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

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Old 03-08-17, 11:34 PM   #1
Shabbychic
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Join Date: Jan 2016
Location: Middlesbrough
Posts: 14
Default Kicking and screaming

Hi, has anyone else experienced this, it's constant and all the time, especially when carers are here, it's so distressing, no medication helps, my daughter is in the final stages, I hate this f###### disease, I've started drinking, I'm loosing my identity, I'm loosing my daughter, I'm not ready to let her go, sorry for the rant, but this is the only place I can vent, I know you are all going through/been through similar, love and respect to everyone x
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Old 04-08-17, 11:45 AM   #2
Gabby
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Location: Berkshire
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Default Re: Kicking and screaming

Quote:
Originally Posted by Shabbychic View Post
Hi, has anyone else experienced this, it's constant and all the time, especially when carers are here, it's so distressing, no medication helps, my daughter is in the final stages, I hate this f###### disease, I've started drinking, I'm loosing my identity, I'm loosing my daughter, I'm not ready to let her go, sorry for the rant, but this is the only place I can vent, I know you are all going through/been through similar, love and respect to everyone x

So sorry cant imagine how hard it is for you rant away thoughts with you and your daughter and family . she could be scared and confused .

heres hoping for some peace for both of you xx

Take care

Gabby
xx
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Old 04-08-17, 11:34 PM   #3
Crystal
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Default Re: Kicking and screaming

Quote:
Originally Posted by Shabbychic View Post
Hi, has anyone else experienced this, it's constant and all the time, especially when carers are here, it's so distressing, no medication helps, my daughter is in the final stages, I hate this f###### disease, I've started drinking, I'm loosing my identity, I'm loosing my daughter, I'm not ready to let her go, sorry for the rant, but this is the only place I can vent, I know you are all going through/been through similar, love and respect to everyone x
Hello Shabbyc. This is so sad to read and wanting to reply with some sort of helpful advice and support.... but I feel unable to find a response that may ease the awful distress that you are experiencing. I know I, too, will have to face what you are going through as I watch my daughter pass through each 'stage' of HD. It destroys us too...bit by bit, each and every hour, every day, every year. Her father too, at a different 'stage' of his HD progression, different care needs, but same, same, Same HD. The words begin to haunt don't they! And we hate everything in the name of HD that robs us of ourself and those we love and care for.....and wine o'clock sadly gets progressively earlier each day.

I sadly cannot offer any help or advice regarding the distressing symptoms your daughter has now. Is this recent? (I maybe read this may not be so?) The only thing that comes to mind (clutching at straws here)! is whether your daughter may be suffering from pain and discomfort..... especially if the situation is worse when carer's are helping her? I don't know how this could be ascertained, so reluctant to have even suggested it really, but so wanted to try to think of some response to your question. I do hope if anyone has experienced this aspect of HD that they may respond to you with help and advise.

Love and respect for you too.

Crystal x
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Old 05-08-17, 09:08 PM   #4
Cathy
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Join Date: Jun 2016
Location: Surrey
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Default Re: Kicking and screaming

Quote:
Originally Posted by Crystal View Post
Hello Shabbyc. This is so sad to read and wanting to reply with some sort of helpful advice and support.... but I feel unable to find a response that may ease the awful distress that you are experiencing. I know I, too, will have to face what you are going through as I watch my daughter pass through each 'stage' of HD. It destroys us too...bit by bit, each and every hour, every day, every year. Her father too, at a different 'stage' of his HD progression, different care needs, but same, same, Same HD. The words begin to haunt don't they! And we hate everything in the name of HD that robs us of ourself and those we love and care for.....and wine o'clock sadly gets progressively earlier each day.

I sadly cannot offer any help or advice regarding the distressing symptoms your daughter has now. Is this recent? (I maybe read this may not be so?) The only thing that comes to mind (clutching at straws here)! is whether your daughter may be suffering from pain and discomfort..... especially if the situation is worse when carer's are helping her? I don't know how this could be ascertained, so reluctant to have even suggested it really, but so wanted to try to think of some response to your question. I do hope if anyone has experienced this aspect of HD that they may respond to you with help and advise.

Love and respect for you too.

Crystal x
Hi shabby chic, just want to send you and your daughter all the love, this disease is so ****** awful, am so with you, my husband has hd xxx
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Old 06-08-17, 09:24 PM   #5
Shabbychic
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Join Date: Jan 2016
Location: Middlesbrough
Posts: 14
Default Re: Kicking and screaming

Quote:
Originally Posted by Gabby View Post
So sorry cant imagine how hard it is for you rant away thoughts with you and your daughter and family . she could be scared and confused .

heres hoping for some peace for both of you xx

Take care

Gabby
xx
Thanks for your response Gabby I do think she is scared and confused, I can look at her and see the terror and confusion in her eyes, x
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Old 06-08-17, 09:31 PM   #6
Shabbychic
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Join Date: Jan 2016
Location: Middlesbrough
Posts: 14
Default Re: Kicking and screaming

Quote:
Originally Posted by Crystal View Post
Hello Shabbyc. This is so sad to read and wanting to reply with some sort of helpful advice and support.... but I feel unable to find a response that may ease the awful distress that you are experiencing. I know I, too, will have to face what you are going through as I watch my daughter pass through each 'stage' of HD. It destroys us too...bit by bit, each and every hour, every day, every year. Her father too, at a different 'stage' of his HD progression, different care needs, but same, same, Same HD. The words begin to haunt don't they! And we hate everything in the name of HD that robs us of ourself and those we love and care for.....and wine o'clock sadly gets progressively earlier each day.

I sadly cannot offer any help or advice regarding the distressing symptoms your daughter has now. Is this recent? (I maybe read this may not be so?) The only thing that comes to mind (clutching at straws here)! is whether your daughter may be suffering from pain and discomfort..... especially if the situation is worse when carer's are helping her? I don't know how this could be ascertained, so reluctant to have even suggested it really, but so wanted to try to think of some response to your question. I do hope if anyone has experienced this aspect of HD that they may respond to you with help and advise.

Love and respect for you too.

Crystal x
Thanks for your reply Crystal, she could be in pain, I wish she could tell me, I do give her soluble paracetamol every six hours, mainly to keep her temperature in check, she gets very hot with all the movement x
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Old 06-08-17, 09:34 PM   #7
Shabbychic
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Location: Middlesbrough
Posts: 14
Default Re: Kicking and screaming

Quote:
Originally Posted by Cathy View Post
Hi shabby chic, just want to send you and your daughter all the love, this disease is so ****** awful, am so with you, my husband has hd xxx
Hi Cathy, thanks for you reply, sorry that your hubby has HD, sending lots of love back to you x
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Old 16-08-17, 05:07 PM   #8
rita.smith
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Join Date: Aug 2017
Location: Essex
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Default Re: Kicking and screaming

I experience the same kicking and screaming with my sister who has HD, she also cries unexpectedly. She is unable to move by herself or talk now being in the later stages of HD and she does this to demonstrate she is not happy with a situation, or she wants something and I am not understanding so she becomes frustrated and very angry, its the only way she can show she wants to communicate. I wonder if that is what is happening with you both?
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Old 16-08-17, 09:53 PM   #9
Shabbychic
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Posts: 14
Default Re: Kicking and screaming

Quote:
Originally Posted by rita.smith View Post
I experience the same kicking and screaming with my sister who has HD, she also cries unexpectedly. She is unable to move by herself or talk now being in the later stages of HD and she does this to demonstrate she is not happy with a situation, or she wants something and I am not understanding so she becomes frustrated and very angry, its the only way she can show she wants to communicate. I wonder if that is what is happening with you both?
Yes, it is so frustrating for us both, I don't know what she wants and she can't tell me, I go through the thirsty, hungry, wet, soiled, bored, scared, and angry situations, and she still screams and kicks until exhaustion sets in, she knows I'm here 24/7, sometimes I think she hates me, with all the screaming but I still cherish every moment we have together X
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Old 18-04-18, 10:47 PM   #10
jonsalie
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Join Date: Oct 2006
Location: S.E. England
Posts: 41
Default Re: Kicking and screaming

Quote:
Originally Posted by Shabbychic View Post
Thanks for your reply Crystal, she could be in pain, I wish she could tell me, I do give her soluble paracetamol every six hours, mainly to keep her temperature in check, she gets very hot with all the movement x
How long have you been giving paracetamol every six hours? . Paracetamol given continuously over a number of days can cause pain, not prevent it. Might be worth checking out with your doctor.
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