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Henchard

New member
Joined
Jan 17, 2014
Messages
1
Reason
CALS
Country
NL
State
North Holland
City
Amsterdam
Hello,

My name is Guy. I am 59 years old, English and live in Amsterdam, Netherlands with my 55 year-old husband. We have been married for only three years and I never dreamed I would ever be so lucky as to meet such an incredibly intelligent, intuitive and wise man, let alone live in a society where I would be able to marry him.

About 18 months ago my husband started dropping things and losing his balance but being optimists (or cowards) we kept on making jokes about getting older. However, (and I'm sure you know what's coming next) after some very painful and gruelling tests last July he was diagnosed as having ALS.

Even I can see how quickly it is going. He can stand long enough to help me transfer him from chair to chair. His speech is deteriorating rapidly and we used to have such long, fascinating, animated conversations. I am now unable to work because he needs someone here full time and now he has been taken into a care-home so that we can get some respite from each other after a terrible incident the other night when we both said and did inexcusable things.

Having read several posts on here, I already know that what I am feeling is normal; that gut-wrenching mixture of fear and anger and resentment and love and guilt and and and ...

And then I run out of words.

Thank you.

Guy
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,322
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Oh Guy, my heart resonated with every single word!

We haven't even been married 3 years yet, and I met this man, same age as your husband, and one of my real joys was the conversation. He would talk with much animation of arms and facial expressions, and would go on and on for hours and we would laugh so much. He was such an active man, we would take on stupidly big projects and attack them together and achieve things with so much fun.

Now he can barely stand and walk short distances with a walker and me helping. Arms are all but useless, can barely speak or swallow, and sleeps a lot.

He has some frontal lobe involvement which has caused behavioural issues, and that is such an extra challenge for us as caregivers, as it also robs them of empathy for others.

Welcome to a life support system here, but so sorry you have had to join our ranks.

Tillie xxx
 

ottawa girl

Moderator emeritus
Joined
Jun 14, 2012
Messages
1,506
Reason
PALS
Diagnosis
04/2012
Country
CA
State
Ontario
City
Ottawa
Welcome Guy.

I hope you get all the information and support you need on this bumpy road.

I am sorry you had to find us, though.
 
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