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.

Stress is a Killer

Let me begin by thanking all of you readers and your thoughtful comments and suggestions when it came to my mom and her care. As of 5 days ago, she is finally in a safe place. Unfortunately, it was after an incident where “Jack” had to be asked, by the police, to leave Mom’s house.  This was followed by two weeks of me stopping by every other day, checking on Mom, giving her meds, watching to make sure she ate, and horrible conversations with her about moving somewhere where she could be safe and taken care of.  You can imagine how those went, right? Not good.

After talking with Mom’s nurse and social worker, and having them tell me that it was really ok to lie to Mom and tell her she had an appointment when, in fact, she was moving, I ended up doing just that. The facility Mom has moved to also knew what was happening and they’ve had to do this type of thing before. The move is for the safety of the person. My emotional health was irrelevant but Mom’s safety was the most important thing I had to keep focusing on. And I did.

Once we were inside the facility and the director told Mom she was staying there for a while, Mom first got angry and headed for the door. Eventually she followed us to her room, sat on a bed, put her head in her hands and sobbed.

It was absolutely fucking awful.

In many ways this was worse than in January, when Mom moved to a different facility. Maybe because I was by myself this time? But in other ways I knew in my heart and soul that this was the best we could do. She would be safe from herself and at least one other. She would be eating 3 meals and 2 snacks a day. She would have other people around to talk with and to. And she’s only 25 minutes from where I live and much closer to other members of the family.

After driving back to her home that day and getting many of her things, then visiting a bit with her after placing family photos around her room, I left her in a good space. She was listening to music with other residents and was enjoying herself.  Then on the ride home, I had a sudden pain in my pancreas.

I’ve had pancreatitis twice now and I know what it feels like. I wondered if last year’s bout was stress-induced, and now, I really think it was and is. I didn’t think I internalized my stress. I talk about it, commiserate with those in similar situations, and attempt to exercise most days to relieve my stress. Obviously I’m doing something awful to my body and I have no idea how to handle my stress. So, to avoid going into the hospital, I’ve drastically reduced my food intake. I’ve lost 4 pounds in 4 days. As much as I’d like to lose a little weight, this isn’t the way I wanted to do it.  But it’s worked so far in keeping me out of the hospital. (I really think this might be some bad karma coming into play. I’ve tried to keep my weight down for my entire adulthood, obsessed over it for too many days to count, and now, here I am, losing weight and not really wanting to. It’s like the Gypsy from Stephen King’s Thinner is after me!) Not sure I can keep up with it for many more days, so I’m slowly increasing my food and testing how I feel. This doesn’t mean I’ll stay out of the hospital, but I have hope. I’m also running a mile a day thanks to Runner’s World “Summer Run Streak” challenge and my friend, Sonya. It might not be the wisest thing to do on such little food, but it gets me outside and out of my head for those few minutes. (Make that 12 minutes since I am definitely running slowly.) I’ve also attempted meditating (that helps get me to sleep) and have tried to take LOTS of deep breaths.

 

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Stressed much?

One of the most difficult things about Mom being where she is are the phone calls. Yesterday Mom had such a great day and told me she was “happy” to be there. That was pretty amazing and something I never heard when she was at the other place. And yet at 8:30 this morning I got a phone call from Mom, asking me to pick her up. I told her she needed to stay there. When she asked why, I told her because of her dementia. She then denied she had it. I should have known better. I never should have brought that up and just said she needed to stay for her health for a few days. Today I learned that this is called a “fiblet”. It is a “necessary white lie to redirect loved ones or discourage them from detrimental behavior.” The term “geriatric fiblet” was created at the 2000 World Alzheimer’s Conference. Who knew?

I went back to see Mom this afternoon since she asked me to visit during that awful phone call. I said I would. My husband told me I didn’t need to go. We had already had an eventful day, going to Mom’s house and taking care of a few things there, as well as dealing with the stress of having to meet “Jack” and hand over the cat. But since Mom is only 25 minutes away, I decided that I needed to do it for me. So I did and it was a brief but lovely visit. So tonight I can sleep well (barring no pancreas pain) and not worry.

That is the hope anyway.

 

The Good, The Bad and the Exhausted

It’s been a rough few months for my family. My mother’s health and mind are declining faster than I’m able to cope with. My father’s memory is fading, too. My brother was in the hospital for a month and I ended up in the hospital for four days for pancreatitis. We were all feeling helpless and at times, hopeless.

But within those two months of ickiness, there was Mother’s Day, my dad’s birthday, and my birthday. My son finished fourth grade, his baseball season ended (hopefully his last season ever) and he grew another half inch.  I lost 5 pounds (although I don’t recommend pancreatitis as a way to lose weight). My husband, son and I all read a bunch of great books during this time, had several amazing sushi dinners at our favorite restaurantsocks, Ichiban, and we finally saw the movie, Wonder Woman.

When the shit started to hit the fan in May, I was finally running more after this long winter. I was up to 8 mile runs on Sundays. It was a great stress reliever, but it was also nice to have mileage goals in mind again. I had hoped to be at 12 miles by now, but my body had other plans for me. So this morning, after my first full cup of coffee in a month, I put on my favorite socks and went for my first run in three weeks.

I’m not gonna lie. It was really difficult. The first half wasn’t bad, but I started to lose energy just after mile one. Had to take walking breaks on the way back and finished the 5K with nothing left in me. Just thinking about the power of my sock capes flying behind me was the only thing that pushed me through that last quarter mile. The heat and humidity were a factor, too, I’m sure.  I nearly passed out twice after I got home (saw spots, light headed) and my energy didn’t really return until the evening.

I don’t know about you, but I’m not very good at treating myself well. But I really need to. I need to learn to be good to myself. I need to learn to let things go, to not stress over situations that I cannot control right now, or possibly ever. I need to listen to my body. I need to admit that it’s ok I don’t run as much as I want to and it’s ok I can’t eat whatever I want right now. It’s sucky, but it’s really ok.

Now that summer has finally arrived here in Maine, I’m trying to have a more positive outlook on at least the next few months. If I can’t run as much, I’m hoping to take more walks in the sunshine and try a little more weight lifting. If I can’t eat ice cream every day (which is a crime), I’ll try to find yummy but healthier options. I’ll try to spend more time with all of my family, bring out photos to remind all of us of good times in the past and continue to plan good times for our future.

I will try to live in the moment. I will try to not wish away the weeks, wanting the painful bits to hurry up then go away. I know the pain will pass and I can get to the other side eventually. I just need to live through it, learn through it and move on. As my dad always says, “You can’t live more than one day at a time, right?”

Right.

So here’s to you and me, living in the moment during this summer of hope. Let the good times roll!