February 17

Just a few days since our last post…  We didn’t attend the Lung Transplant meeting on Tuesday and I didn’t go to therapy on Wednesday.  Some days are such a struggle just to get up, shower and dress that I can’t make myself do it…  I did go to therapy today!

Bob wrote a piece about being a caregiver and I told him to post it on the blog.  Both of our lives have been turned upside down and it is important for him to get his feelings out too.  He is my hero!!!

Life of a Caregiver

I decided to write a little about my life as a caregiver, but it is more than that.   I’m also a spouse of 42 years, a father, grandfather, have a dog that needs attention, home (rv) owner, part-time mechanic for two vehicles, and, and, and….. 

My week is currently a little full, but also allows me time for my greatest addiction… the computer and the internet surfing. 

Let’s start the week with Sunday, primarily because we seldom go places on that day, and that is the day I sort her meds for the week.   Patient is currently on about 15 different prescription and supplement meds; some are taken once a day, some more.   One of them is only taken on M-W-F.    We use three pill sorters for am, noon, and pm.  The morning pills are broken up between before and after food.   A fairly simple process, but it needs to be exacting to avoid duplication (overdose) or to avoid missing an important med.   Then, the daily activity of getting the meds to the patient.   Whew….  Lots of work. 

The biggest single task for me is oxygen management.   We have a concentrator that runs on house power, and then bottles that provide for some mobility.   Early in the disease, she was on 2-4 liters per minute of oxygen, and that allowed her to use some of the smaller bottles with a portable backpack.   We even had a small concentrator that plugged into the car 12v system.   For the past 6 months, it has rapidly progressed to only the house unit, and larger bottles that when used at 10 liters, last about 40 minutes.   At 15 liters, even less time.  

She currently is using 8-9 liters resting, and 15+ for showers and dressing.   Often, she uses two cannula’s for this to get some extra oxy for a few minutes.   Moving from the concentrator location to her seat in the living room is about 10’ and this activity, even if the concentrator is not on max flow, can cause her oxygen saturation levels to quickly drop to the 70% level (needs to be in the upper 90’s).  Hence, she really needs constant attention to keep her at the correct flow level.   Turn it up, turn it down, turn it up again, exchange empty bottles for full ones, untangle the hoses, turn it up and down again, and ..... 

Lately, because of the lack of energy, she needs some assistance in dressing, especially in putting sox and shoes on.  But, she charges on, hopeful for a lung donor. 

Oh…  I forgot…  In the middle of all these events, the dog needs to go out..  and needs attention.   Then its time to fix a meal.   Of course all of that is after I go to the store for groceries, do laundry, get gas for the car, drive her to physical therapy, and then I need to take care of some of my personal needs. 

I’m a guy, and for the most part, my life has been pretty good….  What is amazing to me, is that my wife has done stuff like this all her life.  The multi-tasking to take care of me, herself, our son, a job, the house, the shopping, the laundry, and all that stuff that I took for granted. 

It’s payback time..   But, this guy is not complaining.   I’m Looking for 43 years and beyond. 

The Caregiver..   ;-)