Being a Caregiver is Hard....There's No Other Way to Say it..

Ok if you have the opinion that taking care of a loved one is easy or you would have no problem doing it... go read something else, because you won't understand unless you experience it first hand.  My husbands youngest half sister  made the remark at "the meeting" we had when this all began, that if it were her husband she would have no problem taking care of him.  I tuned out what she said from that point on because I knew she wasn't going to get it. One week later....one week, she was at my house visiting her brother who happened to be in the middle of a huge temper tantrum over a couple of dead fish in one of his fish tanks.  There was no consoling him...he was in full on tantrum mode...tears...sobbing...yelling...hitting the walls...Over fish. She at one point turned to me and said, "Yea I can see now where this can get to be a little overwhelming and frustrating." And thankfully his dad and step mom also happened to be there witnessing it. It was a beyond awful day...because this was round two...a repeat of what I had just experienced that morning (because he had no diet coke to drink).  But it was one of those moments where you look up and see the light from Heaven shining down and angels singing...because it was the moment Todd's family finally got it, their moment of acceptance.

I'm a fairly patient person...usually. Nothing in my lifetime....having all the patience and strength in the world prepared me for what we are going through now.  It doesn't matter how much you love that person, it's hard...very, very hard.  There is no other way I can describe it.  I have four kids. I was able to care for them just fine before they could do things on there own. I'm really just adding another person to take care of right?  No.... There is a huge difference between taking care of and changing a toddler, and taking care of and changing an adult. I foolishly thought I could handle this my myself....I didn't want help...I didn't need help.  And now I'm spent...my patience is gone....I need a break.  Your husband is suffering...and you want a break?!?  Yes I do.  And unless you are suddenly thrown into this position 24 hours a day 7 days a week you will probably not understand.

Because my husband is suffering from End Stage Liver Disease, he has all sorts of things going on that affect him.  His liver doesn't do the job it's supposed to which is to filter out toxins in the body.  So the toxins/ ammonia build up. One place they go to is his brain.  It affects his mood, it affects his coherence, it affects his memory....it affects everything. Most days I don't know what I'm going to be dealing with.  Some days he's ok, as ok as he can be.  He's not ok to drive and be alone, but he can have a normal conversation, he can work on things around the house that he wants to.  Other days, he is a little out of it, I have to repeat things a lot.  He has days he forgets how to use his phone. It's heartbreaking to watch. He gets completely worn out to the point of falling asleep anywhere he stops for more than a few seconds. It can be standing at the kitchen counter or sitting...anywhere. These days and nights are when we worry about him falling. He has come to experience at least one fall a week lately, just because he's so worn out and his balance is completely off.  These are also the days he is the most temperamental. In his head he can still do everything he has always been able to do...the reality...he can't. These are the days that are the hardest. He gets stubborn and ornery and he doesn't recognize his limitations. He can be extremely frustrating to deal with. He gets a lot of fluid retention in his legs, for this reason he needs to be in bed a lot with his feet up.  I can't make him do this. These are the times he is also up a lot during the night. There are some days I get less sleep than when I was working nights 40 hours a week getting home and to bed by 3am and waking up by 7:30 to get kids to school.  Like I said those are the hard days....they are inevitably followed by the easy days.  The days where he sleeps for 80% of the day....and sadly the days I look forward to most weeks.  I'm coming off of a period of about 4 days when we changed one of his prescriptions that was supposed to help him sleep...instead it made him wander the house at night... all night. He was up for about 30 hours straight from Sunday morning to Monday afternoon.  He swears up and down he slept...I was awake all night and can tell you he didn't.  We stopped that medication....he's finally sleeping....and my stress level has come down a few notches in the past 24 hours. 

There is nothing easy about being a caregiver...I have moments of peace when I can relax for a few moments.  But even those moments don't make it easier.  I wish I had some great and wonderful wisdom to offer. Truth is most days I feel selfish...I feel like I'm complaining.  Because at the end of the day he's the one that is sick, and he's not going to be around forever. It may sound silly...people say it all the time...Don't put off making memories.  When Todd came home after being in the hospital...I thought  we needed to make this Christmas special because it would possibly be his last...same with any holidays that followed....The thing is.....If we would have done it right we wouldn't have to make the "last" holidays the most memorable...they should have all been memorable.  Today is our 14th wedding Anniversary.... We are celebrating it the way we always have, nothing special.   A little earlier he was awake we told each other Happy Anniversary...I gave him a piece of licorice...he smiled, ate it,  and then he went back to sleep. The days will continue to be hard... I will still have days that I feel I am holding on to the very last strands of the end of my rope....I will still have days I have a little bit of peace....and life will go on for as long as it needs to.