Help, helper, helping. Help!

Repeat the word enough and it becomes meaningless; a hiccup of a word, either from indigestion or the sound someone makes when they take a breath while crying. This post is about that word, and how many ways in which its meaning becomes laden with so many things that are, well . . . unhelpful. This is a post for anyone who has had to take care of someone ill or in someway unable to care for themselves. This is about the silent cry for “Help!” while attempting to help, attempting to allow for help. But first . . . .

David is holding his own. He’s on his third cycle of Radicava, the drug that makes invisible any tell-tale signs that it’s working. It is the drug of faith, and even more so, it is the drug of trust. Has the progression of the disease slowed due to this drug? I don’t know. I trust my observations that say in many ways, he continues to progress, in others, there is a slowing down of the steady decline. We’ve transitioned him off of solid foods and for the most part, aside from the chocolate chip cookies with which my mom keeps him supplied, everything now goes through Peggy, the PEG tube. He gets more calories via a vanilla flavored supplement that while he can’t taste, smells pretty good to me at least. He’s also now using the BI-PAP throughout the night. Don’t get worried that these are clear signs of decline per se. In truth, we should have been inching in this direction all along, sooner than now. But sometimes one has to make decisions in favor of agency rather than what is cautionary.

The other news is that after a December stuck in a hotel, we arrived back home to a newly remodeled bathroom,

a reconfigured back deck and a second deck in the front of the house, a metal-roofed pergola,

new floors, french doors, barn doors, and in David’s gift to me, a very cool claw-foot tub.

The open shower is awesome, as David can now sit down and relax while he gets a hosing down. LOL! And without going in any needless detail, for you can use your imaginations, the bidet is a life-changer. For both of us. Seriously! Also, while I’m in the middle of painting David’s office, I’ll post pics of that when it’s finished. Suffice to say he’ll have a grey and sage green refuge in which to finish his book.

In the midst of that, however, we did get the chance to visit the Bonsai museum, (thank you Accessibility!), which proved a wonderful sojourn from hotel living. David’s had a long-held fascination with bonsai, so that we were able to see trees who began their training in the late 1800’s was fabulous! Here’s to non-human time!!!

So after big doubts as to whether or not we were going to have a Christmas, we came home on the 23rd, at which point my good friend, Joe, and I, went racing out to find a Christmas tree and decorate. This will be the one time you hear me say, “Thank goodness for Home Depot,” for there was this little tree just waiting for us.

Also in wait was the great PNW snow storm that covered everything in fluffy goodness. And . . . after almost 7 years of being married, we finally got one another wedding rings. <3 😀

All in all, a good way to close out 2021. Now for the psychology and philosophy. If you’re not into it, no harm, no foul, and you can stop reading here knowing you have an update on our David. Blessings to you in the new. year! (Special Note: A HUGE thanks to Joe Lohmar and Temple Fatjo for helping more than I can write of here. Didn’t have to ask- they just showed up! Our appreciation of you is boundless! Love to you both!!!) Read on if you’re game. 🙂

2022 has brought with it a great deal of reflection . . . for me. There is no denying that time is an archetypal underpinning of ALS. How much and how little, how fast, how slow, and of course, the where-ness of time itself. Where does time insert itself in the landscape of our living? For me, it’s mostly showed up in the middle of the night, with the dark woods right outside our window, as I watch David breathe. It comes in between each register of the BI-PAP machine. I’ve not been sleeping much. Like time, it’s in the deepest part of the night where I can come to terms with certain difficulties I’m having. Hence the title of this little buzzing blog.

I don’t find it easy at all to ask for or accept help. And this week, we have a telephone appointment with First Choice, an organization supplying home health aid, as we’ve been approved for 12 hours a week, or 4 hours, three days a week. This past week, for some reason more than others, I’ve been extremely emotional, quick to frustration, quick to tears and overwhelm. It was in the middle of the night, then, that I realized why, and it’s because of this unknown person who will be entering our home, taking care of David under the auspices of helping me. It’s because of time: the time I will now have and all that implies.

I cannot deny that this entire process has been difficult to the Nth degree. There is the physical aspect of it, the obviousness of which I don’t have to go into. But what’s been more difficult is the psychological and emotional side of this process: meeting with benevolence the changing roles and behaviors, our routines and rituals we’d established as a couple which seemed to have been dismantled before either one of us could take note, the loss of freedoms we both enjoyed, and of course, the ever running clock taken over by this insidious disease.

The step into welcoming a helper challenges an identity I’d come to rely on, and I imagine it is a shift many care-givers experience. If you’re not in control of care, even if for a few hours, what are you, who are you? For instance, I’ve become accustomed to spreading out errand-running over an entire week. I can reasonably, for now, leave David by himself no more that two hours, and that’s usually pushing it – it really should be for less time, and I expect that those two hours will be whittled down even further as time moves on. I have a set geographical understanding of our neighborhood. General grocery store: 5 minutes away. Target or home store: 12 minutes away. Pet food store: 7 minutes away. Puget Sound Veteran’s Hospital: 1.5 hours away. American Lake Veteran’s Hospital: half an hour. But should I or David want something from Trader Joes or Whole Foods, that has to be strategically planned. Where we used to range about the Olympic Peninsula, visiting new sites or areas, our world has become very small indeed.

With considering this Helper, I began to realize that no, I wouldn’t have to seek permission or blessing to spend those 4 hours doing . . . nothing (?). I could walk into my office and write. I could go for a walk knowing that he was in good hands and that I had my phone if needed. I could go to our favorite bookstore which happens to be 1.5 hours away. (I don’t know that I will, but the point is, I could.) To say that this brought on unidentified anxiety of time and identity would be an understatement. You can see the problem. Those four hours harken to a very real event that will not allow me to even write it here: but you know of what I’m speaking . . . the ultimate goal of this disease.

I am Gabrielle. I have a PhD which has come to mean nothing. I used to be a competitive figure skater. I used to be a writer and a hiker and a photographer. I used to have a passion for ecopsychology; now I can barely imagine going for a walk in the forest. I used to remember every dream, of every night. Now I’m lucky to remember snippets. I used to make art and I used to want to go places, see new territories, landscapes — all with David. Now I don’t want to leave the house.

The arrival of this Helper, with “help” ultimately, etymologically, being of undetermined origin (that’s an essay in itself), is the arrival of another transition; and it’s a transition I’m struggling to come to terms with for it is a contradiction. There will be help, but not by my hand. And if not by my hand, will I have the strength to trust the transformation of time, that will inevitably create — perhaps only temporarily — a void in my identity? Help means far more than rendering aid: It is a rebirth; it is the creation of time, space and place itself, and I’m not sure that will be an easy rebirth at all.