With her pain and agitation increasing, the hospice staff and I have coordinated with the lead nurse on the Memory Care ward to move Jacquelynn’s comfort meds from strictly PRN to a regular thrice-daily schedule with PRN intervention. This also solves the night shift’s propensity to just close her door and let her moan and shout, paying her no more heed than to occasionally look in to make certain she hasn’t fallen from her bed again. So, she’ll be getting her roxanol and ativan at 6:00 a.m., 2:00 p.m., and 10:00 p.m. moving forward. Knowing that, once medicated, Jacquelynn will simply sleep through whatever disturbances come her way, I’ve rearranged my visiting schedule to attempt to catch her at the very end of her medication cycle, hoping to rouse her enough to at least eat a little. Thus far, my success has been nonexistent; she’s only been able/willing to eat a couple spoonsful of yogurt and drink perhaps an ounce of juice in the last two days. My hopes are that as her body adjusts to the new cycle, she’ll wake long enough to eat a little at least once daily. I am prepared for the “if not” scenario, having long ago decided that keeping her comfortable was, at this point, more important than keeping her here longer than she wishes to stay.
Adjusting my schedule to fit her needs is nothing new, of course, and it always seems to meet with some level of shock and amazement among the staff.
It’s become quite common as new aides and nurses come on board; last night as I was explaining my new schedule to the two aides, both quite young and new within the last few weeks, on Jacquelynn’s unit tonight, one stops me with her uber-important input:
“You’re a great man. I just have to say it, but you’re a great man.”
I’m not sharing this to pat myself on the back. Honestly, I wish they’d stop saying this and things like it. I understand it, of course, their need to comment on what they see as an unusual dedication and love. So few people here get visitors at all, and only one other receives anywhere near the attention Jacquelynn does, from her daughter who is here at least as often as I, and she also is now under hospice care as her condition deepens and her prognosis fades.
For my part, I simply cannot conceive of doing any less, and still often feel as though I don’t do nearly enough. Much though I understand the need to live my life, especially as I can now finally search for work once more, I still harbor a great deal of guilt for every hour not spent at Jacquelynn’s side.
At the same time, making myself come here is getting harder every day. Not because she doesn’t really know me anymore, and not because I know how very limited her remaining time is, rather simply because I can no longer see her as she was, full and vital and bursting with the love of life in all its forms. All I can see now is less than 80 lbs of skin and bone, sleeping open-mouthed in her adjustable bed, her arms rising and falling as though reaching for some unseen savior, left leg constantly moving, seeming to try to lever her frail form from the bed to follow it. Sometimes I feel that I can hardly bear that sight for one more moment. Then I pack another hopeful bag of yogurt, pudding, and juice, strap the dog into his seatbelt harness, and get back in the car again.
So I’m no hero and no paragon to be upheld and emulated. I’m a flawed man still desperately in love and terrified to miss a moment with my wife. Even though she no longer recognizes me.
My single greatest fear is THAT telephone call. I don’t want to receive that call. I want to be right here with her hand in mine when she lets go. Because if I have to drive here knowing she’s gone, I won’t be able to see or hear for the bawling. I’ll be a basket case and the (groundless, I know, but I can’t help it) guilt for not being at her side will be destroying me the whole time.
Fear and guilt and paranoia are nothing to hold up as some great example. They are, however, quite easy to mask as something far nobler. Forgive me for hiding behind that illusion, but it’s one of the things I rely on to keep me going day-to-day.