never felt so lost and alone but I'm not going anywhere as hard as it gets i just don't know anyone going throw the same thing

 

[2jays]

hi don't know where to start my wife was diagnosed with dementia in 2013 and it feels like i have already lost her to it we have been marred 29 years and I'm heart broken at some of the insensitive comments towards me but she dose not remember saying them i have never felt so lost and alone but I'm not going anywhere as hard as it gets i just know anyone going throw the same thing

Welcome to TP billy. So sorry you have the need to find us.

It is so hard to be the brunt of insensitive comments. It's been forgotten long before you can forget those words...

Here is a link to compassionate communication which is so hard to follow all the time, but can help in some circumstances
http://forum.alzheimers.org.uk/show...ionate-Communication-with-the-Memory-Impaired

Hopefully others will be along with more suggestions/support.... You may get more responses if you start your own thread, that way, the invaluable support for you won't get lost in this thread

Chins up honey, now you have joined TP you will never be alone xx


Sent from my iPhone using Talking Point

 

[Illy]

hi don't know where to start my wife was diagnosed with dementia in 2013 and it feels like i have already lost her to it we have been marred 29 years and I'm heart broken at some of the insensitive comments towards me but she dose not remember saying them i have never felt so lost and alone but I'm not going anywhere as hard as it gets i just don't know anyone going throw the same thing

Hi Billy and welcome

Hope you find this forum as comforting as I have. There are some truly inspirational people on here and always someone ready to listen when you have had a tough day. This place is also an exceptional source of information. I have learnt so much - things I couldn't find out about elsewhere. They say it helps to talk - and it does. xx

 

[LYN T]

hi don't know where to start my wife was diagnosed with dementia in 2013 and it feels like i have already lost her to it we have been marred 29 years and I'm heart broken at some of the insensitive comments towards me but she dose not remember saying them i have never felt so lost and alone but I'm not going anywhere as hard as it gets i just don't know anyone going throw the same thing

Hi billy62

Welcome to TP. You have come to the right place as there are, unfortunately, plenty of people going through feelings of grief and sorrow. I'm so sorry you are heartbroken at some of your wife's comments and it's good that you realise that it's the Dementia speaking not the lady you married all those years ago.

From today I hope you will not feel quite so lost or alone; we are here to help and listen. Just tell us what you want, when you want-no pressure.

Take care and I hope we hear from you soon

Lyn T

 

[Bronwen]

I am so pleased you have found talking point, please stay with us. I joined when my husband was diagnosed with frontal temporal dementia and cant tell you how good it was to air my fears, frustrations and sadness.
My husband's personality changed from a very caring and capable husband to a very confused and challenging husband....but being able to record everything here, even in the middle of the night when he was throwing things down the stairs and refusing me access to HIS bedroom, being able to talk here helped me so much.

Please take as much support from friends, family etc as you can, but as we all know, you have to live with this evil disease to understand what its like, and sharing with others on talking point in the same situation was a life saver to me.

 

[Scarlett123]

I don't know how I would have got through the things I have, without the support of the wonderful folk on Talking Point. One of the first things I posted about, was how I wanted to actually murder the next "friend" who said "well it isn't John who is saying or doing those things - it's the illness".

I know that!!!! One of the most wonderful things about TP, was that when I posted this, everybody knew what I meant. This is the best place in the world to put your feelings and thoughts on paper, no matter what time of the day or night, because there's always someone else online.

Huge cyber bouquets, chocolates, and bottles of your favourite tipple are winging their way to all newbies.