As I sit here and ponder how this Christmas was so very different than any other Christmas before, I wondered if other caregivers, like me have observed how caregiving has taken over their lives...I sit in my living room which now houses a hospital bed, dirty clothes hamper, changes of sheets and waterproof bed pads and I walk to the kitchen where my counters are full of various non kitchen things like clean diapers, disposable change pads, toothbrushes and paste, medical paraphenalia and a commode chair that hubby all but has to be wrestled onto and it seems like all these little changes have silently snuck into our lives and taken over...how is it that 80% of my house isn't even being used? That my house seems more like a medical supply outlet than a home? that by the time I have gotten hubby up changed, cleaned up,teeth brushed, breakfast made and finally think about having something to eat myself it is 1:00 or later in the day? that I sit patiently listening to his every swallow silently hoping we don't have a choking episode? how is it that a good day is now measured in terms of whether hubby has a bowel movement, doesn't choke on his food or drink or doesn't grind his teeth? And all the while these changes are creeping into your life, our ability to enjoy things even little ones seems to fade into the horizon...I think about this more and more as each day goes by and wonder often when does it become too much? how long will conversations with myself in my own head suffice because hubby doesn't speak? how many more days will there be where the goal from the time you get up in the morning is to just make it to the end of the day without incident? So many changes, some subtle, some not so subtle and we as caregivers just keep piling the ever growing weight on our shoulders without noticing that our shoulders have started to sag...as I ponder all of the above I know I am not alone in my thoughts ... I salute all my fellow caregivers for bearing up as well as they can caring for their loved ones and wish all of you peace and comfort as we get ready to ring in a New Year...Cheers!
29scorpio, I could not remember what your plans were so I went back and saw that you might be admitting your husband to a LTC facility in late summer of 2016. I hope you are able to do that. For me, at-home caregiving consumed most of my life even though my husband was able to sleep in our bedroom, had no eating problems, was not incontinent, and needed no special medical equipment. I honestly don't know how you and others with spouses who are so severely disabled are still taking care of them at home.
29scorpio, that is exactly what my house looked like, and how I lived, too. As you said...the goal is just to get through until the end of the day. (And then to make it through the night.)
Thankfully, hubby stays put in bed 98% of the time and the 2% he didn't was probably more than 2 months ago so I am lucky in that regard...that being said, just because he doesn't get up doesn't mean that I am not sleeping with one ear open lol but then all of you here know what that's like, of that I have no doubt whatsoever...