The “C” Word – Day 80 Many roles of a spousal caregiver

I have discovered that when going through a long and difficult disease that spouses must take on many roles.  Each of these in and of themselves is a stressor – so when you have to be all of these in combination it is no wonder that we have “break downs” on a somewhat regular basis.

Cheerleader (aka encourager):   “Come on honey, you can do this!”, “Just one more bite!”, “Yeah!  You did it!”, “Just walk around the room one more time!”  From the initial discovery when we are trying to get them to remain hopeful to post surgery “atta boy” when you get them to do that one extra step to help them recover, our spouses need constant encouraging and reinforcing that they are moving forward.

Advocate (aka decision maker): I learned early on that I was going to have to take the reins on a lot of decision making.  That was evident when he was not sure about making an appointment with a surgeon that he had never heard of because he was sure there were no experts in our area.  Since then I have had to make or help to make many decisions.  I had to learn how the systems work in the medical industry in order to know what to do next.  In the hospital I had to maneuver my way around the medical personnel and help him get the care he not only needed but deserved.  This was probably the hardest thing to do as each shift brought different staff with them and that changed constantly.  George was too tired and too confused to make any decisions on his own and being with him 24/7 was the only way I could ensure that I knew exactly what was going on with his care every moment of every day in order to understand where he was in his recovery.  Now, nearly four weeks post-surgery, I am trying to get him to take over some of the advocacy.  While it is sometimes easier for me because I do not have a problem contacting his doctors, he needs to be urged and prodded to take those steps because he is still uncertain as to what he needs to do or should do. 

Educator : Arming myself with enough knowledge to know what the choices are.  Does he need more medicine or a follow up appointment?  What are signs and symptoms I should be watching for?

Nurse:  In the hospital I became the nurse, helping him to and from the bathroom… bathing… changing beds and pads and gowns… adjusting pillows… The only thing I could not do was administer most of his medications.  There were a couple of them that they allowed me to help him “get down” as they required mixing and giving to him with his meals which he received irregularly.  Once home I needed to keep an eye on the stitch line and when a few areas appeared to separate I had to dress them and keep an eye on them regularly.  I have to keep an eye on the edema and remind him to move his TED stocking periodically to make sure he doesn’t cause more damage. 

Pill organizer and pill pusher:  I have had to learn how to maximize his pill taking on a daily basis.  Trying to figure out how to get them in during waking hours if possible.  But, sometimes that is not possible so I have had to set my clock to wake me up at 2AM in order to give him a medication.  Setting my phone clock to go off up to five times a day in order to remind him it is time to take pills…. And then ensuring that he takes the right ones.  He has no idea what I am giving him or for what most of the time.  He blindly relies on me to make sure he is taking his medications and needs them set up so when he is on his own during the day he knows what he needs to do.

Master calendar keeper: Beyond the pill keeping is the need to keep the calendar for all appointments.  I have done this since the initial diagnosis as his brain cannot keep track of any of that.  “Just tell me where I need to be and when.”  He has no desire to keep track of his calendar.  I just need to go over it every few days and remind him of any upcoming appointments.  However, he often does not remember exactly when they are.  Today, for instance, he knew we had an appointment this coming Friday but he does not remember what time it is even though I have probably mentioned it a few times.   Oh, by the way, I do not keep track of calendar events via a smart phone or electronic method.  I am strictly an “old fashioned” gal who keeps a small calendar in my purse and transfers that to a desktop one at home from time to time. 

Physical Therapist (aka creative engineer and massage therapist):  The only PT he got at the hospital was to make sure he could walk enough to be able to get around at home and to climb a flight of stairs.  Once that was accomplished they signed off and said “he’s good to go!”  Once we arrived home the harsh reality sets in and he barely walks around and, though he can climb stairs, after two weeks at home that is still a taxing event.  He needs continual reminding to use his Spirometer, to move his joints and legs around so that blood keeps flowing.  I have given leg massages to try to move the fluids in his feet and ankles around.   I realized that there were things he could do with a “yoga strap” or flex band to help keep his ankles and feet moving more while he sits in his chair.  I am continually looking for ways to ensure that he still gets some activity and that there are things he can do while being sedentary to help in his recovery. 

Suffice it to say, with all of those things going on it is difficult to find the time to just “be me” or to just “be a wife”.  I know in a prior posting after one of my rants that I said “I just want to be a wife” – and that is so true.  I am sure I am not alone in this.  And this is something that happens in all marriages – that there are periods of time when you are constantly in demand for things other than that of “wife”… when you have young children you have demands that make it hard to have “couple time”.  This feels sort of the same… for now I have a “child” in the house that needs a lot of attention, requires a lot of time to care for as cheerleader, advocate, educator, nurse, calendar keeper, physical therapist, etc.  I am sure there are things I am leaving out (like chief cook and bottle washer) – and there are the normal day to day things to take care of (bills, household chores, laundry, yard work) which get pushed aside to some degree.   The scales of balance are tipped so far off it is no wonder I fall off the edge now and then. When something happens that throws me off course just that “little bit more” it is no wonder I rant and rave.  I guess that is my prerogative.   Most of the time I do okay – aside from being a bit tired it has become somewhat routine.  But it is also why I am trying to get George to start re-focusing and learning how to do some things for himself again.  Again, I have to be creative – or I have to create workable “lists” for him to work from so he is reminded about doing those things that are important for the day.  But each little thing I can get him to do for himself allows me to get back an extra few seconds in my day.  I need him to be proactive, not reactive – because having to react when things get bad totally throws off my balance.

My goal for next week is to start getting back more into MY routine which means getting in at last two small workouts a week until I am back to regular workout schedule.  This week I am still catching up on all the sleep that I lost!!