Destination unknown: A Huntington's Disease Story

     I miss her.  Yes, I see her everyday with the exception of a couple of days while I was ill with a virus.  I stayed away to protect her, but I miss her, the essence of her, her presence. I miss what once was but I also miss caring for her. I miss her scent, and even all the troublesome things she would do. The last three months have been horrific and up until a few weeks ago when we began treating her with CBD oil I really felt I was fighting a losing battle, but with those improvements have come decisions as to where do we go from here?
     For those of us in the HD community, and those of us as humans in general it is something that we all struggle with when a loved one becomes ill and that illness is terminal.  Most of us though, tend to think of nursing homes as a place that we may end up in when we grow old, especially if we don't have a family that is able to care for us.  For most of us even the thought of dealing with someone with dementia is too overwhelming to even consider. But what if you're not old? Deciding what to do is even more difficult.
     But soon a decision must be made.  I was informed of an impending meeting this week on what will happen to my wife. She has improved to the point I guess that the hospital feels there may be nothing more they can do for her.  Mind you, I'm only speculating as to the reason for this meeting, but I'm most likely not far off.  Her doctor has assured me that nothing will happen quickly but my mind won't stray from the possibility of making hard decisions.  These are decisions that won't come without pain, regardless of the outcome.  
     I've listened to friends, professionals etc. and most of them point to a direction I really don't want to take.  I find it difficult to even say it out loud. I've even asked my wife on several occasions her wishes and she always remains firm that her wish is to return home.
     It's not as simple as that unfortunately.  
     There are many factors to consider, as we all know, but in her case, to keep this personalized and tailored to her alone, I have to think of what she will require as far as care is concerned, not to mention equipment and regular supplies that are medically necessary. The more I think about it the more overwhelming it becomes, but am I willing? There's no question that the answer is YES!
     You see I made vows that to this date I have kept.  I have kept them willingly, and although the actions at times were not easy, they were easy decisions.  Unlike this one...this one is hard because it will require resources. It will require a group of people to piece it all together and fine tune it so that it works for everyone, not only for my wife, although that will be the main goal and the reason for it all.
     So many would walk, I know that. I also know there is no shame in doing so, after all, it is overwhelming to say the least but for some reason I keep thinking about a stove. It keeps popping into my mind.
     When we first purchased our home, we had only been married for about a year and the down payment along with renovations had drained us. The home had a beautiful kitchen but there were two holes that would not be able to be filled. The space for the stove and the space for the dishwasher.  My wife was not concerned about this as she was so happy to be moving into a place of our own.  Secretly I managed to put together the money to purchase the two items and have them installed the day before we were to move in. My wife owned and operated a home for seniors and we would be moving them into our new home the next day. I couldn't see her being able to function without these items but she insisted that she could use a hot plate that we had been given as a wedding present and she was used to washing dishes by hand.  Nevertheless, I made the purchase and they were installed.  When she arrived at the house her pleasure was over the top. Her kitchen was complete and so of course I received plenty of kisses and hugs.
     That stove lasted 23 years and this woman cooked three meals a day on it for many people. She would continue to cook for an additional 7 plus years before it was no longer possible for her to do so.  She was actually sad to see that first stove go out the door when the new one came in.  She always attached herself to objects like they each had a story to tell...memories to share.  And oh the meals she would cook.  Each one was her own, some of them now lost forever, some shared and now made by friends who remember her for them.
     She cooked for me, she looked after me and stood by me when I was at my lowest.
     She made sacrifices.  She took my parents in when they were old and gave up her kitchen that she loved so they wouldn't have to handle stairs.  She cooked for them, she cleaned for them and she was their friend.  She hugged them and held them when they were feeling down.  She entertained them and spent time with them.  She did things with them like going to dances, trips and games.  She was interested in what was going on with them and considered their friends her friends. In the end all she got from it was ridicule and zero thanks.  
     She bore three children for me.  She was a wonderful mother and was always involved in her children's lives.  She treated  their friends with respect and always had something baked to offer them.  She was involved early on with school and even volunteered in the classroom. During this time she was busy running and actively working in her home for seniors and she also owned and operated the local canteen for several years.
     This short telling of her story is only but a snippet of what she once was and as long as she is alive that is what she is now, it doesn't just leave you. 
     So to put her somewhere else other than home is very difficult and disturbing for me.  It makes me angry due to the unfairness of it all.  It is a decision I wish I didn't have to make, but it is mine to bare and live with. 
     And then there's that damn stove.
     She cooked for me, and never complained once.