I am so thankful that it’s not a week ago tonight.
It was at this time that Will was going through the active dying process, which was way more painful than it should have been and went on too long before he got adequate relief. I can’t blame anyone for it, although I wish the on-call hospice nurse had had a little more fire in the belly and made transportation to the hospice facility quicker. As it was, nothing could have altered the final course of events, but did he really have to suffer that much? He did die peacefully, however, and for that I will always be grateful to God and the wonderful hospice facility nurse who medicated him well and allowed him to slip away in comfort.
To say that I miss him terribly would be the understatement of the century. I keep thinking I hear his voice, or expecting him to come in from the patio where he smoked his “medicine”. Right now I have his ashes in a beautiful wooden urn resting right on the desk where he built his model airplanes and ships; I know he’d like that. I find myself over there quite often, caressing the wood and cradling it in my arms as if I were embracing him. It feels like it’s the closest I’ll ever be to him again…at least in this life.
I talk to him all the time too, just like I did when he was here. I listen for his responses and for his inimitable laughter, and sometimes I can practically hear them. I feel as though he is very close…but then I look at his empty chair and the reality of it all hits me again. I’m not married anymore. I am a widow. And I wonder what the hell life is supposed to look like now, when being married is all I’ve known for thirty-six years.
But I don’t suppose this is the time to worry about all that. No, we’ve got to get through the funeral planning, and paying for it (who knew that simple cremation and funeral arrangements were so freaking expensive?!) as well as the service itself. It’s set for the eighth, at 11 AM in our church. It’ll give us enough time to get daughter Mindy back in the States and a little breathing room, as we are all worn out and still have to carry on with life.
I remember taking a vow to love and cherish Will “until death do us part”. Nobody knows what that’s like until they go through it. There’s nothing that really prepares you for this reality.
Passed away peacefully at 3:10 AM on July 13, 2016. I was there when he breathed his last, and got to hold his hand one last time as it happened.
Obviously I am beyond sad, and I keep thinking I hear his voice and waiting for him to come back into the house after smoking on the patio. “Hello, beautiful,” is what he’d always say, as if he hadn’t seen me in days.
God, how I miss him.
That is all.
As if I needed a reminder of how much my life has changed in the past few years, I got my Medicare card this week.
Technically I can’t use it till October, but here it sits on my computer desk in red, white and blue. I was surprised to get it this soon—I thought one had to be on disability for two years—but I guess the Social Security Administration counts all the way back to the time one becomes eligible for benefits, not when they start drawing checks. Works for me.
For some odd reason, however, the arrival of my Medicare card has brought back memories of 2014, when I was reeling from the losses of my career, my home, my way of life. I really didn’t want to revisit that trifecta of unfortunate events; in fact, I do my best never to even think of those awful months because I miss my old life so badly sometimes I can almost taste it. Especially now, when it’s high summer…I used to spend so much time in my big above-ground pool, floating around in the sun and feeling the cool water swish gently over my tanned arms and legs. There were deer romping across the yard, roses blooming in my garden, grandchildren playing on the lawn, meats grilling on the barbecue. I paid dearly for it by working long hours and commuting two hours a day, but I thought it was worth it at the time.
As my longtime readers know, it all fell apart in 2014, and nothing has been the same since. Now, I have a perfectly decent life with my son and his family; they’ve been so good to us, even helping us make the vacation of a lifetime happen, and I’m glad we live with them rather than strangers. Still, I wish I could be content with what is instead of reminiscing about my halcyon days, which in all honesty weren’t really that idyllic—it’s just that the passage of time has blurred the hard edges of what was actually a very challenging existence.
I have to admit though, it’s my pre-2012 life that I really yearn for, despite the fact that it was no picnic either. That was before I became officially disabled, before I was even diagnosed with bipolar disorder. Ignorance was, indeed, bliss. I knew something wasn’t right, and I suffered terribly at times, but it didn’t rise to the level of needing professional help…at least not in MY opinion.
All of that changed at my very first visit to Dr. Awesomesauce, and the rest, as they say, is history. I can’t un-know what I know. I can’t take back my failures. Nor can I fix what’s permanently broken because of this insidious disease. All I can do is try to avoid triggers and not get bogged down in regrets over the past.
So maybe the best thing would be to sign my card and put it in my wallet where it belongs. After all, it’s something of a privilege to have Medicare at this time of life, seeing as how most people have to be 65 before they’re eligible (although it still feels weird qualifying for it because of my disabilities). It will come in handy this fall when I go back to my regular doctor instead of the one Medicaid picked for me (unless, of course, I like him better—I haven’t met him yet) because I’ll no longer be limited to doctors in this county. I can see any provider I want who accepts Medicare, including Dr. A if he stays with the clinic. That wouldn’t be a bad thing at all.
Well, if I ever wanted to be more involved in my treatment, I’ve got the opportunity now. My psych nurse practitioner, Sarah, is working on fine-tuning my program as I’ve become a little unsteady in recent weeks, undoubtedly because the Zyprexa’s been decreased. I’m not manic or depressed in particular; what I am is a little of both. It’s like trying to balance myself on a skateboard after standing on good solid concrete…and if you know anything about me, you know I’m not the most graceful person on earth.
But she’s given me the green light to experiment with splitting my doses of Geodon (which has been increased again) at different times of the day, and since I’m having trouble with sleep again, she also added a new medication called trazodone. It’s technically an antidepressant but is used more for sleep than anything else, and I get to play with that one as well because effective dosages vary widely. Many people take around 100-200 mg; I’m starting with 50. Slow and steady wins the race.
The goal of changing all this around is an admirable one: to get me down to the lowest amount of Zyprexa possible, or even (in a perfect world) come off it entirely. That way we can use it as the go-to drug if/when my choo-choo starts going off the rails. The problem with vitamin Z is that it tends to cause problems with cholesterol, encourages metabolic dysfunction, and contributes to diabetes. I already have all of the above, so getting off the stuff would be a great idea.
I just hope I can do it—without becoming unstable!—because even though Zyprexa has always been the single most effective medication for my bipolar, I have a lot of medical issues that might get better if I don’t have to be on it all the time. I’m still taking the 5 mg dose Sarah put me on at the previous visit and am supposed to take another 10 mg if I start ramping up, so we’re not doing this rashly. It’s still a little scary though…the 7.5 mg they put me on in the hospital has kept a lot of the depression away along with the mania. I’d do almost anything to not feel the way I did then ever again. If all else fails, Sarah will put me back on that same dose, but there are lots of combinations with the six meds I’m on now, and one could be the magic bullet.
The bad news is, I’m going to have to come off Klonopin. The state is looking closely at providers’ habits of prescribing controlled substances, and they are being strongly discouraged from giving benzodiazepines. This is going to be tough; I’ve been on benzos for 15 years and withdrawal is supposed to be a gold-plated bitch. I believe it; one time I forgot the vitamin K for three nights and had withdrawal symptoms on the fourth. I felt squeamish, squirmy, couldn’t get comfortable and it seemed as if every synapse was firing all at once. It was most unpleasant. I have a plan though, and I’m going to taper off s-l-o-w-l-y over a period of weeks to months in the hope of escaping most of the ill effects.
So many changes, so little time. Ought to be interesting. I’m self-aware enough now to spot trouble pretty early on, and I won’t hesitate to call Sarah if things go sideways. In the meantime, I kind of like being in the driver’s seat…I just hope I don’t wind up steering myself into a crash!
I read an article on Psych Central awhile back that’s been stuck in the back of my mind for some time. It contained a shocking statistic about marriages in which at least one partner has bipolar disorder: 90% of these unions end in divorce. Ninety percent! That means only one marriage out of ten survives the ravages of BP. And I can’t even imagine what the numbers are for those in which both partners have the illness.
I could have gone the rest of my life without knowing that. After all, I managed to blunder through 30+ years of marriage before I even knew I was BP. But it got me to thinking …how did Will and I make it? What gave us the edge over all the couples who split up over bipolar disorder?
Naturally, I have to give Will a huge amount of credit for sticking with me—literally—through thick and thin, good and bad, mania and depression. He’s held me close during the most challenging times of my life, which include the losses of a child and both my parents within a five-year time span. He’s endured my rages and rescued me from countless embarrassing situations when I was still a practicing drunk. He’s gone without new shoes so I could buy a pair for myself. That’s not to say that he doesn’t have a few quirks that drive ME up the wall, but overall he gives much more than he takes.
Still, we’ve always complemented one another; whatever I can’t handle, he can, and what he can’t handle, I can. I’m the one who deals with the taxes and other paperwork; he answers when the bill collectors call and will sit on the phone with the cable company for as long as it takes to resolve an issue. He did most of the cooking and cleaning when we had our own house; I was the main breadwinner. I filled out the kids’ endless school forms and advocated for them with their teachers and principals; he played with them and took them to the grocery store when I was too worn out from work to shop, let alone chaperone a rowdy bunch like the four of them.
So what happens when bipolar takes its toll on a marriage? I have several online friends who are divorced or are in the process of it, and the illness factors into every one of them. One woman’s husband moved out on her while she was in a psych unit; another left hers in the midst of a wild manic episode that started out with her flying across the country, to a city where she’d never been, and hooking up with a guy she met on the plane! (Thank God she had enough money to get back home when she came down.) Still another split with her spouse when he got arrested—again—following one of his manic rages; seems he mowed down his neighbor’s flowers and chased their cat, who apparently had crapped in his garden one too many times, with his riding lawnmower. Additionally, he has a long history of threatening people and getting into fistfights. He also refuses to take medication and denies he has a problem. I don’t blame her for leaving him. What else can you do?
It’s when I hear stories like these and read about the pitfalls of a relationship with someone who lives with bipolar disorder that I count myself very fortunate indeed that my marriage never became a statistic. We’re going on 36 years, and I don’t foresee anything happening that would land us in divorce court unless I go completely off the rails.
Now I’m curious to see if any of my readers are in the 10% of couples who stay together in spite (or maybe even because) of bipolar. If you are, would you mind sharing your success story?
As many of you know, I used to live a very different life. I was a successful nurse at the executive level, had the big house in the woods, socialized and juggled multiple balls in the air without much difficulty. As busy as it was, this lifestyle was highly rewarding in many ways, not the least of which was financial. And while I sometimes wished I had more time and energy for activities other than work, I loved my life, and I had no reason to believe it would not go on forever.
Then bipolar disorder hit me like a runaway freight train, and suddenly what had once been exciting became completely overwhelming. When I had my first “breakdown” I had NO idea what was happening, only that I’d dropped all the balls and couldn’t pick them up again. My once-sharp vision was fuzzy, my memory had turned to mush, and I was so anxious I thought I was losing my mind. I began to hide from people instead of enjoying their company as I used to. I lost the ability to persuade, and what’s more, I didn’t care. I became insular; I didn’t want to do anything or go anywhere or learn anything new. And life as I’d lived it for so many years ended…not with a bang, but a whimper. I lost it all—my career, my home, my joy.
I mourned that life for a long, long time. Perhaps I still do, although in a much smaller way. I have not been able to go back to work, and even with my disability income and Will’s Social Security, we’re barely making it money-wise. But I am at peace with what is, and I know my comparatively low-stress lifestyle has a lot to do with that. I’ve had time to work through the anger and the denial. I look back to where I was even two years ago and realize I’m different now. My problems—and priorities—are different too. That’s not necessarily a bad thing.
I’m not here to tell you that you can’t be the same person you were before mental illness struck. I’m only saying that, for me, that period of my life is over and I’m moving on. Living with severe bipolar disorder and anxiety, I cannot imagine ever again being able to move through a crowd and schmooze, or to be confronted by a patient’s angry family members, without panicking. There are days when I’m too agitated or too depressed to get out of my pajamas for no other reason than my brain chemistry gets screwed up. It’s safe to say that I will never be a working nurse again, and that’s OK with me.
I am a writer now. I write this blog, and sometimes I even write for a little money. I’ve found ways to use my talents and the wisdom gained from 20 years in health care. I love that. This may not be what I planned, and it wasn’t easy for me to accept it…but it’s what was meant for me at this point in my life, and continuing to fight it would only prolong the agony of the past few years.
I want to find my joy again. And with perseverance and a little luck, I will.
I come bearing good news on the mental health front: I haven’t noticed any major mood changes since switching up my meds. I don’t sleep quite as soundly as I used to, but I’m also not quite as much of a slug in the mornings anymore. I like not walking around for the first hour after awakening feeling like a bomb went off in my head.
That was something I never did get used to, even though I was on the higher Zyprexa dose for a year and a half following my hospitalization in November 2014. I’m glad to know I can get along on a smaller dose; I’ve tried reducing the Z in the past and had terrible luck with it, but I think the decrease has been offset by the extra Geodon I take in the mornings now. I’m self-aware enough to know if my mood shifts even a little in one direction or another, and I’m happy to say that I feel completely normal.
I have one more appointment with Dr. Awesomesauce in July, and I think he’ll be proud of me for giving this a shot under the supervision of my nurse practitioner, even though he tried several times to wean me down off the Z without success. I’ve been so scared to attempt it because I didn’t want to take the chance of destabilizing myself, but I forget sometimes that I’m in a vastly better place than I was a couple of years ago, in more ways than one.
Back then, I was newly unemployed and in the process of losing the lifestyle I’d worked so many years to build, and I was unstable as hell on top of it no matter how badly I wanted to believe otherwise. Once in a while I read some of the posts from that time and wonder how on earth I ever got through it (well, to be honest I barely did, and I had a LOT of help). Ye gawds, that was some tough sledding. In retrospect, it seems like small potatoes compared with what I’m facing with Will’s end-of-life issues, but at least now we’ve got a safe roof over our heads and close family to help support us through the hard times to come. Things could be worse…a lot worse.
And then sometimes I dream about going back to work. Not that I could, with all my physical and mental disabilities, and I have to remind myself that I’m only in the shape I’m in because I’m living a relatively low-stress life. I can’t even imagine going through this with Will if I were still in that State job, working 50+ hour weeks and sometimes having to be five hours away on overnight trips for up to a week for a survey. God must’ve had His hand in that for sure, even though I was bitterly disappointed at the time to find out that it was not meant for me.
But I was in another place, living with another mindset then…my priorities are much different now. I’m exactly where I’m supposed to be: at my husband’s side during this most important transition of his life. My nursing skills now serve only his needs, my patient advocacy is for him alone. There is no way that’s coincidental!
So I’m very glad the med changes are going well. I’ve completely rid myself of the notion of stopping them entirely (like I talked about a few weeks ago) and I’m in no hurry to reduce them any further. I am, however, willing to experiment under the watchful eye of my caregivers, and that’s a big step in the right direction. I’m under no illusion that I’ll ever come completely off anti-psychotics; that’s OK too. I’ve got a big ugly disease that needs hardcore meds to control.
I’m not going to worry about the future though, as hard as it may be. This isn’t the time for imaginings about potential catastrophes. It’s time to just be gentle with myself and take life, literally, one day at a time. And it’s looking pretty good so far.