Emilee’s Caregiver, Constant Flux, from Discomfort to Pride

Note to a friend on a blog site whose spouse was getting chemotherapy:

Hi…it (from diagnosis to the end) is like a marathon…where the course of the race keeps changing, so where you thought you had a feel for the race track all of a sudden the layout of the race changes, and sometimes or all the time, you are in a constant state of heightened alert for something to change.

Been doing that for about two years and sometimes I would get angry (and I felt I absolutely had NO right to get angry, as I was NOT the one with the cancer)…I would get angry at the flux, the not being able to let down our guard, at the umpteenth trip to the emergency room, at the fact that my wife couldn’t stay up out of bed for long without getting extremely tired, and at some point I gave up some…not all, of it …and started being thankful for every day I had with her. Every moment.

I did not give a s**t anymore and would be proud to push her in the wheelchair, proud of her new hair, proud to take care of her Pleurex drains (two tubes which when hooked to a vacuum bottle, would drain fluid from around the lining of her lungs), proud to be the designated bottom wiper at the end….I cleaned up all the stuff she would drop because of the neuropathy, and I always felt uncomfortable when someone said….and how are YOU doing, me, the caretaker.

I had decided it was my job and I would do it as best as I could and sometimes that was not good enough because I could not do anything about her depression…and that sucked…. but…I decided she was the main player…I was the supporting actor…and as tired as I would get it was nothing, simply NOTHING, compared to what she was putting up with and that’s just how it was.

In the beginning, I felt funny pushing her around in the wheelchair (and I was not very good at it, but became worthy of a tractor trailer trucker’s license for maneuvering)…but as I said, it became second nature to me….felt natural after a while and I would get annoyed at people who did not get out of the way when they saw us coming down the grocery aisle…lol…and she had a few choice words for people as well….. she used to say she got a birds eye view of everyone’s ass….and heaven help the ones that let their pants fall so they had a plumber’s crack showing…lol

One thing about transport wheelchairs. God bless them for their light weight and ease of folding so I could put it in and out of the car as much as needed. Here is the BUT. Because of the small wheels… curbs, large bumps, cracks in the sidewalk, etc., are hazardous in that the wheels get stuck or slam into a bump and do not roll over and the wheelchair stops VERY short. On more than one occasion, I almost threw Emilee forward out of the chair, and scared the s**t out of her, and me as well.  To the point of tears, hers and mine.

I never did dump her out of the chair, but she sure cursed me out a few times, especially in the beginning.  So, be careful. Be extra careful in tilting the chair backwards (slow and gentle, because that is also unnerving when you are in the chair and are tilted back), and don’t try to power your way over an inch high bump. The chairs with the small wheels usually will not make it.

Always slow and easy where the terrain is uneven or bumpy. Unless you want to get chewed out. The person in the chair is putting their entire trust and safety in your hands, serious responsibility, and you have to truly pay attention when you are wheeling them. No distractions…repeat for the men in the world…NO DISTRACTIONS. Watch the road.

Remember when we were kids, or adults, and let someone catch us as we fell backwards. That is the level of trust your loved one puts in the chair pusher every time they are in the chair. I was always on my guard (okay, okay, except when I screwed up).

Oh yeah…the Italian restaurants around here…I understand how you could miss some good restaurants…but we took out food so much that she was sick of Italian…Chinese and Italian…and diners…. she wanted something else…and my cooking was and is very limited…but I did try. I never did any of those boxed meals that come with all the ingredients, but I wish I had. Healthy meals with control over the flavorings would have been good for Emilee.  Taste buds were frequently undergoing changes due to the chemo.

Thoughts are with you as your husband is dealing with the chemo.

Neal Klein
Life After Emilee, on the loss of my wife to pancreatic cancer. I’m not accepting comments right now but please feel free to get in touch via my Contact page.