Still the Best View

Can we start with...this has been a wild 24 hours. And not in a good way. I'm emotionally spent. My Mom was so down last night. I keep asking myself, am I in denial? Are things way worse, than what I am seeing?

But first, let's start with the good stuff. We had the most amazing ER nurse! Sometime around 2AM, he came into my Mom's room with a recliner. Sheets, blankets, and pillows. And for the first time ever, I had some decent sleep in the ER. 

To be honest, he was just a dream. Worked with the pharmacy to get meds. Let us sleep. And when the phlebotomist couldn't draw blood, he did it. So kind and gentle. I really appreciate good nurses. Martin was top tier.

This morning we woke up to this beautiful view. I mean, it never gets old. The best part of this hospital, is the view. The spectacular view. We've watched the hot air balloons go up for over an hour now. Some are starting to land. But it's a gorgeous sight! And the best way to start our morning. 

Yesterday was just rough. We hadn't seen a single doctor all day. Around 4:45PM a Hospitalist finally showed up. She seemed a bit annoyed. Is it me, or all Hospitalist like this? And honestly she seemed ready to go home. Like my Mom was an inconvenience for her. Then the tuff talk began...

Telling my Mom she needed to update her Code Status. That this is the end. And there is really no reason for CPR and/or machines. I mean, it basically sent my Mom in a downward spiral. She was so upset! Understandably so. And my Mom wouldn't back down.

Eventually, the lady left. And I struggled to get my Mom's spirits back up. But it's had me wondering. Is it really the end? Is she so much worse than we think? Is there no hope? I would think we would be having this sort of conversation with Oncology. Like if they feel like things are this bad, wouldn't one of them come to talk to us? Why put her through another bone marrow biopsy? 

End of life care and talk, should be a gentle topic. It should be something, you do with lots of grace. Have some care and compassion. This lady, basically walked in the room, pulled up my Mom's chart, and started the entire...you should just die speech. I 100% mean, she hadn't seen my Mom's chart until that minute. And immediately went into this conversation. 

I was basically speechless. I know we are definitely here until Tuesday. My Mom has a bedside BMB scheduled. I'm tempted to call Oncology, just to have a little chat. I NEED to know what's going on. What I should be preparing for. Like what the heck is going on?

By last night, my Mom was spent and went to bed. I just sat here wondering if I'm in denial. Is it worse than I think? I mean I lived through everything with my Dad. Am I missing a piece here? Just left with a lot of questions. That I hope to have answered. Between, my Mom seems to be doing much better. Had a much better night last night. 💜

We're Back

Pretty sure, I saw this coming since Tuesday night. But we're back. My Mom basically slept all day yesterday. I got her up, long enough to take her medications. And to eat a few bites of a breakfast burrito. I've been worried. To say the least.

Earlier she had a coughing fit, and couldn't catch her breath. Then she asked me to bring her to the ER. I called the Oncology nurse. Who promptly told me to get her to the ER. She'd be waiting to hear from me. Or she'd call 911 to meet us somewhere. Off we went.

Today I got to wait inside with my Mom. The ER was much busier. So we waited a bit longer. But still safely in the Oncology Corner. Honestly, I think my Mom's appearance is what allowed me to wait with her today. Again, they started off with X-rays. Around 5:30PM, I left to call my Auntie. To let her know what was happening. Then the new staff wouldn't let me back into the ER.

All was good. I took a walk. Updated family. Snapped a few pictures. And ultimately found a chair to sit on and read my book. But OMG it was HOT out there! I happened to get a chair right outside the employees door. So I was grateful every time it opened and blasted me with cold air. At shift change, that was quite nice.

At 6:30PM, I looked into the Waiting Room and didn't see my Mom. So I called the ER and found out she had gotten a room. An ER doctor came almost immediately and let us know, they'd be admitting my Mom. Because it was obvious she was having trouble breathing. The doctor could also hear crackling in her right lung. 

They started fluids, some meds, and electrolytes. It's looking like a new strain of the flu and the earliest signs of pneumonia. My Mom has had it before. So it was kind of likely to happen again. Even with her vaccine.

And because business is booming...we'll be spending the night in the ER. With Nemo starring at me. And a bed made out of 2 chairs. More than likely oncology won't have a room until tomorrow around lunchtime. But as long as my Mom is getting the care she needs, I don't care. 

I snuck off to grab some food around 9:30PM. Learned my lesson on Tuesday. But I missed the next doctor. The hospitalist. The nurse filled me in. By the way, he's awesome! We've never had such a great nurse before.

I had dinner. My Mom had half a milkshake and a little bit of a fish sandwich. But hey. That's more than she's eaten in 48 hours. So we'll call it a win. I also managed to bring a sweatshirt today. My tablet, a book, a crochet project, chargers, and my vitamins. I'm calling it a win. Because the last few days feel like a blur. Off to catch a little sleep. Hopefully. With Nemo and Dory watching over us. 💜

 

Blood Draw to ER

Today started off normally. My Mom needed to go for a normal oncology blood draw. To see if she'd start chemo tomorrow. It had already been delayed because of her counts. The nurse asked me to take her early in the day. Because her doctor isn't in the office. So they'd like the results earlier in the day. But something wasn't right...

Usually I just grab my small purse. Or even, just my driver's license. And we run to the Main Hospital. All of 5 minutes from our home. 10 if there's traffic. But something didn't seem right. So I grabbed my phone, charger, and a book. 

My Mom had not been feeling well since Sunday night. We 100% thought it was her tooth. But this morning she just wasn't feeling great. And was acting out of sorts. Once in the lab, I knew something was wrong. And I called the oncology office. The nurse asked me to take her into the ER. 

Not the ER in the hospital we were at. But the hospital that has the Cancer Center. So off we went. Across town. And we got there in about 20 minutes. The nurse called me almost as soon as we pulled into the parking lot. To make sure we had gotten there safely. Because she was waiting to call 911 if I needed help. If I haven't said it enough...I'm so grateful for this team!

And because of protocol...I stayed in the car after I helped my Mom check in. A little tip here...call the office first. They call ahead to the ER and you jump the line a bit. I think I might have sat in the car about 90 minutes before they had settled my Mom in an ER room. Which was amazing. I heard other people saying that they had been waiting for 4+ hours. I spent my time watching a show.

During that time, they did every test known to man. My Mom had scans. Went for multiple X-rays. Got fluids. And nothing. Not really anything out of place. My Mom is doing better. Because earlier she couldn't walk. And was super confused. But I'm just speechless. How is nothing wrong?

My Mom's oncologist happens to be working at the hospital this week. So the ER doctor called him to consult. And because they really can't find anything wrong, they're sending her home. Which I agree with. But honestly...it's so weird that they can't find anything wrong. Don't you think?

The ER doctor prescribed an antibiotic. In case it's her tooth. They gave her one dose here. And sent the prescription to the pharmacy about 90 minutes ago. My Mom has a dentist appointment on Friday. We'll still have to consult with oncology if they need to do anything major. 

So we'll be heading home in a bit. And I hope my Mom starts to feel better. She hasn't been eating. And has just not been herself since Sunday morning. That's what alarms me. But at least they've run all the tests. And it's nothing major. 

On a side note, I haven't eaten all day. Didn't take my vitamins. Almost froze to death. Because I was not prepared to be here. I usually have a bag in the car. With basics. Chargers, snacks, a book, a crochet project, and a sweatshirt. I also used to carry a small overnight bag, with basic essentials. But things had been going pretty well. And I took everything out of the car. I need to put those bags back in tomorrow. You just never know... 💜

 

Have You Ever Said Thank You?

I was just wondering, have you ever told anyone on your Medical Team Thank You? Not just in passing. But to sit down and write a card or letter to them. I'm in my 12th year as  caregiver. You'd think that I'd be better at things like this. But I'm not.

My Mom had an oncology appointment this past week. She's so cute! Last month after her appointment, we went to Hobby Lobby. And she bought these NASA socks. Not lying, I had wanted them. But there was only one pair. So I let her buy them. Side note, I'm sorta a NASA geek. I've seen 2 launches, met astronauts, and quite honestly, it's my favorite place to visit in Florida.

Back to my story. My Mom bought the socks and a card. I had no idea what her plans were. She didn't say anything. And I didn't ask. But the night before her appointment, she asked me for a pen. And when I checked in on her, she was deep in thought.

The crazy thing is, I was just chatting to my old boss on the phone. From time to time, I still help with some work things. Telemedicine kind of stuff. Since my job is in another state. A few hundred miles away. But when they are short staffed or overwhelmed, I help when and where I can. 

We were talking about how morale is getting low. Dr. S was planning a little Thank You dinner for his staff. And was asking me what I thought. It actually sounded really nice. I would have loved to attend to.

But it got me thinking. About my Mom's doctors and nurses. Honestly, I really started to think about 2 of my Dad's nurses too. Robyn was his palliative care nurse. She was amazing!!! She was my Dad's nurse for somewhere around a year. I've gotten to speak with her a handful of times since his passing. But I never really got to tell her how much she meant to us. How incredible she was with our entire family, through that difficult time. Or how much, I really depended on her, during his final days. I regret that.

Then there was sweet Mary. She was the CNP for the Hospital Oncologist. She became a sort of Grandma/Best Friend to me. My Dad spent a lot of time in the hospital during his last 2 years. Especially the 6 months leading to his passing. Mary was always there. We'd sit and talk. She bought me a beautiful and religious necklace...that I wore for years! And when the time was coming near, she just let me cry it out. Gosh, that lady meant so much to me! Just about a year ago, I found out she passed away. And I was devastated!

It made me realize, I need to tell more of these people Thank You. Not just in passing. You know, we all do that. Thank You for sending in a prescription. Or Thank You for opening the door. Or even Thank You for whatever it was they did during a visit.

No, I wanted to sit down and write a few cards and letters. So yesterday, somewhere between my 5 hour nap and my chat with my old boss...I sat down. Wrote a letter to my Mom's oncologist, nephrologist, and her cardiology team. I want them to know how much they mean to us. How grateful I am, that they are on her team. 

The entire cardiology team has been wonderful from day 1. Beginning in 2019 they've been right by our sides. In reality, my Mom never should have been part of that group. The doctor has told me himself. But here we are. She has more of a blood pressure issue. But they have still taken us under their wing. And I'm very appreciate of everything they help me with.

Nephrology...from the time we met them in 2019, have been so amazing! Christine is just a gem. My Mom loves talking with her. She looks forward to her appointments. I look forward to those appointments too. She helps us with all sorts of things. And there are days, when I think she senses I need a hug. And I'm not even a hugger. But she comes and give me a hug with some words of encouragement. I truly appreciate it.

And last but, certainly not least, oncology. This entire team, has been sort of a safe place for us. Since 2014. We've seen a few different doctors, lots of nurses, even a change in hospital location. But they've all been so kind! My Mom's oncologist in particular, has been sent from God. I don't say that lightly. In National rankings and what not, I don't know where he falls. But as far as my Mom's care, he is amazing. She has so much trust in this man. And honestly, the way in which he cares for her...I couldn't ask for more.

He kneels down to talk to her. Looks her in the eyes when he's talking about her treatment, tests, or whatever he's explaining to her. I'm not even sure if he is aware of it. But he calls her Mama. Not all the time. But it slips at least 2-3 times during an appointment. That always makes me smile. Because it just shows his concern for her. 

But it's the entire Oncology Team. The nurses and techs are so amazing! Kind, gentle, and so calm. I can call to speak with the nurse a hundred times. With any question. And any one of them is so kind. Well, there is one that tends to yell at me. Nurse D. So I do try and avoid her. One of the receptionists, she has become sort of like a friend. We see her on the weekends if we go listen to music. So she is always reminding us, which band is playing on what day.

I spent a couple of hours, just writing some Thank Yous. You just never know. And things change so quickly. I just want these people to know how amazing they are. And to be really honest, I don't want something to happen. Then I never get the chance to say Thank You.

Back to my Mom. Those socks she bought a month ago, and that card, were for her oncologist. I have no idea what she wrote. But when we were getting out of the car last week, she handed them to me. Told me to hold them until her appointment. When we got into her appointment, she asked for them. And handed them to the doctor. He seemed really touched by the gesture. 

From experience, working in the Medical Field, it's just really nice to hear the words Thank You. To hear that you are doing a good job. And that people appreciate your hard work and caring gestures. I'd encourage you to do the same. If you can. 💜

Family Celebrations

I can't even begin to tell you how long it's been since we've spent time with our extended family. Or when we last went to a big celebration. But yesterday, that is exactly what we did.

My Mom rested all week. Oh, well except for the day of her Oncology appointment. On that day, she got a haircut. And we did a little shopping. Went to Target and Walmart. She found this cute dress. And some smaller clothes. But for the entire week, my Mom rested. She had been looking forward to this wedding for a long time. 

This is my Mom with 2 of her sisters and 1 of her brothers. And the groom...my cousin. It was so nice to see family. To get to chat with people we hadn't seen in years! My Mom and I wore our masks almost the entire time. We obviously took them off to eat. Then to snap a few pictures. But we tried to be as safe as possible. 

I know. It's blurry. This was about 11PM. My Mom was having the BEST time! She danced the night away. Honestly, at one point...I sat there crying. Because of her health, I wasn't sure I'd ever see her dancing and enjoying life again. This was such a treat!

We even got to sit with cousins from out of town. It was the first time I met them. But they were so nice. And I enjoyed chatting with the kids. 3 of the 4 of them, have also battled cancer. It really was a nice day. And we stayed pretty late. I think we got home after midnight. After the weather had changed and we almost blew away.

Here is a picture of most of my first cousins and I. Quite a few people let me know...the clock is ticking. I'm the last one standing. But somehow that doesn't sound right. I know I'm the last one to marry and have kids. And as much as I want that...I'm not sure it will ever happen. #LifeAsACaregiver

It's crazy how events like this, as happy as they are, remind you of the things you are missing. I'm missing a life partner. Babies. Oh, babies. But I also know that my Mom needs me. Like my Dad needed me. That keeps me going.

Ironically on Monday evening, another Uncle of mine, had a serious talk with me. How one day, my Mom won't be here. And I'll be alone. Unless I remedy that. But I'm not lying when I say...unless someone falls from the sky...or I meet them in a Doctor's Waiting Room...well...it just ain't happening. And that makes my heart so sad. But today is not for sadness. It's about happiness and family. And maybe some leftover Sanchez tacos and a nap.  💜

 

New Mexico Gas Rebate

If you are a New Mexico resident, have you heard about the Gas Rebate? It's really a simple process. And you can get a few hundred dollars to help out. Right now, I'm sure we could all use a little help.

If you file taxes, you have nothing to worry about. No paperwork to fill out. But if you happen to not file taxes because of financial reasons, just head over to Yes New Mexico. It takes less than 5 minutes. You just need to enter in basic information. Like your name, SSN, DLN, address, and bank info if you want a direct deposit.  💜

He Must Think I'm Crazy...

Do you want to hear a funny story? As caregivers we do a lot for our loved ones. Some days are hectic and stressful. It's usually the day that our loved one, has some sort of doctor's appointment. Anyone else?

Like every other morning, I got up early. It's still dark outside early. Changed into some workout clothes. And headed to the trail for a run. I've recently found running again. It was a solid staple in my life before caregiving. But I've needed some stress relief lately. I'd started running in the summer. And it quickly became a great habit. Only to be sidelined when I got shingles this fall. So here I am. Running on the riverbank at the crack of dawn. Well before my Mom gets up in the morning. 

I came back all gross and sweaty. But feeling great. Don't you love physical activity? Then I tried to wakeup my Mom. Who had an early appointment with her Oncologist. I say early. But it was scheduled for 9AM. And it was a telemedicine appointment. Honestly, those stress me out more than normal appointments. Because so much can go wrong. It was still technically early for my Mom. So I knew it would be a bit challenging.

My Mom didn't want to wake up. I still had to get her showered, dressed, and fed. I needed to feed the dogs. And send them outside. Which would still cause dramatics. Because they don't realize they're dogs. And if I keep them inside, they'll do nothing but bark when they hear the doctor. Because my Mom's dog HATES men! 

I know this out of experience. Because she tried to attack the phone. Once while we were having an appointment with a cardio fellow. Then I couldn't get her outside. So we ended the call. I got her outside. And the doctor had to call us back. Never again folks. Those 2 will have to go outside. 

Isn't it bad enough that we don't have WIFI at home. So we use my phone. Instead of a tablet or laptop. And my Mom can't hold it. Because of her broken arm. So I have to set something up. To have the phone high enough to see her face. Loud enough for me to hear. So I know what is going on. If I have to make appointments, take her for a test, etc. 

We finally make it through a shower. I'm now drenched. Anyone who has ever had to wear a wet sports bra...knows it took forever to maneuver out of that. So I throw on my nightgown. Clip my hair up. Get my Mom dressed. Comb her hair. And provide her with Huevos Mexicanos, coffee, and a tortilla. I'm a total wreck. Trying to feed the dogs. My Mom's dog...of course is fighting me. Won't eat. But won't leave her food. 2 minutes until appointment time...I'm praying the doctor is running late. Because I have one dog sitting on my Mom's lap, another ready to bite me. And my Mom hasn't eaten much.

I'm literally sweating. And then we get the call before the appointment. From the office. 5 minutes. OMG! Someone come and rescue me. I manage to get my dog outside. And now my Mom is fighting with her dog. As I attempt to bribe her. She's finally heading out the door. And either her or my Mom, drops my Mom's coffee and my phone. No time for this...

I get the dog outside. I'm cleaning up the coffee. Making a new cup. Trying to get my Mom to eat more breakfast before her appointment. Or she won't eat. Because it will be cold. And she remembers she hasn't had her morning meds. Me silently praying the doctor has to take a break or something before calling us.

She's taking her pills, and we get the text to start the appointment. I'm in a full on sweat. My heart is racing. And my Mom now wants me to sit next to her for the appointment. Um, I have a face mask on. That I should have rinsed off about 45 minutes ago. In my nightgown...a bit of TMI here. But I'm being real. No bra. My hair in a hot mess on top of my head. No thanks Mom. Let me just set this up for you and I'll be on the other side of the phone. 

I'm pretty sure the doctor may have gotten an unexpected look at something. As I was trying to make the stupid connection work. Then they got to chatting. And I got to prepping a chicken for the dogs. And one for our dinner. Whole chickens. 

The two of them are chatting away. I don't really know what about. As I now have my hands up the backside of a chicken. Stuffing it with oranges and herbs. When I hear, "Where is Desiree?" And I see my Mom reach for the phone. My panic stricken face. I think she thought twice. I know what she was going to do. Whip the phone around so I could say Hello.

And it happened to be one of those appointments when he needed to chat to us both. I was listening to the plan. My Mom was asking questions. I'm also covered in chicken juices. As I'm trying to finish what I'm doing. And not make any noise by going to wash my hands. I also can't leave the kitchen...because I might miss something from the appointment. 

I think the doctor realized these are probably not the best sort of appointments for us. My Mom has had a couple with him. But at the end of this appointment...he told her, "I'll see you in the office from now on." Thank goodness! Because she'll get up earlier then. And we have to physically be somewhere else. So I don't have to fight with her. And the dogs. And well, I'll have my bra on. So I can talk to the doctor. 

I know. That sounded weird. But it was a weird day. As they were saying their goodbyes, I ran to wash my hands. Hoping my Mom wouldn't pick up the phone. But who knows. When I got back, she was still connected to the call. Maybe he got a look at my 2 chickens. In their pans. On the counter. Or the stack of folded laundry on the chair next to the couch where my Mom was. Maybe even...the box of Christmas decorations. Because I had literally just taken down the Christmas tree. Before I went on my run.

Not all the telemedicine appointments are so crazy. OK, about a year ago, I bought a new phone. Because of the telemed appointments. Got home. My Mom was having an appointment with rheumatology. The phone would not work. We missed the appointment. Just my luck. Every appointment with cardiology has gone smoothly. Since the dog incident. And I actually sit in with my Mom. Because I usually have to take her vitals for them. But for whatever reason...Oncology and these appointments don't sit well for us. Last January, my Mom also had one. In which she dropped my phone into the Christmas Tree. I just don't know. Just glad it's over. This man also probably thinks I'm a nut!