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 Huntington’s disease

Reply
 
Thread Tools Display Modes
Old 30-11-12, 09:03 PM   #1
Monica
Approved Member
 
Join Date: Sep 2012
Posts: 38
Default Husband's lack of enthusiasm

Just need to get this off my chest.
I've read that HD sufferers can be quite negative & tonight I've just experienced that 3 times. Was feeling good when I left work - day went ok, weekend ahead - but I soon felt like I had cold water poured on me by husband. I'd been dying to tell him about a furniture charity shop I found that has really good stuff in, although I didn't find quite what I was looking for but it's useful to know about for the future. He just said 'very good' in a flat, automatic response that made me feel he didn't give a ****. Then I showed him a photo my cousin sent me of me & my mum all dressed up for her wedding (he hadn't come as he didn't want to), and all he could say was, my cousin looked like she was yawning. Then I've just shown him an amusing (well I thought it was) Youtube video of a dog obeying its master's command to fetch the cat by picking it up over its back & carrying it in - he didn't even smile, just said what are they cats or what?
Sometimes I could just burst into tears. It feels like I can't connect with him, or that we have no shared interests any more. I don't even know for definite that he's got HD but I feel pretty sure he has. Sometimes I think if it wasn't for thinking that he can't help it, it's probably the HD, I don't know whether I'd put up with this. Sorry for ranting but I'm a mixture of fed up & angry.
Monica is offline   Reply With Quote
Old 30-11-12, 11:05 PM   #2
hdjersey
Approved Member
 
Join Date: May 2007
Location: Jersey, Channel Islands
Posts: 21
Default Re: Husband's lack of enthusiasm

Hi Monica

I know exactly how you are feeling, there are times when my husband acts in a very similar way. I hate the fact that he changes from the man I fell in love with, to someone I dispise. Thankfully it's not all the time and I'm slowly learning to let things go over my head to save my sanity more than anything! That's what I love about this message board - it lets you vent your anger! I hope things pick up for you, but remeber you've got lots of support here. Take care, Emma x
hdjersey is offline   Reply With Quote
Old 30-11-12, 11:26 PM   #3
Monica
Approved Member
 
Join Date: Sep 2012
Posts: 38
Default Re: Husband's lack of enthusiasm

Quote:
Originally Posted by hdjersey View Post
Hi Monica

I know exactly how you are feeling, there are times when my husband acts in a very similar way. I hate the fact that he changes from the man I fell in love with, to someone I dispise. Thankfully it's not all the time and I'm slowly learning to let things go over my head to save my sanity more than anything! That's what I love about this message board - it lets you vent your anger! I hope things pick up for you, but remeber you've got lots of support here. Take care, Emma x
Thanks Emma. I feel better for knowing I'm not the only person who feels like this & it isn't just me that's a horrible person for feeling so fed up with him. Sometimes you do feel like you despise them don't you, and then you feel awful for thinking that. I'm having a can of cider now & that's helping me to get over it! Cheers! Monica x
Monica is offline   Reply With Quote
Old 02-12-12, 12:22 AM   #4
Cupcake
Approved Member
 
Join Date: Mar 2011
Location: East Anglia
Posts: 1,490
Default Re: Husband's lack of enthusiasm

Hope u r feeling abit better today.

Tried to private message u but could not send it u do not have that turned on.

Message me if u want take care xxx
Cupcake is offline   Reply With Quote
Old 03-12-12, 11:33 AM   #5
Monica
Approved Member
 
Join Date: Sep 2012
Posts: 38
Default Re: Husband's lack of enthusiasm

Quote:
Originally Posted by Cupcake View Post
Hope u r feeling abit better today.

Tried to private message u but could not send it u do not have that turned on.

Message me if u want take care xxx
Hi Cupcake,

Am feeling better today thanks. I suggested going to the cinema on Saturday as we haven't been for years, & even though he was non-committal, I persisted with it, and we actually had a good time, went for a drink afterwards and it was good. Made me realise I'll have to do that in future, just go ahead anyway if he's unenthusiastic, and chances are he'll enjoy it anyway.

Thanks for your kind thoughts. xx
Monica is offline   Reply With Quote
Old 03-12-12, 08:31 PM   #6
Cupcake
Approved Member
 
Join Date: Mar 2011
Location: East Anglia
Posts: 1,490
Default Re: Husband's lack of enthusiasm

Glad u r feeling better and you had nice trip to cinema.

Sometimes it is hard to stay focused and not be dragged down by the mood, and always expecting the worse.

I find my hubby up and down, and like you tend to pick my moments when I suggest things, if we have done something together and it has gone well, he is usually keen to agree to doing something again or something different. We have just had nice break away with our friends, it went well, and also gave me a break as they all tried to keep hubby busy.

Sunday and today has been down days, I don't know if he is over tired, as he is obsessed about his teeth and gums, and it is affecting his eating, drinking and speech. I have just come in from work, but as I feel relaxed after my break am managing to be patient.

Life is a challenge for us both daily, but I am so pleased you are feeling more positive.


Take care xxxx
Cupcake is offline   Reply With Quote
Old 04-12-12, 02:06 PM   #7
Allan
Approved Member
 
Allan's Avatar
 
Join Date: Sep 2012
Location: Hastings, East Sussex, UK
Posts: 1,149
Default Re: Husband's lack of enthusiasm

Hi Monica & co

I’ve been reading everyone’s stories, snippets and news - trying to see where my family fit into the negative words + world of HD ……… and I’m trying to find something positive in all this – but it’s so difficult to come to terms with what’s happening before my eyes.

Our family situation is unusual in that we have no history of HD. My son, S, aged 25, has recently been diagnosed with young onset HD with parkinsonian features. We have known that there was something drastically not right for about five years - and now we know why.

It looks as though this new mutation could have been activated via a rogue sperm - so that means me. Because there might be a possibility of the Huntington gene being abnormal in my daughter, H, I’m going to have Genetic Counselling & Testing to see if I’m a carrier, ie if it is family historical, or whether it was actually started by a single defective sperm [or not]. There could be other avenues to explore if not. This will then allow H to make a decision as to predictive gene testing for herself - or not. She’s certainly had a different view of her possible life to come in the past few months. She has also attended a couple of Support Group meetings in London recently.

S is now showing a notable decline in his movement\stumbling\balance, memory [losing things] and unable to follow things through [ie just one thing at a time] and emotional [frustration & anger] and behavioural stuff.

He still lives [sort of] independently in a flat but can't really cope at all. But at 25 he's adamant that he's ok. So, that's ok with me.

I went over to see him last Friday as I knew he wouldn’t make it over to mine. His key was in the lock – outside. He hadn’t been out for a couple of days and thought he had lost his keys indoors. The place was an absolute tip, so I got to work. When I eventually got round to opening his post his Disability Living Allowance was confirmed and his Free Bus Pass had arrived a couple of days earlier. So, I collected up the laundry and we left to get the bus over to my place. Waiting for the bus outside his flat I asked him to make sure he had his Bus Pass ready. He confirmed that it was in his wallet [I saw it]. Bus didn’t turn up so we walked 300m to the Co-op to catch another bus and to allow S to get some money from the cash machine – no wallet!! Retraced the route three times – no luck. So, we got a taxi over to mine and went through what the contents were – mainly cards and sick squid.

By the time we sat down to our meal he wasn’t phased by the loss – “It’s just one of those things that keep happening to me.” His friend came and picked him up at about 9.00 ……… I was whacked!

So, I was up early on Saturday, on the phone to the police, then Santander to cancel\block his card, then called in at the library to apply for a replacement Bus Pass, etc – phew!

He didn’t answer his phone at all over the weekend which was a bit of a worry. In my own way I’m managing S and his current situation well – so long as I can let it all out with lengthy emails to friends, family – and the messy board.

Yesterday, I went to see him and arrived at 3.15 [he doesn’t get up until 2ish - stomach pains plus other stuff has put his natural clock out of sync] after putting “LOST WALLET” posters in the local shops and also asking if a wallet had been handed in – no luck.

I rapped on the door – no reply. Tried a musical rap on the door – no reply. Harsh tap on the door with keys – no reply. Looked through the letter box, could see through to the bed-sitting room – not in bed. Called through the letter box – no reply. Shouted through the letter box – no reply.

Took stock of possible options: 1. he might be out at the shops – unlikely; 2. try my spare key – wouldn’t turn, therefore S’s key is on the inside. So he’s in but not responding. Options: 1. try and break in myself; 2. call the emergency services – police, fire & ambulance please.

Third option: go through the knocking and calling again but in reverse. So I get down on my hands and knees and SHOUT! through the letter box - nothing, SHOUT! a second time – absolutely nothing. Just as I’m getting up off my knees the door unlocks and opens – et voilà, S …….. in shorts only. “Oh, hi Dad” he says in monotonous sounding voice. Then he bends down to pick something up – his wallet!

Some kind citizen has found it, seen the photo on the as yet unused bus pass and probably handed it in to the Café below. I’ve asked S to call in and thank them. So, now we’ve got to do everything in reverse ie unblock his Santander account, etc.

I then mentioned that I’d had an email about his Credit Record that I’m trying to sort out and they’ll only let me do it if I have Power of Attorney – and he agreed there and then that it’s ok for me to go ahead. Obviously, he’s not aware of the full implications of this. I think a solicitor has to be involved but I’ll get the ball rolling straightaway. So that’s positive – I think.

Knowing S’s negative “brick wall” attitude to most suggestions it always takes a complex and contrived [sometimes sneaky] way to try and get him to understand the positive outcomes and get him to take them on board. I’m ok when I’m dealing with the day-to-day S things - and I can sort of “read S’s mind” so I don’t get too upset when things don’t happen straightaway.

But I know from his eyes
and I know from his smile
that tonight will be fine,
will be fine, will be fine, will be fine
…… for a while.

Adapted ever so slightly from Leonard Cohen

Cheers

Allan
Allan is offline   Reply With Quote
Old 04-12-12, 09:39 PM   #8
Scooby
Approved Member
 
Join Date: Feb 2007
Location: Vale of Evesham
Posts: 494
Default Re: Husband's lack of enthusiasm

Quote:
Originally Posted by Allan View Post
Hi Monica & co

I’ve been reading everyone’s stories, snippets and news - trying to see where my family fit into the negative words + world of HD ……… and I’m trying to find something positive in all this – but it’s so difficult to come to terms with what’s happening before my eyes.

Our family situation is unusual in that we have no history of HD. My son, S, aged 25, has recently been diagnosed with young onset HD with parkinsonian features. We have known that there was something drastically not right for about five years - and now we know why.

It looks as though this new mutation could have been activated via a rogue sperm - so that means me. Because there might be a possibility of the Huntington gene being abnormal in my daughter, H, I’m going to have Genetic Counselling & Testing to see if I’m a carrier, ie if it is family historical, or whether it was actually started by a single defective sperm [or not]. There could be other avenues to explore if not. This will then allow H to make a decision as to predictive gene testing for herself - or not. She’s certainly had a different view of her possible life to come in the past few months. She has also attended a couple of Support Group meetings in London recently.

S is now showing a notable decline in his movement\stumbling\balance, memory [losing things] and unable to follow things through [ie just one thing at a time] and emotional [frustration & anger] and behavioural stuff.

He still lives [sort of] independently in a flat but can't really cope at all. But at 25 he's adamant that he's ok. So, that's ok with me.

I went over to see him last Friday as I knew he wouldn’t make it over to mine. His key was in the lock – outside. He hadn’t been out for a couple of days and thought he had lost his keys indoors. The place was an absolute tip, so I got to work. When I eventually got round to opening his post his Disability Living Allowance was confirmed and his Free Bus Pass had arrived a couple of days earlier. So, I collected up the laundry and we left to get the bus over to my place. Waiting for the bus outside his flat I asked him to make sure he had his Bus Pass ready. He confirmed that it was in his wallet [I saw it]. Bus didn’t turn up so we walked 300m to the Co-op to catch another bus and to allow S to get some money from the cash machine – no wallet!! Retraced the route three times – no luck. So, we got a taxi over to mine and went through what the contents were – mainly cards and sick squid.

By the time we sat down to our meal he wasn’t phased by the loss – “It’s just one of those things that keep happening to me.” His friend came and picked him up at about 9.00 ……… I was whacked!

So, I was up early on Saturday, on the phone to the police, then Santander to cancel\block his card, then called in at the library to apply for a replacement Bus Pass, etc – phew!

He didn’t answer his phone at all over the weekend which was a bit of a worry. In my own way I’m managing S and his current situation well – so long as I can let it all out with lengthy emails to friends, family – and the messy board.

Yesterday, I went to see him and arrived at 3.15 [he doesn’t get up until 2ish - stomach pains plus other stuff has put his natural clock out of sync] after putting “LOST WALLET” posters in the local shops and also asking if a wallet had been handed in – no luck.

I rapped on the door – no reply. Tried a musical rap on the door – no reply. Harsh tap on the door with keys – no reply. Looked through the letter box, could see through to the bed-sitting room – not in bed. Called through the letter box – no reply. Shouted through the letter box – no reply.

Took stock of possible options: 1. he might be out at the shops – unlikely; 2. try my spare key – wouldn’t turn, therefore S’s key is on the inside. So he’s in but not responding. Options: 1. try and break in myself; 2. call the emergency services – police, fire & ambulance please.

Third option: go through the knocking and calling again but in reverse. So I get down on my hands and knees and SHOUT! through the letter box - nothing, SHOUT! a second time – absolutely nothing. Just as I’m getting up off my knees the door unlocks and opens – et voilà, S …….. in shorts only. “Oh, hi Dad” he says in monotonous sounding voice. Then he bends down to pick something up – his wallet!

Some kind citizen has found it, seen the photo on the as yet unused bus pass and probably handed it in to the Café below. I’ve asked S to call in and thank them. So, now we’ve got to do everything in reverse ie unblock his Santander account, etc.

I then mentioned that I’d had an email about his Credit Record that I’m trying to sort out and they’ll only let me do it if I have Power of Attorney – and he agreed there and then that it’s ok for me to go ahead. Obviously, he’s not aware of the full implications of this. I think a solicitor has to be involved but I’ll get the ball rolling straightaway. So that’s positive – I think.

Knowing S’s negative “brick wall” attitude to most suggestions it always takes a complex and contrived [sometimes sneaky] way to try and get him to understand the positive outcomes and get him to take them on board. I’m ok when I’m dealing with the day-to-day S things - and I can sort of “read S’s mind” so I don’t get too upset when things don’t happen straightaway.

But I know from his eyes
and I know from his smile
that tonight will be fine,
will be fine, will be fine, will be fine
…… for a while.

Adapted ever so slightly from Leonard Cohen

Cheers

Allan

Hi again Allan (replied to your other thread)

Well sounds about right, S sounds alot like how my son was. Even though we do have to be a bit sneaky sometimes its all about what works for you or trial and error. Looks like your doing a great job though. Try not to try and do everything yourself it is important that you get some support and look after yourself too.

Take care
Sue x
__________________
It's not the clock that ticks the loudest that works the best.
Scooby 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 08:53 PM.


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