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Old 31-08-16, 10:41 AM   #1
Eygpt46
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Default Feeling lonely

Hi
My husband has HD. He is going back to he's childhood when I am at home he follows me around the house and always wants to be hugged. When I come out of the toilet he is standing there waiting. Some times I don't feel like he's wife just some one who looks after him and its very lonely. Is anybody else like this or just me.
Thanks
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Old 01-09-16, 08:23 AM   #2
banda
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Default Re: Feeling lonely

I could have written the identical post some months ago....my hubby has HD too and he was following me around etc. I have to say that it seems to have been a bit of a phase and he does it less so now....I guess it may return in the winter when I/we are in the house more...will wait and see. But yes couldn't agree more about the change in role to carer and the loneliness and distress it causes. You are not alone...I have what I call weepy weeks over it all.
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Old 01-09-16, 08:42 AM   #3
Rainy69
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Default Re: Feeling lonely

Hi

I don't post much, but like to read the subjects that come up.

I am on the flip side of Huntington's, as I am the one with the gene. I have some slight symptoms such as balance issues. I am finding it harder and harder to get motivated to do anything, but I also feel incredibly lonely, as I feel I cannot expect others to understand my memory problems and the loss in conversation, and therefore don't have "friends". I miss my husband something rotten and try to keep a hold on it when he is at work or out and about, so I guess I see your husband's side of things. My dad was the same with my mum, turned up at her work on particularly bad days, but they got through it.

I feel terribly tearful some days knowing what lies ahead for me and my family.

Best wishes to you.

Rainy
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Old 01-09-16, 09:59 PM   #4
banda
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Default Re: Feeling lonely

Good to hear from you Rainy...total empathy with you...and my hubby who is gradually losing his speech...but I taxi him to as many of his previous activities as I can and especially where some male company can be found....just know it is increasingly difficult for others to interpret and can appreciate the increasing isolation both you and hubby feel. Please stay in touch and help us carers to support you and hubby to reduce the upset you feel too. Always want to learn what helps.
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Old 01-09-16, 10:26 PM   #5
Rainy69
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Default Re: Feeling lonely

Thank you Banda

I really shouldn't complain, as I am lucky really. I am working part time and things are really only at the beginning for me, but I am very conscious of mixing words up, forgetting names of things and repeating myself - this is what is stopping me from socialising, because I am so conscious of the changes in myself. I am very clumsy, dropping things, knocking things over and I feel like I am steering a ship with a wonky rudder when walking, but hey I can still walk, talk and eat - so hey stop complaining Rainy and get on with it eh?😀
Good days and bad days - need to take them as they come.
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Old 14-09-16, 03:48 PM   #6
Gabby
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Default Re: Feeling lonely

Quote:
Originally Posted by Eygpt46 View Post
Hi
My husband has HD. He is going back to he's childhood when I am at home he follows me around the house and always wants to be hugged. When I come out of the toilet he is standing there waiting. Some times I don't feel like he's wife just some one who looks after him and its very lonely. Is anybody else like this or just me.
Thanks
As others have said this is the case and sometimes it can be worse with frustration and temper . I think it feels like all on your shoulders where once you bounced off each other to make decisions now its' just you making them and doing everything it can be scary and overwhelming and their empathy gets less and less so you don't even feel appreciated just taken for granted ( though thats not the case) its hard not to think that .
Rant away here we understand
Gabby
xx
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Old 14-09-16, 03:51 PM   #7
Gabby
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Default Re: Feeling lonely

Quote:
Originally Posted by Rainy69 View Post
Hi

I don't post much, but like to read the subjects that come up.

I am on the flip side of Huntington's, as I am the one with the gene. I have some slight symptoms such as balance issues. I am finding it harder and harder to get motivated to do anything, but I also feel incredibly lonely, as I feel I cannot expect others to understand my memory problems and the loss in conversation, and therefore don't have "friends". I miss my husband something rotten and try to keep a hold on it when he is at work or out and about, so I guess I see your husband's side of things. My dad was the same with my mum, turned up at her work on particularly bad days, but they got through it.

I feel terribly tearful some days knowing what lies ahead for me and my family.

Best wishes to you.

Rainy
Thank you so much its so good to hear the other side too , must be hard for you i wish my hubbie would say more of how he feels it really helps when he does
Gabby x
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Old 14-09-16, 11:53 PM   #8
Cupcake
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Default Re: Feeling lonely

Feeling lonely is definitely something I could relate to, loss of my hubby, and yes he went through the phase of following me round, if I popped out and was not back by the time he thought pacing around from the lounge window to the front door, and being very agitated when I got back, the side of being impatient I guess.

rainy69

Lovely to hear from you on the other side, your information of how you feel is so invaluable to us as carers, to understand how you are feeling, amd the fact you are still able to describe all this to us. Lily who comes on is on the same side as you, amd she too regularly tells us of how she is, amd what she is finding difficult, my hubby was never able to share with me, his fears, frustrations and emotions of HD.


Take care xxxx
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