The “C” Word – Day 55 CAREGIVER

Caring
Able
Resourceful
Educated
Generous
Irreplaceable
Vibrant
Energized
Reliable

Being a caregiver for anyone comes with a lot of decisions and responsibilities.  Being able to make on-the-spot decisions, becoming educated about the person you are caring for, putting forth your best efforts to watch out for their well-being are just a few of the things you may encounter on your journey.  Every journey is different. 

The position of being a caregiver for a spouse is very different than caring for a child, parent or other adult.  Spouses often to not like to take direction from their loved one.  It can be difficult to enforce those very things that your spouse may need but he or she does not feel up to it.  They will more easily take direction from anyone else but their spouse.

Today has been a difficult day.  George has been very sleepy due to the pain medication.  He also has been refusing to try to eat most of the day.  Given the fact that he is receiving no nutritional supplements via his IV, it is important that he take in food by mouth.  It is also important for the food to make its way through his body so that it can learn to function properly again.  Logically he knows this.  But his brain is not functioning at 100% these days.  I tell him the same thing I tell his mom when she doesn’t feel hungry, “I know you don’t feel hungry but you need to eat.”

The nurses have been busy today and rather than having two patients in side-by-side rooms they are separated.  This means that I have rarely seen a nurse outside the room able to observe through the window.  It means that I have had to be the one to be available to help George when he wants a sip of water or needs help holding his wound while he coughs or wants the bed up or down.  He has become quite adept at using the control for his pain medication as a tapping instrument against the side rail to get my attention. 

I am trying to learn what is going on with his “new” body so that I can help as much as I can, but I am not the paid professional here.  The knowledge I need is to understand what the various machines do so that I am aware if something needs attention.  It also helps me to understand how to “coach” George whether it be to move, to breathe, to eat, etc. 

And then there is advocating which is a bit touchier at times.  For instance, it is now 7:10PM and his dinner has not been served.  I know he’s not hungry and he doesn’t care.  But when I spoke with the nurse just after shift change he made it clear that we need to make sure George eats even if he’s not hungry.  At 6PM I told him that dinner had not made it and he said sometimes they run a little late.  Another nurse said she saw the cart making its way around.  How can a hospital forget to get food up to its’ patients??  I sure hope there is a better variety for George to select from because all they have sent up today is a cup of broth – for breakfast it was chicken and for dinner it was beef.  George ate none of it.  Honestly, it does not sound very appetizing.  [Note:  I finally just asked the nurse for a popsicle or apple juice which he brought right away.  We never did find out what happened to his dinner tray.] 

The care for the first two nights was phenomenal.  Lots of attention.  If there was someone in the next room they were either definitely being ignored or someone else had to step in to help because his nurse was in the room nonstop for hours getting him set up.  There is supposed to be a 2-to-1 ratio here in ICU.  But they often get called to assist in other rooms or get called away for various reasons.  So it is important to almost always have someone in the room with the patient.  For the amount of money that it costs to be here (especially in ICU), you would think that it wouldn’t have to be that way.  Don’t get me wrong, the nurses have been very kind and patient and always explaining to me what they are doing or what they are giving him and what it is for.  They know that I am interested so that I can better understand how things are progressing.  But the fact that in ICU it can be an hour or more between checks at times is a little bothersome.  I have to be the reliable and responsible person in his life to ensure that he gets what he needs and that he does what is required to get him well again.

Vibrant and energized qualities are sometimes difficult.  I got only about one hour of sleep the first night he was in ICU, four hours the second and six last night.  I can feel the lack of sleep catching up with me a bit so will try to get at least another six hours tonight and not go in as early tomorrow morning.  I need to be there to feed him because the nurses do not do that and he is not yet sitting up enough to feed himself at least in the early part of the morning. 

I can also tell that my patience is being tested because I am frustrated that he does not feel like cooperating with the things he needs to do to get well (aside from sleep) – and that is eating, moving around a little bit, and keeping his eyes open for any length of time.  I know that will get better, I am hoping for marked improvement tomorrow since he is off the high dose of pain meds.  When I left this evening he was sleeping so he won’t be pushing the button much and perhaps some of the grogginess will be gone. 

I want my husband back and I am feeling somewhat helpless to get him motivated, to want it so bad he will try hard.  The nurse tonight said that I need to remind him that he went through a big surgery to give him back his life and he needs to work hard even when he doesn’t feel like it in order to get well again.  Right now it is taking all of my energy to keep an eye on him, to coach and encourage him, to love him. 

I am so thankful for my girls who have helped make sure that I get food now and then, who have helped George a little bit and who have kept me company throughout the week.  This is not one of those “fun” experiences but they wanted to be part of this process and that means a lot to both of us.