Tuesday, September 15, 2009

The days have been a blur. For someone who never drove to the city before I've become very adept at navigating the tangle of everyday commuters, potholes, traffic jams and weather.
George has passed the first critical days quite well but the realization that life is now an alien landscape over which he has no control is beginning to overwhelm him.
He has been given a suction wand the nurses call "Mr. Thirsty" and it has become his lifeline. Since he cannot swallow, this wand is a necessity. He has always been anti-drug and refuses to use the morphine drip button. The nurses have by-passed his hard-headedness by crushing up the pain medication and putting it through the PEG tube!
Like driving past a car crash and slowing down to see the carnage he can't seem to stop looking in the mirror he discovered in his bedside table. He stares at the warped and scratched image, gently probing the staples and poking at the stoma (the new permanent hole in his neck). He has wheedled a flashlight from a sympathetic nurse and is fixated on his new look. He is understandably very, very cranky. I however, am silently cursing that kind-hearted, flashlight carrying, nurse. I know he is one of those men who does better if he gets his knowledge a little at a time. Leaving him with the flashlight and no one to answer the resulting questions can take him down a road he need not go down.

I'm discovering a whole new world awaits me as "caregiver." Because he is diabetic and no longer eating solid food, the doctors have decided to take him off the oral medication he's been on and start him on insulin. The first of many objects (I'm sure) has now flown across the room. Oh, he is NOT a happy camper. He will need to learn how to do give himself injections and I've been told he will need help at home for the first few weeks. Thank goodness this is already something I know. His food and other medications will all be given via the PEG tube and I have been shown how to feed him, flush the tube and clean the site. Once I get the steps down pat I find this is something I do not mind doing. I am also now doing saline clean-outs - a method of clearing the trachea that requires squirting saline solution in to his lungs - something he will need to learn as well and evidently will become a part of his daily life. Wow- I KNOW no one told me about this!
In the next few days I will be shown how to do the deep tube suctioning of his trachea that will need to be done at home as well. This I am not too sure about (my first thought was eeeewwwww...) but I am sure this is definitely something no one told us about! It requires putting a 10-12 inch tube through the stoma, down into the trachea and suctioning out whatever is down there. Good Lord?!?!?, do they think I have an RN after my name? I somehow cannot see me doing this and I am more than willing to wait a few days to attempt it.
I've brought tablets, pens and pencils so that we may communicate. We now spend 30 minutes having a conversation that used to take less than 5 minutes. I find I am learning the art of listening with my eyes. While I am reading what he writes I find I must also read his face,search his eyes and watch his body language. We are once again children learning a new skill, eager and awkward, fearful but curious.
Watching him struggle in his new world and discovering all the care that will be needed I am beginning to question why after-care was not explained more in-depth. Saline bullets, suctioning, feeding tubes, wound care...things that a week or so ago did not exist in our world...things that no one mentioned......


  1. I am so sorry for all that is happening to you and will continue to happen until it becomes as natural to you as brushing your teeth. Even if someone had told you what was ahead I am certain you would have never been prepared for this world you now find yourself in...it is just the way it is. You will survive my friend, you will meet each challenge not because you have to but because you can....I am sure when someone needs you....you fulfill that need as that is part of loving your wonderful husband. You will develope a patience that you never new you possessed. Be strong, and know that at the end of this horror journey will be a new journey of love, understanding, patience and gratefullness.
    Don't let everything coming at you be so overwhelming that you are unable to breathe... slow down, one day at a time my friend. George needs you now in a way that he never has, and you never expected.....put yourself in his shoes and treat him the way you would want him to treat you. Many prayers and hugs I am sending you today and always......:-)

  2. Thank you Bernie for all your upliftng words. Your comments have given me such comfort and peace. Your support, words and kindness have helped do very much.

  3. I know how overwhelmed you must be feeling.
    But I just know you will be allright and able to get through all of it.
    The love you have for your husband will give you the strength when you think you just cannot go on.
    I speak from experience as there were three times in my life I almost lost my husband.
    The first time he came so very close to dying but he puled through and he was in the hospital in Korea for 3 months.
    I had to leave my daughter behind while I went there and spent every day with him in the hospital doing all I could for him ... he had wonderful Dr's and nurses but needed me there for moral support.
    It was so very hard but my love for my husband kept me going.

    Know that I care and keep you in my good thoughts and prayers.