My father died 10 years ago. It was devastating to our entire family. Family, to us anyway, is just about everything. To this day I'm still striving to earn my father's pride. As hard as it was for me to lose my father, it was ten times as hard for my mother to lose her husband. They had plans to grow old and travel together. To enjoy both their retirements and reap all the benefits they'd worked so hard for. After the initial round of grief, I thought Mom would be okay as she started to travel with my aunt... her sister. Mom and Aunt S have always been very close, and now that they were both widows, they became even closer.
Mom, at the time, was very healthy. Sure, she had type 2 diabetes, and smoked, and had several other long standing problems, but she could get up and run with the best of them. She was about 60 at the time and looking at her and her activity level would put her closer to 50. Then she started having heart problems. Over the course of a year she went into the cardiologist and had a bunch of tests and figured out that she needed to have a triple bypass. Just to rush through this part, she had a bad recovery from the surgery and after another year of tests, they found out that none of the bypasses were viable. They all failed. And their best guess was that they failed soon after the surgery... so while mom was trying to recover from open heart surgery, she didn't have the improvement the bypasses were supposed to offer.
She never really recovered from that surgery. They eventually put in some stents, but the damage was done. I'd say that at that point she aged about 15 to 20 years. Instead of a very healthy strong 63 year old she was a very unhealthy weak 83 year old. I'm not ready to say that she's grown accustomed to her limitations. She is constantly trying to push herself past them. It's one of the main reasons I'm still living with her. So that I can help her as much as she'll allow. She knows damned well that she can't take the stairs to the basement without losing her breath, but she refuses to ask for help and gets upset when I just do things for her without asking. When she does eventually ask it's always "Can I ask you a huge favor please?". The huge favor is going down to get some frozen food out of the freezer downstairs. Huge.
So she's been struggling with her health. My Aunt S has had her own health issues, but they've recently gotten a lot worse. Aunt S has never been a big woman. Short and thin. But where she's been hovering around 130 pounds for years and years, she's now down below 90 pounds. She broke her hip recently by simply falling on it, and while recovering from that she was put on oxygen. They don't have a diagnosis for what's going on. Maybe it's COPD, maybe it's something worse. She has a pulmonologist and a cardiologist, and several other specialists looking into her condition..... but they don't have answers and barely have treatments. One of the treatments is that she's on constant oxygen therapy. She's on 4 liters of O2 constantly and can take it up to 6 liters when she feels the extra need.
To put that level of oxygen therapy in context, as a nurse I can only put someone on 2 liters of oxygen without a doctor's order. Those big 3 foot ball O2 canisters you'll occasionally see someone wheeling behind them? She goes through one of those in 3 hours. It's bad. My mom has tried to help out Aunt S as much as she can, but I finally stepped in and laid down the law. I told Mom that she was not going to be living with Aunt S and taking care of her. That if she needed that level of care, then she needed to either rely on her own children (who don't live anywhere near her) or be put into a care home. I don't like either of those options, but Mom simply isn't healthy enough to take care of herself fully, let alone take care of Aunt S. When Mom came home finally she admitted that watching Aunt S struggle like that was incredibly difficult. She even admitted that she wouldn't ever be able to live on O2 like that and hinted at suicide as an option to avoid such a fate.
So that brings us up to this past weekend. Both Mom and my brother R were sick last week. It happens and I wasn't overly concerned as it seemed like a bad seasonal cold. I had to work that weekend so I didn't get much of a chance to really focus on her, but Sunday night I paid attention... and Mom was REALLY sick. I could hear every breath she took and it sounded awful. Understand, I wasn't TRYING to listen to her breath... I could just hear the rattle in it. I told her in no uncertain terms that she was going to see her doctor in the morning. What I wanted to do was take her to the hospital, but I know that was an almost impossible scenario to pull off. She would simply refuse. Hell, getting her to call the doctor's office and get in that day was going to be a hard sell all by itself.
So Monday morning rolls around and I was surprised by Mom's admission of needing to see the doctor. I took her in and dropped her off at the door, then parked the car. When I got in to sit with her, Mom admitted that she couldn't make it to the counter... that she had simply gotten to the seat she was in and had to sit down as she couldn't catch her breath. I told her I would handle it and got her checked in. When they called her back I got a wheelchair and wheeled her back to the exam room.
Now, Mom's doctor wasn't there that day so we were dealing with a Nurse Practitioner that neither of us knew. She was happy and upbeat and seemed to know her shit. After listening to Mom's lungs she ordered a breathing treatment and told her that she was going to treat her for pneumonia as her lungs sounded just awful. She'd order a chest X-Ray just to be safe, but even if it didn't show pneumonia, she'd still treat for it as the antibiotics would weed out any other infection going on. After the breathing treatment they grabbed an O2 saturation level. It was 78%
I want to express just how frightening that number is. This is measuring how much oxygen is in your blood. You measure it at someone's finger tip and in a perfectly healthy person is should bet between 97% and 100%. Even I, a pack-a-day smoker can easily hit 97%. If you dip below 94% it is very concerning and shows a problem in your body. Below 88% is considered a medical emergency and will get in a stay in the hospital.
Mom was 78% AFTER a breathing treatment.
The NP started saying that mom needed to go to the ER and get on some oxygen. Mom shook her head no. I'm sure she would have said no outright, but she couldn't catch her breath enough to really speak. Seriously, she couldn't breathe well enough to speak, but she was refusing the medical professionals order to go to the emergency room. If Mom had been there alone she would have outright refused and come home on oral antibiotics.
I don't often step on Mom's toes and tell her how things are going to be. Me telling her that she wasn't going to be caring for Aunt S earlier was really strange for me to do, and now here I was stepping into that situation again. I told the NP that I'd get her to the hospital and drover her right over there. Mom was pissed. We got right back into triage and after a few quick tests and questions, got her right back into an ER room. I don't think Mom was understanding how dire this situation was. She didn't get right back into a room because the NP had called or because she was special... she got back there because any medical profesional will FREAK OUT with someone having an O2 sat of 78%.
To put it another way... 78% O2 sat is a sign of dying.
We were in the ER most of the day. They had Mom on oxygen almost immediately and had it cranked up to 3 liters just to get her O2 level up to 92%. They performed some tests and gave her some breathing treatments, but her O2 level kept dropping. The X-Ray didn't show any pneumonia or masses and her blood work didn't show any major problems. By the time they got her a room they had given her 3 breathing treatments but her O2 level was still falling and she was eventually on 4 liters just to keep her O2 level at 92%. The diagnoses was COPD exasperation.
Mom didn't have a previous diagnosis of COPD.
So over the next two days they have her large amounts of steroids to help her over this hump and kept her on Oxygen. At this point my worry was skyrocketing. Remember, Mom had confided to me that she didn't want to live with being on oxygen like her sister now has to be and everything was pointing her to possibly being on oxygen for the rest of her life. Mom hasn't had the strongest will to live ever since her husband died and her own health went down the tubes years ago. All of her planning over the past 8 or so years has been with the thought that "I won't be here much longer". Seriously. When the house needed to be re-painted she conferred with my brother and I on what color to pain the house because "it will be your house soon enough". The same thing when we needed to replace the AC unit. And the roof. And the washing machine. For years now my Mom has been planning on dying soon and now she is faced with the very thing she's been so scared of... living in an even less capable way, constantly hooked up to an oxygen tube.
And I was going on vacation. The plane ticket was purchased, the room was booked, and I was considering canceling it all with the honest fear that Mom would get released from the hospital and try to commit suicide.
I eventually had a talk with her and convinced her that this might very well be a temporary situation. That a COPD exasperation was different than living with COPD. That through the use of inhalers and maybe steroids she could expect to recover and not need oxygen. I felt secure enough that she wouldn't end things at least long enough for me to take the trip down to New Orleans. But I barely enjoyed myself down there. I worked hard at forgetting what was going on so that I could enjoy my friends company, but any moment I let myself think about it I got worried about Mom. I even got sick on the last couple days of the trip and yes, I'm fairly sure that it was at least partially due to stress.
I got home late Sunday night to find Mom in her chair.... with an oxygen concentrator behind her pumping away. She was still on 2 liters with orders to bump it up to 4 liters if she was going to do any activity. She had 4 of those big tanks of O2 and a car to pull one with her so that she could leave the house if she wanted to. She has an appointment with her doctor next week to go over her continued treatment, but until then she's expected to stay on oxygen. And that's a double edged sword in itself.
Mom is a smoker. So am I. So is R. We all smoke in the house. Well, you can't smoke while on oxygen and shouldn't smoke anywhere near the machine or the nasal canula. So to have a cigarette, mom needs to pull off the nasal canula and step outside. Again, understand that she has orders to put her O2 up to 4 liters if she's moving around... and to smoke she has to take it off completely, walk outside, and then smoke which in itself will reduce her O2 level. And although I'm primarily concerned with what she's going through, I'd be lying if I said I wassn't upset on how it affects me too. Her concentrator is a few feet outside of my room... so I can't smoke where I sit either. I have to stop whatever I'm doing, go outside, and smoke there. I guess if I was following the letter of the 'rules' I could smoke here. The guy that delivered the O2 concentrator said you had to stay at least 5 feet away from the nasal canula to smoke and I'm outside of that radius. But if Mom had to go through that, I'm going to do it with her. R's room is quite a bit further away and he's smoking there... but I'm not going to do that to Mom. I know damned well that she would be able to smell my cigarette smoke and that would drive her insane.
So that's where we are now. Mom is still improving. She took her O2 sat earlier today and on the 2 liters it was up to 97%. I'd bet that she could reduce her oxygen to 1 liter and stay above that magical 92%. And in a week? Maybe she'll be doing well enough to be off oxygen completely or maybe just need it while being active. But until we get that diagnosis and treatment order I'll be on edge. I don't know how Mom will handle it if she's told that this is now her future... being on oxygen for the rest of her life. Being in the situation that she only recently told me that she couldn't stand to live with.
Sympathy, that sounds pretty dang shitty for all concerned. If you'd like, I can pray, but ultimately I am but a stranger on the internet who feels you on this one. So... appropriate gesture of support.
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