Return to HDA home page HDA Message Board
HDA About the HDA HDA What is HD HDA Juvenile HD HDA Children & Young People HDA Professionals HDA Resources HDA Research HDA HDA News HDA Events HDA Contact the HDA HDA Home Page

Outside of office hours if you need someone to speak to you can phone the Samaritans on 116 123


Go Back   HDA Message Board > Message Board Categories > General HD topics

General HD topics Open forum for all other issues concerning Huntingtonís disease

Reply
 
Thread Tools Display Modes
Old 08-02-18, 11:30 PM   #1
Spanishgraeme
Approved Member
 
Spanishgraeme's Avatar
 
Join Date: Dec 2017
Location: Newcastle
Posts: 21
Default HD Wife said she was leaving me today.........

During one of her mood swings, my wife, told me today that she was leaving me, never wanted to see me again and she wasn't going to let me know where she was going.
That was all about 3 hours ago and she hasn't done anything other than get dressed.
It's only 10:15pm but I've decided to head off to bed. I can't sit up all night, with her, on the off chance that she decides to walk out. As I'm writing this I'm thinking.........but that's exactly what I should do. I should be with her....I should be watching, in case she wanders off.
I don't think that I can live like that though. I want her to be safe. I want her to know that I'm looking after her best interests.
I don't think that I can function if I'm Frazzled all the time though.
If anyone else has had to deal with threats to leave and can offer any guidance. Please let me know.
I can't decide what is the next step if decides to go walkabout.
At the moment, anyone trying to assess her state of mind would likely decide that she simply doesn't like me anymore. I know that it's the HD.
Trying to convince anyone else would be difficult as she presents as fairly plausible.

Hope everyone else is having a good day
Spanishgraeme is offline   Reply With Quote
Old 09-02-18, 10:11 AM   #2
banda
Approved Member
 
Join Date: Apr 2014
Location: Consett, County Durham
Posts: 475
Default Re: HD Wife said she was leaving me today.........

Hi....sorry you are having all of this emotional stress and bless you for your caring and perseverance. We all at some time have to accept it's the HD and not the person but it doesn't make it any better....I guess it is equally as distressing for the sufferer too. Have you accessed any help from age concern? social services or other organisations? I know that there are alarmed mats available so that if the person gets out of bed an alarm sounds..they are used a lot by people with alzheimers...there is also simply locking the doors and hiding the keys although morally we may not like to do that. There may be other solutions too...take care...xx
banda is offline   Reply With Quote
Old 09-02-18, 11:52 AM   #3
Spanishgraeme
Approved Member
 
Spanishgraeme's Avatar
 
Join Date: Dec 2017
Location: Newcastle
Posts: 21
Default Re: HD Wife said she was leaving me today.........

Quote:
Originally Posted by banda View Post
Hi....sorry you are having all of this emotional stress and bless you for your caring and perseverance. We all at some time have to accept it's the HD and not the person but it doesn't make it any better....I guess it is equally as distressing for the sufferer too. Have you accessed any help from age concern? social services or other organisations? I know that there are alarmed mats available so that if the person gets out of bed an alarm sounds..they are used a lot by people with alzheimers...there is also simply locking the doors and hiding the keys although morally we may not like to do that. There may be other solutions too...take care...xx
Thank you Banda

When I took the dog for his his walk, last night, I unlocked the back door and took the garage keys with me. This was just in case she decided to lock me out of the front door.........she has access to keys.
I didn't get locked out !!!

When I came downstairs this morning, she was fast asleep on the couch. Thank god.

Sometimes I overthink things. It doesn't do my stress levels any favours but I'd rather be ready to solve a problem than taken by surprise.

We are going to see Dr Komati in a couple of weeks. Perhaps that will be helpful for us both.

Thanks again 🙂
Spanishgraeme is offline   Reply With Quote
Old 09-02-18, 03:24 PM   #4
banda
Approved Member
 
Join Date: Apr 2014
Location: Consett, County Durham
Posts: 475
Default Re: HD Wife said she was leaving me today.........

There is also the HD team at Walkergate...give them a buzz. They have been really helpful...mo need to wait for a referral.
banda is offline   Reply With Quote
Old 14-02-18, 12:22 PM   #5
Mark Mountain
Approved Member
 
Join Date: Jul 2015
Location: Norfolk UK
Posts: 28
Default Re: HD Wife said she was leaving me today.........

Quote:
Originally Posted by Spanishgraeme View Post
During one of her mood swings, my wife, told me today that she was leaving me, never wanted to see me again and she wasn't going to let me know where she was going.
That was all about 3 hours ago and she hasn't done anything other than get dressed.
It's only 10:15pm but I've decided to head off to bed. I can't sit up all night, with her, on the off chance that she decides to walk out. As I'm writing this I'm thinking.........but that's exactly what I should do. I should be with her....I should be watching, in case she wanders off.
I don't think that I can live like that though. I want her to be safe. I want her to know that I'm looking after her best interests.
I don't think that I can function if I'm Frazzled all the time though.
If anyone else has had to deal with threats to leave and can offer any guidance. Please let me know.
I can't decide what is the next step if decides to go walkabout.
At the moment, anyone trying to assess her state of mind would likely decide that she simply doesn't like me anymore. I know that it's the HD.
Trying to convince anyone else would be difficult as she presents as fairly plausible.

Hope everyone else is having a good day

I can't offer any advice, but it may be of some value to know that my wife also has episodes of this nature. It is very difficult.
Mark Mountain is offline   Reply With Quote
Old 14-02-18, 12:38 PM   #6
Spanishgraeme
Approved Member
 
Spanishgraeme's Avatar
 
Join Date: Dec 2017
Location: Newcastle
Posts: 21
Default Re: HD Wife said she was leaving me today.........

Quote:
Originally Posted by Mark Mountain View Post
I can't offer any advice, but it may be of some value to know that my wife also has episodes of this nature. It is very difficult.
I'm sorry to hear that your wife and yourself have to go through something similar.
Being reminded that we are not alone with these troubles helps enormously.

Thanks for taking the time. 🙂
Spanishgraeme is offline   Reply With Quote
Old 14-02-18, 06:52 PM   #7
LECS
Approved Member
 
Join Date: Jul 2012
Location: Shrewsbury
Posts: 214
Default Re: HD Wife said she was leaving me today.........

Quote:
Originally Posted by Spanishgraeme View Post
During one of her mood swings, my wife, told me today that she was leaving me, never wanted to see me again and she wasn't going to let me know where she was going.
That was all about 3 hours ago and she hasn't done anything other than get dressed.
It's only 10:15pm but I've decided to head off to bed. I can't sit up all night, with her, on the off chance that she decides to walk out. As I'm writing this I'm thinking.........but that's exactly what I should do. I should be with her....I should be watching, in case she wanders off.
I don't think that I can live like that though. I want her to be safe. I want her to know that I'm looking after her best interests.
I don't think that I can function if I'm Frazzled all the time though.
If anyone else has had to deal with threats to leave and can offer any guidance. Please let me know.
I can't decide what is the next step if decides to go walkabout.
At the moment, anyone trying to assess her state of mind would likely decide that she simply doesn't like me anymore. I know that it's the HD.
Trying to convince anyone else would be difficult as she presents as fairly plausible.

Hope everyone else is having a good day
I really feel for you and your wife. I behave like your wife and I have no control, itís like how I imagine having Touretteís to be, words all come out of my mouth randomly and none of them I mean. I have given it much thought over the years and have decided I am worse when I feel I canít make sense of things, I canít process stuff, I donít understand, I feel that no one understands me or gets me I want out...immediately. I first ran away when I was a child because I didnít get what my dad was asking and then in my twenties and thirties, looking back it was always when I was upset and confused and I couldnít make sense of the situation or someone was asking to much of me. Talking too much, I needed peace to process my thoughts. I like reassurance, I like not to be challenged, I donít respond well if you enter into an argument with me. I can be told but not at the point of crisis or during an argument. I find it hard to remember what I have said, what you have said and how my words have caused hurt and upset. I say go away now I live alone instead of I am leaving when I want things to stop and when Iíve calm down I want you to return minutes later when you do not because you are still reeling from my hurtful words that I did not mean I am sad and wish that you had stayed. Thatís HD and itís horrible. Your wife will not be able to help it and there is little that you can do except grown a thick skin and roll with the waves. The quicker you do the quicker she will come back to you and be smiling again talking about something else. When I was a young adult I couldnít understand how my dad could endure how my mum treated him, she had HD but he used to say that if she smiled that day it was a good day and he had done well. He loved her for over 50 years and got nothing back but heartache. She died 2 years ago now but every time I speak to him he tells me that he would give anything to have her back even with HD. I did leave my husband nearly 3 years ago just as your wife is threatening and now live alone but he hasnít gone far and I still rather share a cup of tea with him than anyone else and we support each other as best we can. My mum hated being with my dad and she said so daily and she tried to leave but he wouldnít have any of it and they battled through but it was awful to watch. Iím lucky because I know Iím unwell and so I can tell my ex husband what I need but he often gets it wrong and when he does he has the sanctuary of his place as do I, before we can resume speaking again. Only you and your wife can decide how you can manage her illness. I prefer to accommodate my HD rather than ask it not to be present. Communication needs to be clear, I need to have understood. There are things that I cannot cope with so need to be avoided. I do like others to remember that I am still in here however small and that I have to do what my HD dictates. If I didnít try to control my HD it would take over and I would lose, so I try to manage it but I need those around to understand how much effort that takes. I need to feel others are on my side and not fighting against what I have no control over. Perhaps ask your wife in a calm moment if she can explain how things are for her and if she knows what might help. My grandmother who had HD left my grandfather and they lived at opposite ends of the village and never spoke. My grandmother unfairly was considered the joke of the village. She couldnít help any of it. Perhaps find some respite away from HD that could help you recharge. However you do it, itís a tough battle that you are both going through but an HD person is not in control of all they say. Best wishes to you both. Lecs.
LECS is offline   Reply With Quote
Old 14-02-18, 07:21 PM   #8
Spanishgraeme
Approved Member
 
Spanishgraeme's Avatar
 
Join Date: Dec 2017
Location: Newcastle
Posts: 21
Default Re: HD Wife said she was leaving me today.........

Quote:
Originally Posted by LECS View Post
I really feel for you and your wife. I behave like your wife and I have no control, itís like how I imagine having Touretteís to be, words all come out of my mouth randomly and none of them I mean. I have given it much thought over the years and have decided I am worse when I feel I canít make sense of things, I canít process stuff, I donít understand, I feel that no one understands me or gets me I want out...immediately. I first ran away when I was a child because I didnít get what my dad was asking and then in my twenties and thirties, looking back it was always when I was upset and confused and I couldnít make sense of the situation or someone was asking to much of me. Talking too much, I needed peace to process my thoughts. I like reassurance, I like not to be challenged, I donít respond well if you enter into an argument with me. I can be told but not at the point of crisis or during an argument. I find it hard to remember what I have said, what you have said and how my words have caused hurt and upset. I say go away now I live alone instead of I am leaving when I want things to stop and when Iíve calm down I want you to return minutes later when you do not because you are still reeling from my hurtful words that I did not mean I am sad and wish that you had stayed. Thatís HD and itís horrible. Your wife will not be able to help it and there is little that you can do except grown a thick skin and roll with the waves. The quicker you do the quicker she will come back to you and be smiling again talking about something else. When I was a young adult I couldnít understand how my dad could endure how my mum treated him, she had HD but he used to say that if she smiled that day it was a good day and he had done well. He loved her for over 50 years and got nothing back but heartache. She died 2 years ago now but every time I speak to him he tells me that he would give anything to have her back even with HD. I did leave my husband nearly 3 years ago just as your wife is threatening and now live alone but he hasnít gone far and I still rather share a cup of tea with him than anyone else and we support each other as best we can. My mum hated being with my dad and she said so daily and she tried to leave but he wouldnít have any of it and they battled through but it was awful to watch. Iím lucky because I know Iím unwell and so I can tell my ex husband what I need but he often gets it wrong and when he does he has the sanctuary of his place as do I, before we can resume speaking again. Only you and your wife can decide how you can manage her illness. I prefer to accommodate my HD rather than ask it not to be present. Communication needs to be clear, I need to have understood. There are things that I cannot cope with so need to be avoided. I do like others to remember that I am still in here however small and that I have to do what my HD dictates. If I didnít try to control my HD it would take over and I would lose, so I try to manage it but I need those around to understand how much effort that takes. I need to feel others are on my side and not fighting against what I have no control over. Perhaps ask your wife in a calm moment if she can explain how things are for her and if she knows what might help. My grandmother who had HD left my grandfather and they lived at opposite ends of the village and never spoke. My grandmother unfairly was considered the joke of the village. She couldnít help any of it. Perhaps find some respite away from HD that could help you recharge. However you do it, itís a tough battle that you are both going through but an HD person is not in control of all they say. Best wishes to you both. Lecs.
Thank you Lecs.

I can't tell you how much I appreciate hearing the point of view of the person that has HD.
It's easy to forget that my wife is putting up with far worse the me.
I try to remind myself as often as possible. I never want to lost sight of that.

I love my wife the same as I did 30 years ago when we met. That hasn't changed.

I agree with your grandfather. If my wife smiles or laugh's about something, then the day has been a success. It's usually something that she sees on the tv rather than a reaction to something that I have said. That doesn't matter though .......if she's happy, she's happy. That's enough for me.

I can't change her HD. I can help her to make the best of it though.

Thank you for your help. 🙂
Spanishgraeme is offline   Reply With Quote
Old 15-02-18, 12:47 AM   #9
LECS
Approved Member
 
Join Date: Jul 2012
Location: Shrewsbury
Posts: 214
Default Re: HD Wife said she was leaving me today.........

Quote:
Originally Posted by Spanishgraeme View Post
Thank you Lecs.

I can't tell you how much I appreciate hearing the point of view of the person that has HD.
It's easy to forget that my wife is putting up with far worse the me.
I try to remind myself as often as possible. I never want to lost sight of that.

I love my wife the same as I did 30 years ago when we met. That hasn't changed.

I agree with your grandfather. If my wife smiles or laugh's about something, then the day has been a success. It's usually something that she sees on the tv rather than a reaction to something that I have said. That doesn't matter though .......if she's happy, she's happy. That's enough for me.

I can't change her HD. I can help her to make the best of it though.

Thank you for your help. 🙂
You are very very welcome. Any time. My previous posts might give you some insight into HD, although I can only say how it affects me. I hope that you have been having some better moments. Hang in there. Sending you both lots of good wishes. Lecs.
LECS is offline   Reply With Quote
Old 09-03-18, 04:10 AM   #10
Annie
Approved Member
 
Join Date: Mar 2012
Posts: 12
Default Re: HD Wife said she was leaving me today.........

Quote:
Originally Posted by Spanishgraeme View Post
During one of her mood swings, my wife, told me today that she was leaving me, never wanted to see me again and she wasn't going to let me know where she was going.
That was all about 3 hours ago and she hasn't done anything other than get dressed.
It's only 10:15pm but I've decided to head off to bed. I can't sit up all night, with her, on the off chance that she decides to walk out. As I'm writing this I'm thinking.........but that's exactly what I should do. I should be with her....I should be watching, in case she wanders off.
I don't think that I can live like that though. I want her to be safe. I want her to know that I'm looking after her best interests.
I don't think that I can function if I'm Frazzled all the time though.
If anyone else has had to deal with threats to leave and can offer any guidance. Please let me know.
I can't decide what is the next step if decides to go walkabout.
At the moment, anyone trying to assess her state of mind would likely decide that she simply doesn't like me anymore. I know that it's the HD.
Trying to convince anyone else would be difficult as she presents as fairly plausible.

Hope everyone else is having a good day
I realise you posted a while ago- hope you have had some positive times since. You have reminded me of the rollercoaster that I lived for several years, my hubby has been in full time care for 5 years now. I didnt realise the impact it had on me at the time, but was hugely stressful. I dont believe the threats were made rationally- I didnt know he had HD half the time, so at least there was a reason. I think the only way I survived was to understand I had a fairly fatalistic approach to life - what will be, will be. You are not responsible , alone , for your wife. She makes her own decisions and threats without appreciating the impact it has on others ( you) . I heard a psychiatrist a an HDA family conference describe HD as "adult onset autism" Also that the feedback loops in the brain which tell you how others react emotionally to you are faulty/damaged. I hope that makes sense. It helped me understand better. The "going walk about" is hard. Sometimes he did it on a motorbike ( fast) , or on clifftops near our home, or in the rain, or once in a kayak at 10pm! I couldnt go out and look, my priority was to kids at home. Now I realise part of that behaviour is just getting head space.The "presenting plausibly" to others is hard too.
Not sure if it helps - take care of yourself too please.
Annie is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off

Forum Jump


All times are GMT +1. The time now is 04:32 AM.


About the HDA Message Board

A UK-based forum for people whose lives are affected by Huntington's disease and wish to share their experiences with others. Moderated by SHDAs from the HDA, a UK registered charity.

Please Remember

The HDA Message Board is not a substitute for professional advice. Consult a relevant professional before making decisions that could affect you or others.

Donate to HDA


Powered by vBulletin® Version 3.8.5
Copyright ©2000 - 2018, Jelsoft Enterprises Ltd.
Registered Charity No. 296453. Website Content © HDA 2010

HDA