That Time of Year

Tomorrow it will be 1,461 days since you had to leave, Phil. I know you didn’t want to. That’s why you told the doctors all that week to keep you alive, because maybe they could make you well enough to have a procedure that might give you a few more years. But there were too many “maybes” and “mights” and “perhaps”, weren’t there? Watching you make the decision to die is still the bravest things I’ve ever seen anyone do. If you were here you’d roll your eyes at me for that and scoff, “Brave? Ha! I don’t think so.” You were often humble but with attitude.

Phil…I’m sorry. I don’t think I said everything you should have heard. You knew how much I loved and love you, right? You knew how cool and funny and wonderful I thought you were, because that was never a secret. Did you know how happy you made me every time you walked into my house or the library? I hope so. I really, really hope so. But I don’t think you had any idea how much of a big empty crater you would leave in my life and every one of our family member’s lives.

I still don’t know who I am without you. I’m not the same person I was 4 years ago, but I don’t even remember who she was. I just….I still feel so lost some days, Phil. You know, the other day, Wally was reminiscing about something and it reminded me of Dad’s house and how he had his bedroom downstairs set up. But I couldn’t quite remember it all, and I’m going to ask our sister but I don’t think she was around much then. You and Dad are the only ones who might remember. I got so fucking sad and started bawling on the spot. So many questions will go unanswered because you’re not here to answer them. NO ONE is left to answer them. What the hell am I supposed to do with that?!?

I wish you were here. Jesus fucking christ all to hell I wish you were here. I still miss you every. single. day. I still wonder what you would think about a variety of books and songs and movies and television shows and food and drinks. I’ve been making a variety of these literary cocktails lately and my friend, Tiffany said she thought you’d like the whole idea of them. I think she’s right. “The Joy of Sex on the Beach”* would probably be a fave of yours just for the picture in the book. I mean, look at that! I can just hear your comments about the tongue, the phallic “cocktail” glass…yup. You’d love this one. 😉

*From the book, “Tequila Mockingbird: Cocktails with a Literary Twist’ by Tim Federle. Published in 2013 by Running Press Adult.

Tomorrow night, your sisters will toast you with a drink or two. Your nephew and I will go for a hike in a new place, will experience a new adventure in honor of you, like we have done each year since you’ve been gone. More than likely we will all have a good time at some point during the day, but we would trade those moments in a blink of an eye to be with you again and listen to you tell a naughty joke or hear you laugh once more.

I love you, big brother. So. Damn. Much. And if you didn’t get the subtle message before, I’ll spell it out for you. I. MISS. YOU. EVERY. DAMN. DAY.

Hugs and sloppy kisses. ❤

Boundaries

The scene at my house this evening, minutes after arriving home from work:

Husband: Hey, hon, do you still have some reusable grocery bags I can leave in my car?

Me: Oh! Yeah, I have some right here. I’ll go put them in your car right now so I don’t forget.

Husband: No, no, you don’t have to do that.

Me: It’s no problem. I have to put these cds in my car anyway. I’ll be right back.

I trot out to our driveway, put things in my car, open his car door to place the bags in his passenger seat. Then I find this on the floor:

I flipped the package over to look at the date. Was this left over from before his heart attack when he was eating loads of junk? “July 9, 2021.” Last Friday.

I slowly walk back into the house with this fried chicken bag pinched between my fingers. My breath is getting heavier with every step. Cue the cartoon steam exhaling from my ears. I walk through the door and put the bag in front of my husband’s face. With a clipped tone I ask, “What the hell. Is. This?”

Husband looks slightly shamefaced but not nearly enough. He’s smiling a little, but that nervous smile he gets when he knows he’s fucked up and got caught. I may have been afraid to yell at him a week ago, worried he’d have another heart attack. I certainly wasn’t scared today. I lit into him. When our son asked what Papa did, I showed him the bag with the fork still in it so he could eat in his car without anyone knowing. The boy just shook his head.

I raged for just a few minutes. Told him that it hadn’t even been 4 weeks since his nearly fatal heart attack. 27 days, in fact. “You couldn’t even go one fucking month without fried, fatty food?!?” I left the room to put my sneakers on so I could take a walk to cool down. But before I left, I stomped back into the living room, pointed my finger at my husband and said, “YOU are not allowed to kill yourself. I am the only one who gets the pleasure of killing you!”

Ok. Not my finest hour, but it felt good. And we both ended up laughing because it was so absurd and sounded exactly like me. Then I still had to leave the house because I was pissed.

But you know what REALLY upsets me about this? The night before he ate that fried chicken, he had a scary episode. He went to bed, but then came back to the living room just a minute later and said he couldn’t lie down. His stomach was bothering him, which was one of the signs he had before his heart attack. So he sat in his recliner, and I asked him if he’d like me to stay with him. He said that he would and took my hand. “Once I start snoring, you can go to bed if you want. I’ll be ok by then.” So I kissed him, turned out the lights, got blankets for us both, and lay on the couch listening to my husband breathe, cough, and sniffle. Eventually he slept deeply and I went to bed. It was a frightening time, yet he trusted and loved me enough to ask me to stay, which I know is a great gift.

And then…he ate the fucking chicken.

As a caregiver, one has to know when to draw the line or when to say, “Ok, big boy, you can make the phone call to your cardiologist to find out when they’re going to look at your other blocked arteries.” (This is something I’ve been asking him to do for a week, and today his nurse told him the exact same thing. Should we take a bet on how long it takes for him to do it now?) Since Wal’s heart attack, my sister and so many of my friends have been telling me to make sure I take care of myself, to take some time for myself. I mostly have. But no one has yet said, “It’s time to stop taking care of him.”

Because we don’t do that, right? We try to squeeze moments out for ourselves which often causes more stress in the long run, but we never say to someone, “Ok, you can give up on that person now.” And why? Because what if that person dies or has a stroke due to their declining health and is bedbound or mute or paralyzed. How would we feel then?

GUILTY.

But…shouldn’t there be a time when we finally say, “I will no longer take care of you. I will remain your partner until death, but I can no longer help you if you refuse to help yourself.” Any person we are taking care of must take some responsibility in their own health if they are able. When I took care of my mother, I understood that she could no longer do this. She could make her own coffee and get dressed, but showering and eating well and taking her medications were no longer in her realm of tasks she could do. And after a few months of working full time and taking care of my son and my mom, I knew that I couldn’t keep caring for her without losing much of myself.

So what do you do when you’re taking care of your spouse or partner? I have a friend who is dealing with this on an even more intense level. I have tried to lend my shoulder and ear to her as much as I can, but I know it’s never enough. She’s given me loads of advice and listens whenever I need her to, but her caregiving tasks are much more serious and frightening. And her spouse is NOT able to care for himself much anymore.

But my husband can. And he needs to. I find his lack of respect for his health infuriating but also incredibly sad and unfair to me. To our son. Does Wal know and understand all of this and everything I’m feeling and what I wish he felt? Yes. He does. And if he doesn’t, he will when I read him this blog post. 😉

The question remains: What do I do now? Do I throw my hands up and say, “Whatever. Do whatever you want”? Or do I say I will help you if you need me to, but I will not make phone calls for you or keep track of your sodium or fluid intake? My therapist and I just had conversations about what kinds of boundaries to set down, and the latter seemed the most appropriate at that time a week ago, but now? Now I’m angry and hurt and not sure what steps to take next.

I’m already tired of being angry. I’m not apathetic because I’m too emotional about this. I think I’m sad, frustrated, and disappointed.

Maybe I just need to find some patience and let him be and hope he finds the path towards good health. He doesn’t need to die trying to look for it because it’s right there in front of him. I’ve been holding out my hand to show him for a long time, but now I guess I just need to go on ahead and hope he catches up. I’ve left breadcrumbs and neon arrows to guide him, so let’s hope he just opens his eyes.

Anger Management

This past week has been filled with nearly every emotion that exists. Fear, surprise, sadness, guilt, frustration, grief, joy, and anger. These were all felt by everyone in my home and they continue to ping pong from one to another in each of us every day.

On Saturday, I spent the morning with my husband at the hospital. I crawled into his hospital bed, we held each other, and I cried for the first time since he had his heart attack. They were tears of relief but also fear of what the future will bring, and even grief for what he has lost. His life, our lives, have begun to change, and the changes can be difficult. But necessary.

The husband came home on Sunday afternoon. As we waited for someone to bring us a wheelchair, I scrounged the hospital floor, found a chair with no owner, and snagged it. I was done waiting and this guy needed to be home! It was kind of fun–like we were breaking out of prison. We laughed and waved to the nurses and enjoyed the moment. But on the way home, I could feel little bits of anger escaping. I snapped at him for telling me where to go then again when he said I didn’t pick up one of his meds when, in fact, I did. “You wouldn’t know because you were in the hospital!”

Oh.

Then I went to the pharmacy to pick up his new medications…10 of them. TEN. The pharmacist wanted to speak with me since these were all new. We had gone over all of them with the nurse so I basically knew what to expect and what he had to stop taking at home, but as the pharmacist started to tell me how Wal can no longer take ibuprofren for aches and pains and if he does need to take a nitroglycerin that the package is only good for 3 months after you open it and he (or I) would need to put it under his tongue…I started to cry. Could this be any more overwhelming? The pharmacist looked at me and said, “I know. It’s a lot. I had to do this with my father, too.” I just nodded but inside I was scoffing and yelling, “But it’s my husband, damn it!!” She went on to say I should probably keep a list of his meds and I said that yeah, I had done this with my mom so I was good.

I was so not good.

Once we got home, Wal went directly to a rocking chair we have in our library where our son has his computer. They sat together and we all talked. It was ok. We were ok. But as the evening went on, both my son and I were harboring feelings of anger, maybe resentment that Wal had put us through this again? I’m just speculating because I really don’t know what I’m feeling sometimes. I know that our son was being kind of a dick and I was flying off the handle at the most foolish things. And yet I was also trying so hard not to yell or upset my husband at all. But I could not be calm. I think I had kept my cool throughout this entire event (thanks to the support of my friends) but now that he was home, I could truly lose it…for a little bit.

But I felt so incredibly stressed and overwhelmed that night. What was he going to eat? What could I cook for meals? I put together a few snacks and salads for all of us, then realized he can’t eat leafy greens or broccoli because of his blood thinner. He can only have 8 cups of liquid a day, so let’s make a little chart for that. He’s diabetic so needs to eat as few carbs as possible.

Oh. My. God.

I spent the rest of that night cooking meals ahead for mostly my son and I and making snacks for my husband. I tried not to hover, but any kind of noise he made I asked him what was wrong. I didn’t sleep well that night because I was afraid he wouldn’t wake up again.

I needed to work all day on Monday, so after running my husband to the lab to have bloodwork done, I went to work but called home 4 times just to check on him. He is sad and scared and frustrated, too. Facing your own mortality must be some scary shit to deal with. He wasn’t awake or very aware of that fact last year, but this event is completely different. He felt himself dying this time.

Yet when I took Wal to our doctor on Tuesday, one week since his heart attack, I found myself getting angry again. He doesn’t think he needs to have a biPAP machine (he was not able to get one before he left the hospital). Since he’s slept well for a few nights, he thinks it’s ok. I did tell him that, in fact, he stopped breathing the night before, which why I had been awake since 4am. This has been a near daily occurrence for the past umpteen years, but since he nearly died the week before, I’m hyper aware of every little sound or movement his body makes…or doesn’t make. Once our doctor insisted that he seriously think about getting a biPAP did Wal concede that it might be a good idea.

*insert silent scream here*

Each day this week and part of next, I’ll take Wal to various appointments, work when I can, and will take our boy to have his wisdom teeth out. Most of our meals will be made by various friends, restaurants and an online premade meal service. It’s one thing we’re hoping to stop stressing about, at least for a few weeks. We’re all trying to find little things that bring us joy or peace. Our son had a friend over and they played video games and talked to other friends and just enjoyed themselves. My husband has been watching YouTube videos about camping…he has no desire to camp anymore but loves watching others do it, and playing Space Engineers where he gets to build his own space stations. That brings him a sense of accomplishment and happiness. I have been taking walks when I can while listening to fun podcasts and started running again after taking a few weeks off. Typically reading calms me and lets me escape, but I haven’t been able to concentrate on much. Today was the first day I’ve been able to get at least a few pages in and actually enjoyed it.

As we go about our day, none of us seem to be at the point where we forget Wally nearly died. Our groceries look different, the calendar is covered with appointments, and our phone rings more often with check ins and reminders of said appointments. And even the mail. Today’s mail was a lovely mixture of kindness–an encouraging card for both Wally and I from a dear friend–then a letter from the hospital with a different type of encouragement–to make an Advance Directive. That little piece of mail was such a kick in the ass. First because…holy shit. If anything can remind you of your mortality it’s someone telling you to get your shit together before you have another heart attack. And second, because the man already has one and they should have had it on file!! (I had to bring it to the hospital last year when he was in a coma.)

Thanks to all for your incredibly kind and uplifting words and thoughtful gifts. We have a long road ahead of us– physically, mentally and emotionally. I will need to work harder on trying to support my husband and to understand what he must be feeling. I am also aware that I need to take care of myself. I haven’t been great at it before, but I think I’m getting better. I am finding little moments that I take as mini vacations for my mind. Like these photos:

As I waited for my husband at an eye appointment today (yup, he can’t see well out of one of them due to diabetes), I found this little garden hidden behind the office. Pretty sure it was meant for the staff, but no one was there so I took the opportunity to sit in the sun, read a bit, take a few photos and just breathe.

That’s the key, right? Find those moments you like and suck every bit of life and love and joy from them.

So go hug, kiss, touch someone you care about, then find a few of those mini vacations for your mind.

We have to keep living one day (or moment) at a time. We just have to.

Talk to Someone

Five months after my brother died and just weeks after I moved my mother in with my family, I decided to talk to a counselor–the first time in over 12 years. But just trying to work out the logistics to get to that appointment stressed me out so much that I remember screaming in my car on the way there. I kept saying “I am never going to fucking do this again!” I only went to the counselor twice because she was absolutely horrible when it came to grief. At one point I was crying in her office, telling her how much I missed Phil, and what does she say? “He’s still with you, Holly.”

Really?!? Can I sit and talk to him and he talks back? Is he going to tell me a joke and give me advice on raising my son? Will he still be at my son’s high school graduation that he tried so fucking hard to live for? No, you goddamned bitch, HE’S. NOT. HERE.

Of course, me being the person I was (not sure I’m still that person), I just nodded and whispered, “I know.” Inside, though, I immediately deflated. (The anger came later.) I knew she would not be able to help me. On a side note, she was extremely helpful in helping with some issues with my mom and her jackass boyfriend. So the counselor was not useless at least.

Since those counseling sessions, I’ve only pondered finding someone else to talk to. After Dad’s death and especially after Mom’s, I thought, “Ok. You might want to talk with someone, Holly. This is a lot of shit to deal with.” I was so exhausted by fucking everything that I passed out momentarily in my kitchen after my mother’s celebration of life, with my poor son freaking out and calling his father who was out of state at the time. But I still didn’t ask for help. I barely even took time off of work. Then my husband nearly died, and once he came home I encouraged HIM to go to counseling. (When you’re in a coma for a while, there are many gaps in memory and events and it’s difficult for your brain to fill that time in.) Instead, I became HIS counselor and tried to help him sort out what happened to him and what was happening in my world at that time. But I didn’t go and talk to anyone then either. I started drinking most nights–just one drink–but I felt like I *needed* it, along with my anti-depressant. Hell, I often swallowed my pill with a swig of wine! (And no, this is not advisable.) Then, of course, the pandemic hit and didn’t everyone need a therapist at that point? I looked into Betterhelp.org, but they wanted to match me with a male counselor who, in my mind looked like either a serial killer or a child molester.

Yup. He looked like Kevin Spacey.

So, no. I decided to not go that route. Instead I read books like “Group: How One Therapist and a Circle of Strangers Saved My Life” by Christie Tate and listened to Mayim Bialik’s Breakdown, a podcast about mental health. And, of course, I kept running.

But we all know how that last thing turned out, right? Yeah. So then I started to worry about what I was eating and without running would I start binging or restricting food? I mentioned in my last post that I reached out to a dietician, but after thinking about it, I knew I needed more help than that. So I did a little search on counselors in the area that specialized in eating disorders. Then lo and behold, one of my dear friends from my past was a counselor for this very thing. When I saw her name, I immediately called and left a message. I knew she couldn’t be my counselor, but I trust her and knew she’d have someone in mind.

Then St. Patrick’s Day came–the anniversary of Dad’s death. And then I read a book that reminded me of my brother and I sobbed while eating lunch at work. Then I found one of my mother’s tote bags and it still smelled like her. And then…and then…and then…

You, readers, have been my sounding board for years now and although it certainly helps me to hear advice and anecdotes and to feel the love you’ve shared and showed me, I know I need to do something else, too. So when I talked to my friend, I asked her to help me find someone that could help me with MANY problems/issues/dilemmas, or in other words, life. I’ve only corresponded with this new counselor once, just so she has an idea of what I want to work on, but I won’t get to actually talk or meet with her until May. But, you know, once I had a name and heard her voice and read her email, it gave me this little high. Kind of like when you’re about to go on a first date and you have butterflies and possibly high expectations (I am trying to squash those) but more than anything, you’re filled with hope. This person you’re about to meet could possibly change your life for the better. And in this case, maybe help ME change MY life for the better.

We’ll see. Until then, I will carry on. Because that’s what I do. Because that’s what we all do, right? I can’t say I “keep calm and carry on” because my bursts of anger refute that phrase, but maybe you do? Whether you’re calm and serene, or pissy like me, let’s just keep going, ok?

LET’S. KEEP. GOING.

Have you lost it?

Nearly everyone I know has slowly been breaking apart for the past five months. We’re extremely lonely or depressed or scared or frustrated or all of the above. And we’re the lucky ones.

I’ve had several “breaking points” over the past 5 months, but this week I just seem to have broken off a few pieces of myself and have no idea where to look for them. The overall morale of my staff, my colleagues, my friends and my family is bleak at best. I’ve said before how helpless I feel because there seems to be so little I can do for them, but I’ve come to the point where I feel just as helpless and hopeless as they do. I have many good moments, and that’s what they are–moments. Seconds. Tiny tidbits of light and goodness and laughter. And honestly that’s what I try to show everyone. Those smiling pics on social media? I am typically really that happy in that moment. It’s the next minute you don’t want to see. Or the next hour. Might want to wait until the next day.

The past few days have been seesaw days, up and down, light and dark. But my frustration level with my work has been off the charts. I’m so sick of cleaning surfaces and quarantining items and for a few hours I thought some of that would be lessened. But of course there is so little consistency in the library world when it comes to procedures that my little light of hope was dashed and I might have had a mini meltdown in a Zoom meeting filled with Maine librarians. My exhaustion and frustration bubbled over. Me being the “good girl” I am, I apologized and I really didn’t want to offend anyone, but for fuck’s sake! Can we get on the same goddamned page for just once?!? (no pun intended)

*sigh* There. Thanks. I needed that.

And, of course, the school plans are out. The school my son attends will have hybrid learning like many schools in Maine, which includes going to school for 2 half days and remote learning the rest of the week. Just a remote option is not currently available, but I did let them know I’d like that if it ever becomes an option.

Have I been judged by some parents for not homeschooling (or wanting to homeschool) my child? Yup. Am I mad as hell about it? Yup.

If you have the money or opportunity to homeschool your child, kudos for you. I’m happy for you. Really. If others are choosing to send their child to school OR if others have to send their child to school because they work outside the home and their child has already been home THE ENTIRE SUMMER without any contact with other kids except the occasional Discord or video game chat, then let them be, Judge Judy. As my lovely friend said to me this morning, “They can go fuck themselves.”

If you think any decision is simple or easy when it comes to my kid, you’re damn wrong. Don’t you think I’ve thought about all the consequences for both my son and my husband? What about the fact that I work in a public building and see 50 people every day? Don’t you think I’ve thought about THAT?

*insert deep breath here*

The thing is…I’m tired. I’m tired of being afraid, I’m tired of feeling like my head will explode from all the information and plans that change from week to week, I’m tired of wanting to feel numb so I can’t feel all of my feelings.

I know I’m preaching to the choir. I know many of you feel and think all of the same things I do. So what do we do about it? Hell if I know. I’ve done all the shit people tell you to do–exercise, eat well, laugh, talk with friends, etc. I also take an anti-depressant, rage at the universe, and occasionally drink until my brain quiets down.

Since we’re all in this together (which, by the way, I am so damn sick of that phrase), what do YOU do to not go completely insane or sad? Or if you’re already at that point, do you have any thoughts of how to climb out of that hole you’re in? Do you need a hand? I have really long arms, orangutan-length in fact, so just let me know.

I’ll leave you with a photo of the sky near my house tonight. There were dragonflies in the air, too, but you can’t see them so just imagine the magic.

Serenity Now

Ever feel like “Red”, the angry bird that has a short fuse and explodes a lot? Or how pissed off Michael and Janet Jackson seemed in their Scream video? “With such confusion don’t it make you wanna scream…Stop pressurin’ me, stop pressurin’ me.” As a library director in the middle of this pandemic, this is exactly how I feel. I’m angry, confused, and just trying to do the right thing while voices from every side and direction continue to yell at you about one thing or another.

And I do mean yell. We have a library listserv in my state and lately it’s been downright awful. Mean people suck. And there not only mean people out there but rude and judgmental ones, too. (And I mean JUDGY!) Lately some of the comments on the listserv reminds me of why there remains the stereotype of a shushing bitch that we have tried so hard to demolish. And not just on the listserv but even among Zoom meetings or on social media. The library world is a small one, and the Maine library world is even smaller, so when you talk smack on one publicly, many of us listen and sometimes smack back.

There are also many Maine librarians that have been super heroes and awesome to the nth degree during this pandemic. Because that’s who many of them are and I try to ignore the others…or talk about them behind their back because you know we’re all doing that. But then I find myself lashing out at some colleagues at the end of this week. Some deserved it, others didn’t. I apologized to those that I knew I should, because that’s what I do and it is certainly not done enough, especially among co-workers and colleagues.

So to try and deal with all of this anger and confusion and grief, I attempted to do a few things this week to help me cope. Unbelievably, I did NOT eat my feelings this week. That was new! I attended a talk via Zoom on mental health co-sponsored by my son’s school, I talked to friends about all of it and I ran.

I’ve tried to begin running in earnest once again, starting 6 weeks ago with a running app called “Running to Lose Weight”. First off, I didn’t lose an ounce. I actually gained back weight, but I loved the routine so much that it didn’t matter. Instead the app eased me back into running with walking breaks until I was finally running my typical 3 miles again by the end of the six weeks.

Today I even hit a PR, at least a personal record in the past few years. I never, ever try and go for fast because I’m not. I would love to increase my distance back to my 10-mile Sundays that my brother used to be in awe and proud of. But that won’t happen for some time or maybe even ever again. But I’ll try. And maybe, just maybe, I can find some kind of peace while I’m out there or at least when I’m back home. I need to find a way to channel that anger, and not just just anger but all of these intense emotions that I seem to lose control over these days.

My “I kicked ass” face.

I know it’s ok to have all of those feelings–anger, sadness, frustration, confusion, and even intense joy. (Don’t let people take your happy moments away from you either, because they’ll try!) But I’d also like to be able to take a deep breath and find that moment of clarity and tranquility and carry on with whatever discussion I’m having with people and not lash out.

Hopefully I’ll find that bit of serenity when I need it. Until then, hang on because it’s going to be a bumpy ride.

This Sucks

For just a moment, I want to take a break from COVID-19 and tell you what my life has been like since my last blog post. If we’re friends on Facebook, more than likely you know much of this story.

On Groundhog Day, I took my husband to the ER where he was diagnosed with pneumonia and Influenza A. By the next night, Monday night, he could no longer breathe on his own. He didn’t want to have a breathing tube put in and put on a ventilator (he’s severely claustrophobic) but his only other choice was to die. I sat with him, holding his hand, and he said to me, “It’s so hard to breathe. I can’t do this much longer.” As scared as he was, I was afraid he would choose to die. But at only 52, and having me and our 12-year-old boy, there was too much life to live still. So he chose to live.

The next 2 weeks were hell. Once they intubated my husband, they nearly lost him several times that night. As the doctor said, “We gave him all our ‘Hail Marys’ at the beginning.” That was the only way to keep him alive. I spent much of that Wednesday in the hospital, holding his hand and crying. He was in a medically induced coma at this time. My son and I went to get tested that day and surprise! I had the flu, too. (My son got it the next week.) I was no longer allowed to visit my husband in the ICU until the following Tuesday. I was so angry at the universe and I sobbed and I just couldn’t believe all of this was happening.

Then each day his numbers got a little better. By that Saturday, they thought they might be able to take the tubes out and get him breathing on his own. But they couldn’t wake him up. They ended up doing a cat scan of his brain because he was just flailing and eyes rolling and he couldn’t respond in any way at all. Fortunately his brain was fine, he just couldn’t wake up.

The first day I was allowed to visit him, I stayed the entire day and played music to him and read and talked with him, held his hand, massaged his legs. I kissed him and got mad at him and loved him. It was a really long day. The next morning our son woke up crying. He just wanted to sleep and not go to school and not deal with this fucking nightmare anymore. And I completely understood, but explained we both had a job to do that day. He go to school, I go to work, Papa gets better. And you know what? That day my husband did wake up. Only for a moment, but enough to answer the nurse’s questions. (I called my boy’s school and the principal told him in person that his father had finally woken up. I truly love his school.)

Friday, Valentine’s Day, my husband’s breathing tube was removed and he was able to speak for the first time in 11 days. We had never gone more than two days without speaking to each other in nearly 25 years, so this was a pretty special day.

The next week and a half in the hospital was tough–he was really loopy for a few days and didn’t make much sense. But as he slowly started to get better, it was just difficult to see him so fragile and weak. He lost 40 pounds in four weeks, so his body was just ravaged. But then on February 24th, he finally came home. Those first 2 weeks home were a bit rough, too. He needed more help getting around than I realized and seeing my husband use a walker was really hard for all of us to see.

But now, three weeks later, he can walk for at least 3 minutes at a time with no assistance, can walk a flight of stairs, showers and dresses by himself–these are all huge accomplishments compared to last month. So he’s finally coming back to us.

And then COVID-19 happened. I know we’re all dealing with it–people are sick or dying, schools closed, some folks working from home, our area still in flux. My library is still open but that could change this week. My husband had planned to go to the store this week with our brother-in-law but I have told him he will no longer be allowed out except to the doctor’s office. He laughed out loud but then looked at my face. “Ok. I get it.” His immune system has been compromised and after the nightmare we just went through, I’m not losing the big lug now.

Oh, and did I tell you I have pancreatitis? I’m on Day 9 with no real food–water, jello, chicken broth and bullion and the occasional sip of Gatorade. I just need to keep out of the hospital because my husband still can’t drive and I need to be here. But my numbers are slowly getting better (my doctor is aware and I’m having blood drawn every few days to track this). The pound a day weight loss is nice but I am really freakin’ hungry. But if I can’t yet eat by Friday, the 2-week mark, then I may just have to go to the hospital. Here’s hoping I can beat this on my own!

So now for just a minute, I want to talk about COVID-19 and the effect it’s having on myself and my family. Besides being scared and desperately wanting to escape this dystopian novel, are you angry? I have been so, so angry at the whole situation. Not any person in particular–yes there were plenty of fuck-ups along the way but I’m not mad at a person. I am just feeling so battered and bruised and oh jesus what will happen next?!? We already cancelled our cruise with the help of doctor’s notes and a load of paperwork (I am so thankful for travel insurance and will never go without it again) and who the heck knows about our trip to Florida in April–yet I’m ok with that. If we can’t go, we’ll try again later.

I just want there to be a later. Right?

My family out to see Jim Gaffigan a few years ago.

That picture? That event? To be able to go to a large stadium or arena and listen to music or a comedian or see a play—that is what I want again. I am sure that someday we’ll be there, but I’m also sure our lives have changed forever. I know that after my husband’s hospitalization, my family’s life has changed forever. We have really enjoyed our time together since hubby has been home. He can still drive me crazy, but we no longer take each other for granted. And maybe this virus will do something similar. Maybe we’ll appreciate what we have a little bit more.

Or maybe we’ll go back to our old ways and be jerks to each other.

But I hope not. I hope we can get through this together–but 6 feet apart.

Stay healthy, y’all.

To Smile or Not to Smile

Tonight, at a library function, I met someone that knew my brother. After we were introduced, she tilted her head slightly and with a big-ass smile on her face she said, “Your brother passed away last year, right?” She was still smiling. WHY THE FUCK WAS SHE SMILING?!?  I wanted to rip her throat out. If I had the strength, I would have taken my bare hands and ripped her mouth from her face. But I think I was too shocked to completely register my anger.  Why…what…why was she smiling? Really. Please tell me. Instead of scarring her for life, I quietly answered, without a smile on my face, “Yes. Yes he did.” She proceeded to tell me how she knew him and talked about the little dog that lived in my brother’s house but I could still only think about murdering her.

gold-mask-smiling

Has enough time passed that I’m supposed to be ok with someone asking about my brother’s death with a goddamned smile on their face?!? Am I EVER supposed to be ok with this? Because I can assure you that I am not nor ever will be ok with a fucking smile on your face when you ask about my brother or his death.  Losing him was the worst thing to ever happen to me and it has changed who I am. I miss him every damned day. I no longer have that person in my life who will recommend books, movies, and music to me and knows what I’ll like or hate, and will recommend shit I hate anyway. He’d do it just to push my limits but in a way that ended up opening my world just a little bit more. He was that person that made me laugh about things that you probably shouldn’t, but you know you can because it’s ok with him. He was the fucking life and laughter of our family and now he’s gone.

Forever.

So if someone asks you, “Do you smile when you ask about the large black hole in someone’s chest or that limb that they’re missing?”

The correct answer is NO.

Lessons to Learn

I’ve contemplated writing this post for over a month. I didn’t want to write it because it was no one’s business but mine and my family’s, but isn’t everything I write? Then I didn’t want to write it because the rage I felt prevented me from coming up with any words at all. Just today I decided that yes, I would indeed write about this latest shit storm, if only to help someone else down the road.

Let me begin with saying that if you have Power of Attorney for a family member, even for a person with dementia, that power only goes so far. We live in a country where everyone has rights. This is a good thing. It is. But is that person with dementia able to make good decisions, particularly about their health? Maybe, maybe not. Is a 7 year-old able to make good decisions, particularly about their health? We’re dealing with something very similar here. Just because a person wants to do something and is able to verbalize their want, does not mean that they should be allowed to do said want. Do we let 7-year-olds drive because they want to? Nope. Do we let people with dementia go back to their home with no one capable enough to give them medicine or feed them or remind them to bathe or clean up after them? Apparently yes.

My mother’s “friend”, let’s call him Jack, as in Ass, goes to the residential care facility where my mother is living, and packs up her things. He is going to take her back to her home where she’s happiest. Because my mother has rights, resident rights, she can tell the facility that she’s leaving. I can do absolutely nothing. I try to call her and tell her not to do this. No answer. I call Jack and tell him to stop. He doesn’t answer. I call my sister and we rage but we are helpless. Then I leave nasty voicemail messages on Jack’s phone, ripping him a new one. I have no idea what I said. I just know I was furious and frustrated and couldn’t believe this was happening.

I talked to my mother over the next few days. She, of course, was happy as a pig in shit. And you know, it was nice having her happy, but I also knew she wasn’t safe. During one of these conversations, I could hear Jack in the background, mumbling and freaking about something, but didn’t know what at the time. Apparently Mom’s blood sugar was so high that he was trying to make her a doctor’s appointment. He eventually took her to the ER where they gave her insulin.

I sent Jack a text telling him to take my mother back to the facility or he would need to start taking care of my mother. I sent him a list of things that needed to be done, things I discovered she needed when I tried to care for her in my home. “I’m not a caregiver,” he replied. “I just want to hold my friend’s hand as we go through hell.”

Oh, for fuck’s sake, GROW UP! You better do more than hold her hand, you asshole!

Two days later, Jack calls me sobbing. He “overestimated” himself, he said. He couldn’t take care of my mother. He said more, but honestly I have no idea what he said. He was blubbering. He was hysterical. But, as I discovered when I went to Mom’s house, she was NOT going back to the facility. She refused. She wasn’t going anywhere.

And that’s where we still are.

So what does all of this mean? It means, that in order for my mother to be safe and in a place that I know will give her meds and feed her nutritious meals and be there to help her bathe and remind her to change clothes and provide things for her to do besides stare at the television, I must become her guardian. I must fill out applications for other facilities and make phone calls to Adult Protection Services (again) and make appointments to visit facilities and do more paperwork for financial assistance. I must go to court and officially become her parent.

And you know what?

I really don’t want to.

I’ve been dragging my feet with the court piece. I have essentially been my mother’s parent for a few years now–paying her bills, taking her to appointments, and while she lived with us, making sure she ate and giving her meds and cleaning up after her. But once she moved to the residential care facility, I didn’t have to do any of that. I knew she was safe. I knew she was being taken care of. Whenever I visited or called, she was doing well. She really liked a few residents, she occasionally partook in activities, she was ok. I knew she wanted to be home with her cat. I completely understood. But things weren’t good at her home. Things ARE NOT good at her home. So for two months, I didn’t have to be my mother’s parent. I got to be my son’s parent instead. And now that the tide has turned once again, I’m not ready for it. Well…no. It’s not that I’m not ready. I just don’t want it.

I’m angry. I did what I was supposed to do. I tried to help my mom by taking care of her, then when that wasn’t working, I found people to take care of her better than I could. Then this Jack goes and does what I suppose he thought was the right thing, but all it’s done is hurt everyone involved. I have never in my life, felt such rage. I had never fantasized about killing someone before, but Jack changed all of that.

I’m frustrated. The amount of paperwork I have to fill out seems to have doubled. I peck away at it occasionally, but I know the end result of all of this is not going to be enjoyable. Once I become my mother’s guardian, if she still refuses to leave her home, she’ll have to be physically removed. I don’t know what that will entail and I really, REALLY hope I don’t have to find out.  And through all of this, I really, really just want to talk to my mom. I’m trying to do what’s best for her. Is this it? I have no idea. It’s either safe or happy. It apparently cannot be both. At least not for her.

This is the reality of taking care of a parent. It’s fucking awful. Now, not everyone will have this kind of horrible story. Some will have parents who have already planned everything beforehand. Some will have parents that willing go to facilities (which my mother did, then changed her mind). And some of you, like me, may have a parent who has hooked up with an incredible loser that will destroy any good thing you’ve done for your parent.

If that latter example is you, then just know that you’re not alone. Know that others have traveled or are traveling the journey and although it’s worse than riding a crowded Greyhound bus cross-county with a backed up toilet, there is help. Not a lot of help, and the process is extremely slow, but eventually things will change. I can’t say for the better because I’m not on the other side yet. I’m hoping for better, especially for my mom. And if we get there, I’ll be sure to let you know.

alzsucks

 

The Big Scary World

briaroceanI’ve always loved this photo of my son. He wasn’t quite 4 years old when it was taken. It always scares me a bit to look at it, thinking of my boy going out in the big wide world, having to face some challenges alone but also having to handle problems I never even imagined.

This past year my boy has had to deal with more than his fair share of sadness, despair and hard times. It’s one thing to think that I will never be the same after my brother’s death, but I’m 44 years old. To realize that my 10-year-old will never be the same is an entirely different story. He certainly has sad days but he also has more anger than ever before. Just this week, the topic came up about saying goodbye to someone before they died and my son started to cry and spit out, “Just like I never got to SEE someone and say goodbye!” I started to sob right along with him but held him tight against me. I told him how sorry I was, but I also told him that his uncle would never, ever forgive me if I had let my son see his uncle in the hospital hooked up to all of those machines. Phil didn’t want any of us to see him that way.

As a parent, I often wonder what my child can handle and what he can’t. I want to believe him when he says certain things don’t bother him or that he really can do this or that. He told me that sometimes when my mother lived with us, it was ok.  And sometimes it was, but the relief that kid showed when his grandmother moved out was unmistakable. And I don’t have any doubt that seeing my brother the way he was on that last day would have been horribly traumatic for my son, because it certainly was for me.

For whatever reason, I thought a lot about that day today.  I couldn’t tell you what triggered the memory, but there it was. I was actually in the dentist’s chair when it trickled through my mind and I had to hold back a sob while keeping my mouth open so the hygienist could clean my teeth. Really not the best place to have a mini breakdown.

Will my son always wonder and possibly regret not having those last few moments with his uncle? I tried to remind him this week of his last conversation with Phil. It was the same day I had my last back and forth conversation with him. He was in the hospital and my son was in Florida visiting his grandparents. I brought my laptop into the hospital and my brother and son talked via Skype. They chatted about the weather and my son showed his uncle some YouTube video about a video game and they joked around for a bit and they told each other that they loved each other. They said what mattered.

I know I don’t have this parenting thing pinned down yet because I’m still making mistakes every damn day and I’m not sure I’ll ever know what good or harm I’ve done to this poor kid. I’m just trying to listen to him and love him and do what I think is best for him. I think I’m doing and saying what matters.

That’s all I can really do, isn’t it?