When the light goes on and off. A Huntington's Disease story

The holidays are over, with the exception of the odd Facebook post of people posting some pics that they now have time for, now that all the hub bub has died down and normality starts to creep in. I'm not one of those people.

I don't celebrate the holidays, for religious reasons, although that is not what I'm writing about. I've watched from afar so to speak as people celebrated, feasted, drank to excess, professed love for one another, wished each other well for Christmas Day and expressed hopes for prosperity in the New Year. I say I watched from afar but social media brings it right into your home. Try as I might to scroll on by each colorful post along with Messenger delivering messages of peace on Earth and so on, it's almost impossible to avoid unless you simply shut down your computer. So the merry making continued. I just sat here for days waiting for the worst to happen.
It was going to be a wonderful time for me due to having a couple of weeks off from work, a time for recovery, I thought, from a shoulder injury at work. It's an injury that I'm beginning to think of as permanent, but that was the least of my worries. My wife has Huntington's Disease and is in the late stages, meaning that her days are numbered and try as I might, she will not recover and the spiral keeps going downward. Just when I think it can't get any worse, it does and so it did. What can you expect from the monster of all diseases?
Huntington's Disease can be violent and often times hurtful toward those that the afflicted care most about and so for many years the words "I hate you" have entered my ears too many times. I cannot count how many times I've heard those words, or other demeaning words meant to belittle and cut me to the core.
And so leading up to the holidays I had noticed a slight decline in my wife but that's nothing unusual since HD does that. It's a roller coaster ride where you think they are at death's door and then they come back. It's like the lights during a storm, sometimes they dim or even flicker but the power stays on or goes off for a moment then comes right back on. In my wife's case she would go for awhile, staying basically the same, the lights would dim and when she came back, she might not come back fully and soon it would become the new normal.
Over the holidays this was the case although it was a new kind of darkness, one that she won't come back from. It was difficult calling in the family and not getting them fully to be with you. It was difficult reaching out to online friends, who, again, expressed sympathy, but then seemingly forgot about what was going on and neglected to inquire as to her condition. Too busy they were, partying, drinking, making merry. Who wants that disturbed, right?
So now I know that it's any time, any day she could be gone forever. Her words are no longer understandable, just a faint mumble of nonsensical sounds, but as I lifted her to clean her she looked at me and said "I love you Kevin", with a tear in her eye, she said it. I crumpled inside as it was so clear and heart felt, And then she said the worst thing she could have ever said to me. Two words so unnecessary to me, that made me stop and try to explain to her why she needn't have ever uttered them. "I'm sorry."
She hasn't said anything since then. She just breathes deep and groans and gives the odd sound. I  talk to her like everything is normal as I don't want her to end, but I fear that it is finally here after 17 years.
So, I have come to grips with it. But yes, I am bitter. I'm bitter because of  those that denied she was ill, those that live a life claiming to care but don't really. I have also come to realize that yes, some people are loved and some are not. My wife and I fall into the category of we are loved, we were both loved by each other and we both gave love to each other.
There were two people who inquired in person and offered help and gave help. While the help was necessary in those cases it was also very appreciated and I know they will continue to inquire.
For the rest they should remember, when a person sees  the lights going on and off and they reach out, don't ignore them as they are terrified in the darkness. If you tell a person they are loved, you better mean it as it's a matter of trust and once you lose that trust it's very difficult to get it back.