My Everest…

I was reflecting upon my recent conversation about HD with my family.  Respecting that everyone has their own thoughts and opinions and everyone will have their own journey with this horrible disease.  Some will want to be quiet and sit on the sidelines.  Some will be angry just at the mention of it,  some sad.   But at the end of the day what is everyone’s end game?   I think and this is just me thinking out loud is to live our lives out to our fullest and die peacefully at home, before hitting that long term care home stage. To be honest there are so many different faces and stages to HD that dying at home is a cotton candy dream.  We don’t need to put our spouses or caregivers through the grief of keeping us at home and the nursing home is where we will end up sooner or later.  We all know that once you get there no one and I mean no one wants to be there. 

Honestly it takes a lot out of people to come and visit you.  Why because it smells and it’s filled with people that are in various states of dying.  People are yelling, the TV in the common area is so loud you can hardly think.  If you turn it down you might get yelled at or your hands hit with a cane.  The residents there are in various stages of their own illnesses so you never know what they are thinking.  Thankfully the PSW’s and nurses are usually nearby to assist.  I’m being honest, when was the last time you saw a healthy person living there??  When it was time for my dad to go to a Long Term Care Home my mom was there everyday, sometimes returning in the afternoon to feed my dad. She even helped with feeding the other residents…their thoughts were you are feeding him why aren’t you feeding me, we are sitting at the same table!! The amount of times we were asked to step in and translate for a PSW or nurse only to hear from the resident how nice it was to hear someone speaking in their native tongue and to find out from them that they hadn’t seen their family or friends for quite a long time was heartbreaking. The staff try and make it fun for the residents, with activities and such. Still the residents all crave to see a new face come through the door as they have lost their sense of time and it goes by so slowly. However, It still wasn’t easy for any of us to go there but we did.  We did it for my dad and to give my mom a break too.  Once during the week and once on the weekend we went.  My brother went on another day during the week.  Hubby and I told the kids to make sure homework was done as we were going to see grandpa. Who I knew didn’t want to go, don’t get me wrong they wanted to see their grandpa but not in that setting, and therein lies the rub!   Everyone would like to go and visit their loved ones if it wasn’t in the LTC home.   Hence why none of my family want to end up there but realistically speaking the probability is high that  we will end up there because where else can we go?  Depending on how we present it could go many different ways!  Kudos to the people that work there !!