It’s Fine To Not Be Fine

My wife is gone. Only 61 and lost to me. Now I have to survive without her, when to follow her seems the easiest and brightest possible path.
But I can’t be that selfish. I won’t allow the weakness and shortcuts to seduce me.
The only way I can do that is through honesty.
So when you ask me how I’m doing, don’t expect a “Fine” as a response. I’m not fine, and it’s okay to not be fine.

What’s not okay is pretending to be fine to avoid making others uncomfortable.

“I’m holding on by my fingernails.”

“I’m a mess.”

“I can’t sleep.”

“All the crying has the migraines back in full strength.”

“I’m lost and rudderless and I don’t even want to get up off the toilet sometimes.”

I’m going to live my truth until my truth moves on, then I’ll live my new truth. It’s been four days. I’ll blink and it’ll be five weeks. I’ll take a walk then it’ll be seven months.

I WILL be fine. Someday.

But today, I’m not fine, so please don’t expect me to say that I am.

Surreality

It was just last evening, about 21 hours ago as I write this, but the memories have a detached, surreal quality to them, as though I’m watching them happen to someone else.

I was sitting in the cheap wingback chair about four feet from Jacquelynn’s bed and had been texting back-and-forth with the hospice nurse/case manager about getting Jacquelynn evaluated for 24-hour observation and care, due to her declining status.
Awaiting the arrival of the weekend nurse, I was beginning to doze and decided to give up waiting and take Sky home for his evening meal and walk. So I rose creakily from the chair (which is more comfortable than it looks) and stepped to the bedside to kiss my beautiful bride before leaving. Just as I approached, she gave a small hiccup of a final breath, and left. I noticed her silence immediately, as she was not breathing quietly in her 3+ day-old sleep, and I listened closely for another breath before pressing my ear to her still and silent chest.

Telling Sky to stay with Mama, I strode quickly to the nurse’s station and brought the duty nurse back to her room, explaining that I think she had passed, which she confirmed after a brief check. Respectfully and tearily, she excused herself while I knelt by the bed and wept. Sky crowded in next to me after the nurse left the room (he adores her and always sniffs the evidence of her dogs all over her clothes). But, just as the nurse was calling the hospice for me, I had calls to make myself, which I did robotically and almost tearlessly.

Then the texts.

The callbacks.

By now the weekend nurse was there and cleaning Jacquelynn up so I was sitting in the hallway with Sky, texting and answering calls nonstop while residents strolled by mooning over the cute dog (they’re going to miss him for sure) and staff expressed their condolences (a word I’m growing to dislike). All the while, I have to keep a grip on Sky even while texting because my normally chill dog wants nothing more than to get back to his Mama’s bedside. Every time I drop the leash for a second, he’s on his way back to her room.

When my patience with the telephone runs out and I just can’t spend another moment trying to talk without losing it, we return to room 321, and the nurse has just finished cleaning Jacquelynn up. I notice the remnants of her catheter in the trash can then loiter a few moments at her side, noting with detached concern that her eyes won’t quite close all the way, which is how she had slept these last few days as well. Sky whines a little and lays resolutely at her bedside, where I will soon have to order him to stand up to leave. His loyalty and dedication to her astound me. The nurse tells me that the chaplain will be in soon, and she’s going to call the mortuary for me.

But I’m finished here. Jacquelynn left the room an hour or more ago, and it’s time for me to do so as well. With a final, truly final kiss, I put on my coat and all but drag Sky from the room.

It’s real. It’s one hundred percent real.

When my heart and brain finally meet on that truth, I’m in for a rough few days.

Compliments

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.

Down twenty-nine pounds in six weeks.

Seventy-nine pounds.

One hundred eight in late October, and today just seventy-nine.

Down twenty-nine pounds in six weeks.

Sky and I spent the whole day with Jacquelynn on Thanksgiving. Ten hours, broken only by taking the pooch for a couple of walks and running to the gas station for snacks. Jacquelynn slept almost the entire time, but she knew me and smiled as she ate what little she was able to.

But I wasn’t going to miss spending our last Thanksgiving together, just as I won’t miss Christmas if she’s still here for it.

Which seems unlikely.

Down twenty-nine pounds in six weeks.

While there is still familiarity and comfort in my company, I don’t believe she has really recognized me since Saturday, although there is still familiarity, as though I was an aide or nurse she was comfortable with, but no bright light and smile of recognition. No kisses or strained, barely understandable “I love you”s.  Nutritionally, Jacquelynn is only averaging a single serving of yogurt each day, plus whatever juice she’s willing to drink and the pudding they mix her meds with.

I’m no Ferrigno, but I can lift her easily when I need to move her in her bed, so I asked that she be weighed (which happens the first week of each month anyway), and the nurse called me today as I had asked to tell me she was down to seventy-nine pounds.

Down twenty-nine pounds in six weeks.

Selfish as it seems to me, I’m struggling mightily this week with impending loss. My family and friends all remind me that there is no way to truly be ready for this; that all the preparation in the world can’t prevent the event from crippling you when it occurs. The only thing to do is allow myself to be human and feel what demands to be felt, to flex like the palm trees in the face of the hurricane, bending so as not to break.

I can only hope to avoid the break; to be stronger than I feel, because to be honest, I feel as though I’m already broken. Like I’ve been broken so many times and glued back together so many times that the crumbling just can’t be stopped anymore.

The pieces are just waiting to fall apart one last time.

But I’ll pick them up again, and with some help, put them together in the right order. It barely seems possible now, but I know I will. Life isn’t done with me quite yet.

Even if it is just about done with Jacquelynn.

Down twenty-nine pounds in six weeks.