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 > Carers, things that have helped

Carers, things that have helped Share your experiences of caring, and pass on practical advice and helpful tips

Reply
 
Thread Tools Display Modes
Old 27-12-17, 10:12 AM   #1
PB
New Member
 
Join Date: Dec 2017
Posts: 1
Default Finding it hard to care

Hi My Husband of 25 yrs was diagnosed with HD in May, there was no known family history so it came as a shock. Now looking back his behaviour has been odd for approx 5-6 years. I have been searching the Forum for some clues as to how you all cope- because to be brutally honest I am not coping. I no longer recognise him- and I really donít like him. I am struggling to change my mindset to ďitís the disease not himĒ maybe because we have had several years of his behaviour changing without knowledge or diagnosis.
I know it sounds selfish as I should be concerned about him, but I feel so trapped with no options and with a person whom I both love and totally despise. I no longer want to go out with him in social situations as his behaviour is embarrassing and just not him!! At home he has become so selfish, I am left to do everything, and itís exhausting. I can almost hear you all shouting- Itís the disease. I know this and yet it doesnít make things any easier. If he didnít have HD and this was just him, I would be getting a divorce.
Am I just being cold and callous feeling this way? He is oblivious of his behaviour and quite happy in his own world.
Iím 46 and to be honest feel like my life has been ended and that I face a pretty lonely and bleak future . I would appreciate some advice on how othe r people cope with their partners behaviours. At the minute Iím not discussing with him how he behaves as Iím sure it would upset him and he canít change it . Thanks xx
PB is offline   Reply With Quote
Old 27-12-17, 12:55 PM   #2
Jojo
Approved Member
 
Join Date: Jun 2017
Location: Manchester
Posts: 10
Default Re: Finding it hard to care

Hi PB

Im really sorry that you are feeling like this and to be honest I have felt like that many times. I find the best way to deal with it is just one day at a time, do you have any family or friends support that you can offload to? I work a few hours a day too but it's a little bit of me time to get away from the stress and strains of life at home.

Sorry I can't be more helpful but I'm sure you'll get lots more advice from the forum.

Take Care

Jojo x
Jojo is offline   Reply With Quote
Old 28-12-17, 11:40 AM   #3
shiraz
Approved Member
 
shiraz's Avatar
 
Join Date: Oct 2014
Location: Merseyside
Posts: 884
Default Re: Finding it hard to care

Sorry you find yourself on her PB...but hello. Your post is like a case of deja vu for me!! You are not being cold and callous (I've had thoughts far worse) - I'm sure we can all relate to those feelings of being trapped, thwarted, angry and downright fed up being jack of all trades. It's difficult as the spouse of someone with hd because really you won't have a normal marriage - planning things together, conversation, love & romance - they all go out the window. You become more master of the household, mother, nurse, and carer - aka general dogsbody!! It's all a shock to the system and can make you feel very isolated and full of anger and loathing. Infact I'm wondering if you've posted now because it's christmas time and everyone is meant to be having fun and you're not? Little things like not getting a present used to really upset me before we found out about hd...but you get over it. You have to.

I'd never heard of hd either when my husband was finally diagnosed with it - it came out of the blue for him too. For me it was a great relief - I knew something was "wrong" for years and I tried to learn as much about it as I could and more importantly about how to care/change my responses - it helps. I also tell myself that none of this is his fault, it's not fair on him either and really you are grieving for the man he once was and the life you once had. You'll have good days, not so good days and bad days when you want to scream and shout...and cry. Then you have days when you get a thankyou, a I'm sorry, and maybe a hug and feel like a wicked witch!!. Somehow you learn to cope and if you can change your expectations you'll find that caring for someone is actually a real honour. Getting my husband on medications has helped tremendously and I'm no longer living with a Jekyll & Hyde character and walking on eggshells. Seeing him getting worse is distressing. If it wasn't hd it would be something else though coz sadly life isn't like in the fairytales - few of us get to actually live happily ever after!!

Find something to do for you - whether it's just going for a walk, pottering in the garden, a part time job. Something that makes you happy and feel normal.And remember all the good times you must have had over the years ...memories can be a great comfort.
shiraz is offline   Reply With Quote
Old 28-12-17, 02:26 PM   #4
Allan
Approved Member
 
Allan's Avatar
 
Join Date: Sep 2012
Location: Hastings, East Sussex, UK
Posts: 1,120
Default Re: Finding it hard to care

.
Hi PB

Iím struggling to write this as Iíve just read Shirazís response and itís been just the same for me - but with the obvious differences in that itís my son who has HD [with no previous family history]. So, a different family relationship.

He was diagnosed 5 years ago, at the age of 25, with Young Onset HD. I have had similar experiences with him to those that you have observed both pre- and post-diagnosis. There were times when he was absolutely unbearable [although certain people have said that about me too!]. He wasnít caring for himself; unsuccessfully attending work interviews; issues with personal hygiene; couldnít manage any cash or financial situations; derogatory, disparaging, fault-finding, rubbishing and vilifying everyone in his life - family and friends included. He would either not attend NHS and Jobcentre appointments - or storm out halfway through.

He was an absolute nightmare.

The easiest or only ways to change your mind-set are probably to ďthink outside the boxĒ and then walk either in his footsteps or along parallel tracks - or a mixture of all. You might have to change your life and lifestyle around for a couple of years until his initial symptoms have ďmellowedĒ. When we now go to appointments or have discussions we usually both disagree with each otherís description of the situation - but 3 years ago we achieved our first breakthrough. We agreed to disagree. So we can both now have our own say without interrupting each other Ö a major improvement.

He still lives ďindependentlyĒ but now has daily Support Workers for his domestic chores and shift-based Carers for his other needs.

The difference is amazing: Weíve had a lovely 4 days together over Christmas - just the two of us. He wanted his ďworkmatesĒ to spend Christmas with their families. He was very calm throughout and seemed to enjoy the continuity.

The thing is that your husband is going through something that is ďtearing his mind apartĒ. The connections in his brain that have always functioned well are now mal-functioning (neurons are dying and synapses are disconnected) and he just cannot comprehend it - thatís one reason why Denial is often noticeable at the outset of this disease. ďIím ok, Iím fineĒ is a common early HD sentence.

I'm ok, I'm fine, I'm actually good ...

The longer you walk in his footsteps the more you will learn; the more you walk in parallel tracks the more you will learn from each other - and how you can both care and cope together. But I find that thinking outside the box is best for us: "How about trying it this way?" "What if we ...?" "Would you like ...?" "Where should I stick it!!?"

Hereís one link that I came across: http://hdmessageboard.com/showthread.php?t=5094&highlight=coping+husband

Best wishes Ö

.
__________________
New Day; New Outlook; New Challenges; New Possibilities; New Outcomes; New Successes
Allan is offline   Reply With Quote
Old 29-12-17, 01:10 AM   #5
Crystal
Approved Member
 
Join Date: Sep 2015
Posts: 232
Default Re: Finding it hard to care

Quote:
Originally Posted by PB View Post
Hi My Husband of 25 yrs was diagnosed with HD in May, there was no known family history so it came as a shock. Now looking back his behaviour has been odd for approx 5-6 years. I have been searching the Forum for some clues as to how you all cope- because to be brutally honest I am not coping. I no longer recognise him- and I really donít like him. I am struggling to change my mindset to ďitís the disease not himĒ maybe because we have had several years of his behaviour changing without knowledge or diagnosis.
I know it sounds selfish as I should be concerned about him, but I feel so trapped with no options and with a person whom I both love and totally despise. I no longer want to go out with him in social situations as his behaviour is embarrassing and just not him!! At home he has become so selfish, I am left to do everything, and itís exhausting. I can almost hear you all shouting- Itís the disease. I know this and yet it doesnít make things any easier. If he didnít have HD and this was just him, I would be getting a divorce.
Am I just being cold and callous feeling this way? He is oblivious of his behaviour and quite happy in his own world.
Iím 46 and to be honest feel like my life has been ended and that I face a pretty lonely and bleak future . I would appreciate some advice on how othe r people cope with their partners behaviours. At the minute Iím not discussing with him how he behaves as Iím sure it would upset him and he canít change it . Thanks xx
Hello PB

Sorry to hear of your struggle with trying to care for your husband. HD also came into our lives without knowing (at that time) of any previous history. Like Shiraz I armed myself with as much info as possible in order to try and manage the years that were to unfold.... and I echo everything (well almost Shiraz!)... that has been said. I believe we try for a long time to try and maintain the husband/wife relationship..... whether or not it has been a good one!.... and after many years.... in your case over 25.... and in mine many, many more years......there would have been many other struggles to overcome, even before HD entered our lives. So, in time, I believe we learn to relinquish the relationship we once might have had and we let go of that... because it has gone...however hard we try to resist the fact. Yes, you are probably right re divorce.....and some still do walk away....and even more want to, but never do. Allan has given a link to another thread highlighting the same difficulties that you are finding...and I, too, have had many, many, times of not wanting or feeling able to care any more. Of course, none of this may help you to hear, because what you have asked for is advice on how to carry on caring! One thing that may be an option for you which may help is to speak with your SHDA for your area and ask if she could put you in touch with someone else in your situation who may live within reasonable distance and would be prepared to meet with you on a regular basis to help support each other. I know this has worked for more than one person in my own area and great friendships have evolved. This may work as an addition to your local support group or instead of.... but sometimes on a one to one basis.... someone to meet with frequently, phone or text and share some humour with (yes it is possible!), may prove more beneficial than a support group setting at times...with no time restraints of set group meetings! Because even our 'regular' good friends will not have the understanding as someone else walking in our shoes! So your future.... and present may not then seem so lonely..you will have someone else who will listen and empathise.
I realise it's only a small snippet of advice.... but it comes from being tried and tested for me!
Best wishes
Crystal
Crystal is offline   Reply With Quote
Old 01-01-18, 11:15 PM   #6
Fola
Approved Member
 
Join Date: Nov 2016
Location: Petts Wood
Posts: 11
Default Re: Finding it hard to care

Hi PB,

I wish I had an answer for you and the perfect solution. It's so hard at times and I have very similar feelings. My wife's only been recently diagnosed (about 15 months ago) and it feels like a lonely and constantly uphill battle.

However, it does help to know you're not alone. Just reading some of the advice has been really helpful and it strengthened my resolve to get more help from SHDA adviser, push our GP and hospital for support and investigate other options more. And it changed a lonely and bleak New Year's Eve to a New Years Day where I'm determined to keep going and decide to do more.

So, after all that, the only advice I can give is to keep sharing, don't keep it bottled up, don't pretend and put on a show or brave face & continue to do your amazing best. You'll get better advice on here, for sure, but hope the conversation helps.
Fola is offline   Reply With Quote
Old 04-01-18, 04:34 PM   #7
Spanishgraeme
Approved Member
 
Spanishgraeme's Avatar
 
Join Date: Dec 2017
Location: Newcastle
Posts: 21
Default Re: Finding it hard to care

Hi PB

I'm fairly new on here myself but my wife and I have been coping with HD for a number of years now. We are both 50 and it sounds like things are at a similar stage.
My wife is two people. She is the wife that is loving, caring, pleasant, thoughtful and every bit the same woman that I married, nearly 30 years ago.

Sometimes though......and I never know when it is going to happen.......she is another person. Selfish, cold, argumentative, rude, down right unpleasant and absolutely NOT the woman that I married.

I've known the second version last for days or just a few hours. I can never tell.

I think that things are way more difficult because I have the two totally different versions of her to compare with eachother. It's almost like she is in control of her moods......clearly, though she is not.

The one thing that I have noticed and I hope that it will be of some help, is that if I keep her well fed........little and often is usually best. Things tend to go much better.

If, on the other hand, she misses a meal. This sometimes is unavoidable, if for instance, we are travelling. She is then, I've found, almost certain to take a turn for the worst.

If someone had pointed this out to me, years ago, I'd likely have found things much easier.

It's not always easy to keep to a feeding schedule mind. My wife will usually sleep for 20+ hours and then be awake for a similar length of time.
It's almost impossible to plan anything, when things are like this.
Today is a prime example. It's our daughters birthday today. She lives 100 miles from us. The plan was to head across there today and drop off presents etc............my wife didn't go to bed til 06:30 though...............day cancelled.

We have a house in Spain and should be living the good life, now.
When we go to Spain......she seems to be a little happier, generally. We still never go anywhere though. She still spends most days in bed and is up through the night.

I'm very thankful for the nice days.........those are the ones that I try to remember.
Spanishgraeme is offline   Reply With Quote
Old 09-01-18, 10:31 PM   #8
Jomhv
Approved Member
 
Join Date: Nov 2017
Posts: 12
Default Re: Finding it hard to care

Quote:
Originally Posted by Spanishgraeme View Post
Hi PB

I'm fairly new on here myself but my wife and I have been coping with HD for a number of years now. We are both 50 and it sounds like things are at a similar stage.
My wife is two people. She is the wife that is loving, caring, pleasant, thoughtful and every bit the same woman that I married, nearly 30 years ago.

Sometimes though......and I never know when it is going to happen.......she is another person. Selfish, cold, argumentative, rude, down right unpleasant and absolutely NOT the woman that I married.

I've known the second version last for days or just a few hours. I can never tell.

I think that things are way more difficult because I have the two totally different versions of her to compare with eachother. It's almost like she is in control of her moods......clearly, though she is not.

The one thing that I have noticed and I hope that it will be of some help, is that if I keep her well fed........little and often is usually best. Things tend to go much better.

If, on the other hand, she misses a meal. This sometimes is unavoidable, if for instance, we are travelling. She is then, I've found, almost certain to take a turn for the worst.

If someone had pointed this out to me, years ago, I'd likely have found things much easier.

It's not always easy to keep to a feeding schedule mind. My wife will usually sleep for 20+ hours and then be awake for a similar length of time.
It's almost impossible to plan anything, when things are like this.
Today is a prime example. It's our daughters birthday today. She lives 100 miles from us. The plan was to head across there today and drop off presents etc............my wife didn't go to bed til 06:30 though...............day cancelled.

We have a house in Spain and should be living the good life, now.
When we go to Spain......she seems to be a little happier, generally. We still never go anywhere though. She still spends most days in bed and is up through the night.

I'm very thankful for the nice days.........those are the ones that I try to remember.
Hi Spanishgraeme

Its been a while since you wrote this but hopefully you check on here from time to time. I'm new on here too and can relate to your post. My husband is in an earlier phase of HD than your wife by the sound of it but things are starting to get really tricky. I feel like we live with Jeckyl and Hyde. I too have noticed it's when he is hungry but also if over tired, in pain or is feeling too hot. Overheating is the main trigger for him. The thing is though it actually doesn't feel hot to the rest of us living in the house. It's not that pleasant to feel like you live in a freezer with the aircon blasting away or all doors and windows open. He rips off his shirt without a thought as to whether it's appropriate, much to the horror of my teeeange daughter. It feels like he literally turns into the Incredible Hulk.

Yes Graeme we are supposed to be living the good life, making the most of our own youth and health. I can feel the impact on my own health. I normally have low to normal blood pressure but some days with the stress and constant anxiety of living in a "fight or flight" state I can feel my heart racing and my blood pressure has gone up. I find it difficult to eat and sleep and getting out of bed gets harder each day. I cannot see a solution to this living hell and death at times would be a welcome respite though with 3 children that's just not an option.
Look after yourself when you can and if you need to vent I check this site regularly now.
Jomhv 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 03:32 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