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Vet

New member
Joined
May 23, 2006
Messages
5
Reason
PALS
Country
CA
State
Alberta
City
Ponoka
Hi, Just trying to stir up some discussion about the aspect of giving a hug or showing affection. I've had this disease for six years now, I have lost the use of both my legs, and both my arms. There is one thing, I dearly miss, and that is to be able to reach out and give my wife a hug. We have been married 25 years , and I realize now that my wife is not a real huggy person. I used to be the one that was always reaching out and embracing her, and now that I'm unable to. I keep wanting to ask her to give me a hug and help me wrap my arms around her. She very much resents this. She is doing so much for me throughout the day, that to ask for a hug at the end of the day is the last straw. She wants to be left alone by the time she comes to bed. I have so many demands throughout the day that she has to do for me, that this is one aspect that she can control and say no to. I used to always sleep cuddled up to her back, with my arm around her. Now while I lay on my back, I so much wish I could put my arm out around her and feel are close to me again. But she had made it clear to me that it takes a lot of effort on her part and refuses to reach out to me herself. Even a hug in my chair, or a kiss, would mean so much. To me,it makes you feel appreciated and valued. Is my wife burned out? With nothing left to give? I have thought so, and so we've incorporated more caregivers to help with the load. I now have a gentleman, who helps me out through the week and every other weekend. Some days, my wife does not have to touch me at all. She has since this last year, taken on a job outside the house. This allows her to get out, meet other people, and do something else. But still physical affection is foreign to us,which I find sad. I have resolved that I will show my affection with the smiles I give, and the thankfulness and admiration I can display and verbalize. And we are very happy together, so long as I can not bring up the subject of phyisical intimacy. I am sure there are others who can identify. The trick in this disease is acceptance of things you can't do anymore and focusing on what you can.
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
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Hi Vet -

Sorry you can't get yourself a hug from your wife. Maybe holding or squeezing hands now and then might be a compromise. Can you arrange for somebody else to bring her flowers or treat on your behalf? I'm just thinking out loud...

Liz
 

mlb

Distinguished member
Joined
Jan 3, 2007
Messages
132
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Other
Country
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State
Victoria
City
Melbourne
Hello Vet.

Some people are not at all demonstrative. They love and care but have difficulty being obviously affectionate.

If your wife has problems with intimacy, then it would be very difficult to get her to give you a hug when you ask her to. Rather, tell her how much you miss hugging her and that you wish you could again. Perhaps like Liz suggested arrange for some flowers to be given to her and tell her how much you appreciate and love her.

Anna
 

ChrissyWho

Member
Joined
Apr 24, 2006
Messages
21
Reason
Loved one DX
Diagnosis
03/2006
Country
US
State
California
City
Moreno Valley
Hi Vet,
Your post broke my heart. I lost my husband on December 18th. Like you, he had lost the use of both arms and legs and like you he was unable to give me hugs, which was something that he had always loved to do. Like your wife, I wasn't as demonstrative as George was. Also like your wife, when I'd climb into bed after a long day, cuddling up to George wasn't always at the top of my list of things to do. Luckily for me I did come to my senses and hugged, cuddled and held his hand fairly often while we were in bed. But, I so wish that I had done it more often! I would give anything to have my Georgie here and to be able to hug him again. Given the chance I would hold him and never let go. I would love to have the opportunity to talk to your wife and tell her how regretful I am that I didn't hug, hold, kiss and just touch my wonderful husband more. It's hard and tiring being a caregiver but we can't forget that we are wives first and foremost. If your wife would like someone to talk to please have her email me. Good luck to you!

Chris
 

Poco

Active member
Joined
Jan 20, 2007
Messages
49
Reason
PALS
Country
US
State
Or
City
Bend
I understand how tired she may be, but the way my husband and I deal with it is we have date night at least once a week. I mentally set time aside and am not the caregiver but his wife that evening and it is just our time to be close, even if it is just watching tv or listening to music. He doesn't expect a lot from me the other days and I am able to get in touch with my intimate side on our date and it has taken a lot of pressure off and we both look forward to this time of just being in touch with each other.
Phyl
 

sufernan

Active member
Joined
Sep 11, 2006
Messages
66
Reason
Lost a loved one
Country
CA
State
Ontario
City
Toronto
Dear Vet,
Just like Chris, your message made me cried. I also lost my husband and if there is one thing I would like to change now is how overwelmed and tired I felt most of the time. If I knew then what I know now, I would not feel so sorry for myself .... I hope your wife will find her way to be filled up with energy and love and will hug and kiss you so much that you will ask her to stop!
Thank you for the reminder - I will hug my son many times today in your honor!
Sunny
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
I like the idea of flowers or some way to say "thank you." Anything that breaks us out of our normal routine sheds a little joy, which might cause even the most undemonstrative person to at least squeeze your hand. We hope.
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
If you are unable to do anything else send her an email with something like this picture below. You can find them on the internet or copy mine if you like. I know this cannot replace a real hug or real flowers, but maybe it can help a little.
God Bless
Capt AL
 

Vet

New member
Joined
May 23, 2006
Messages
5
Reason
PALS
Country
CA
State
Alberta
City
Ponoka
Thanks for your replies

Thanks for all your replies. Sorry I took so long to reply back. I accidentally hit the print button. When I was trying to shut down my computer after typing up my thread. I use a dictating device and a headmouse, an on-screen keyboard. But after that long message, I was exhausted and accidentally hit the print as I tried to shut the computer down. The printer wasn't on at that time, so I thought nothing of it. But a couple days later, when my wife used the computer, you're my thread printed out on the printer. I really didn't want my wife to see what I had wrote. She was very hurt that I would discuss our problems on the Internet. Sometimes I just feel trapped, and just wanna talk about things with someone. Anyways, your suggestion of flowers or her card haven't gone over well before and deftly won't now. And I am very reluctant to ask one of her girlfriends to talk to her about this, fearing that it might come back to me. Thanks again.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Sorry vet you're sure stuck between a rock and a hard place now. Hopefully in a few days she'll see that maybe she is being a bit unreasonable and for you to be asking advice from strangers means that you do care about her. Maybe she doesn't realise that even though the body is dead, the mind and soul are still alive and thriving. Hopefully she'll see this soon.
AL.
 

SoniaT

Active member
Joined
Nov 20, 2003
Messages
51
Country
CA
State
British Columbia
City
Vancouver
Hi Vet,

My mom had ALS, she loved giving and receiving hugs. When she couldn't lift her arms anymore I would just wrap my entire upper body around hers and give her a great big hug , and rub her back. She would laugh and cry at the same time. If I could have her back I would never, ever let go of her.

I am aware that love between mother and daughter is different from your situation, but I learned something from caring for her....I love my husband more every day, I hug him more, I tell him "I love you" more.

I take nothing for granted anymore.

I hope and pray that your wife will be able to give you what you need for your emotional well-being, it's not all about your physical/medical well-being.

Perhaps she has forgotten that she was your wife 1st., before becoming your caregiver.

Someone else posted that they would be happy to talk to your wife about the "hug" stuff. I would like to add my name to that list, she can email me anytime, ask me anything, I will do my best to help her, from one caregiver to another, one woman to another.

In the meantime, I am sending you a million hugs, gentle ones but filled with joy and hope, and kindness.

I'm Sonia Thomson my email address is: [email protected].

God Bless,

SoniaT
Vancouver, BC
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
Vet -

What incredibly bad luck with the printer. Surely your wife knows her true identity was not revealed.

Any kids or grandkids who can supply hugs? A sister, brother, mother, or friend? I know it's not the same but, unless or until your wife comes around, some kind of affectionate contact is better than none.

A pet to snuggle up with you? Still thinking out loud......

Liz
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
I think sometimes it is easy to get caught up in the loss and loneliness, especially since this disease affects the whole family. Since she may be grieving too, something that takes her mind off the present and future worries might bring you closer like you used to be? Just a thought...It's really hard for us to know without actually knowing you guys so some of this is like dancing in the dark. But we want you to know you're not alone. Regards, Cindy
 
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