The surgeon was on the floor and ran in with the nurses as hear heart was begining to quickly fail. He actually opened up her chest right there in the room and stuck his thumb in the hole that had formed in her heart as the staff wheeled him, straddling my aunt's body, on the bed to the surgical suite. She recovered, but her chest would always be weak as the breast bone wouldn't ever graft normally now. Aunt S recovered, but that was her premature retirement. Because she retired about 8 years early, she's had money problems ever since.
A little over a year ago, just after mom got diagnosed with COPD and was put on oxygen, she had a similar problem. She couldn't get enough air, was diagnosed with COPD (the sisters do everything together), and had to be on oxygen. But my aunt was far worse off than my mom. She'd at times have so much trouble getting air in that she'd have a panic attack and make the situation worse. She couldn't sleep lying down and ended up on several anti-anxiety medications including ativan.
My Aunt S has the same stubborn nature that most of my family does, and it showed when she started lying to her doctors. For example, the doctor ordered her to be on 10 liters of oxygen at all times and up to 12 with activity. But my aunt had just been given the gift of a portable oxygen concentrator ($5000!!!) from her church that would allow her to move around by just carrying it over her shoulder like a big heavy purse. But it can only produce 5 liters of oxygen. So that's all she was ever on.
Several times my Mom would call my aunt's children... my cousin R and my cousin J... and try to get them to help her out. Either come and take care of her or bring her to live with them. My cousin J lives about 6 hours away in the upper peninsula with his girlfriend while my cousin R lives about 11 hours away in Connecticut with her family. I think they may have stepped up and helped more, but my aunt would actively lie to them just like she did to he doctors. She'd convince them she's fine and they'd go back to their lives far from caring for their mother. And I refusued to let my mother step up and help more than she could. I mean, I'm hear to help my Mom because she needs it.... I won't become the proxy to help out my aunt. That's my cousins' jobs.
So, Aunt S became more and more of a shut in. She couldn't really drive anymore and that's why B has her car now. She'd get her groceries delivered and her lung doctor even came by to visit HER. How many doctors, let alone specialists, do house calls now-a-days?
Well, fast forward to one week ago. Mom went to visit Aunt S and she was in bad shape. She'd fell off the toilet that day because she was dizzy. She'd landed on the bathtub, bruising her entire right side. And more than that specific example, she just looked bad. Understand, Aunt S no longer looked healthy at any time, so she was looking pretty bad at that time for my mom to mention it. Mom tried to convince her to go to the hospital but she just refused. Mom called my cousin R, saying that Aunt S was in bad shape, but history repeated itself and Aunt S convinced cousin R that she was okay.
Later that day, Aunt S called 911 and an ambulance took her to the emergency room. Mom, being the generous soul she is, went to visit her. She'd been in the hospital several times over the past year and we kind of got accustomed to what was going to happen. They'd dignose her with a COPD exasperation (probably from not being on enough oxygen), would give her some steroids and other drugs to temporarily help her breath better, monitor her for several days, reprimand her on her self care and get her to agree to take better care of herself (she always agreed, but never did take better care of herself), then finally discharge her.
But this was different. This was worse. Aunt S was having a heart attack.
At first they thought it was a STEMI. I won't go into the medical details but a STEMI is the bad heart attack that more often than not, kills people. After some tests, they realized it was a Non STEMI heart attack. Better, but still bad. They'd have to do a heart cath to see just how bad it was and probably put in some stents, but that was to be scheduled a few days out.
I know this didn't cause this fast decline in my Aunt, but it certainly didn't help. She was in the ER for 30 hours. It took them more than a full day to find her a room.
A quick aside as this is relevant to everybody now, during tis Covid-19 pandemic. When they say we need to keep hospitals freed up to handle the oncoming cases, this is why. Our hospital is already full and we don't have ANY Covid-19 cases in this county... although the state has went from 2 cases to 33 in this same time period I'm talking about.
So she got a room and my mom came home exhausted. She seemed to be doing good on Monday, resting from the ordeal. Tuesday, Mom went in to visit her while I went to the endodontists to get the last part of my root canal done. When I got home all I wanted to do is sit down, let the numbing agent wear off, and get something to eat on my newly hurting mouth. About an hour after I got back though, I got a text from Mom that Aunt S was doing bad. That the doctor's were talking about canceling the heart cath unless she 'perked up'. That they were even talking about putting her on palative care.
If you don't know, here's a quick primer on the levels of medical care.
- Regular medical care has the intent to make you better. To get you as healthy as you can be and keep you there.
- Palative care has the intent of keeping you comfortable but won't make any extraordinary efforts to get you healthier. They will, however, perform painless procedures and prescribe medications that help keep you alive.
- The best example of this would be Aunt S's heart cath. On palative care she wouldn't get one as it would hurt her to get the procedure and it's outcome while good in the long term probably wouldn't help in the shorter term (say for the next year).
- Hospice care has the intent of keeping you comfortable while you die. Hospice isn't standardized as far as I know, but around here you have to have a diagnosis of less than six months to get in unit hospice care. In unit simply means you live there. In home hospice care generally means you have a diagnosis of less than 2 years.
- If you have a hard time understanding the diagnosis time frames, consider a bad cancer diagnosis where the doctor gives you two years to live IF you go through some hard to live with chemotherapy, but only six months to live without it. If you go into hospice, you won't get any chemo as that's not about keeping you comfortable.
So the thought of the doctors putting her on hospice care is frightening. It means that they no longer think getting you healthy for the long term is worth while. Mom naturally sounded the alarm and by the time I got there, the cousins had been notified that they needed to come. To even keep enough oxygen in her, Aunt S needed to be on a Bipap which forced air into your lungs and is very uncomfortable. But when they took that off of her and put her on 12 liters of oxygen through nasal canula, she would quickly start to bottom out.
It's almost certain that the heart attack started this downfall, but it isn't what was making this current problem. That was her lungs. And that's why the heart became a secondary concern.
The next day I had to go to work, but my mind and heart were back in that hospital room. I know this might sound cruel, but I'm likely only writing to myself and at best am only writing to a few people, so I'd better be honest, my heart was with my mom who was losing her sister. Aunt S passing away would make me sad for a bit, but not all that much. This isn't my grandfather passing, or my father. It wouldn't be like when I lose my mother or my brothers, or even one of my close friends. So my heart was with mom and that's where all my efforts would be.
My cousin R came in that day, and later my cousin J finally came down. The discussion with the hospital staff quickly went from offering palative care, to suggesting palative care and offering hospice care, to suggesting hospice care. It was just clear that Aunt S was doing downhill and it was unlikely she'd last all that long. When pressed into the corner by my mom, the doctor (the hospitalist in charge of my aunts's overall care) suggested she might have 2 weeks. Wednesday night she was in hospice.
My cousin J went back home, which I'm not sure I'll ever be able to forgive him for. I mean, come on man. Your mother is dying. Your sister is in tears all the time. Your aunt (my mother) is in tears all the time. Yes, it's hard to deal with and yes, I'd feel like running away from that kind of pain too... but SHE'S DYING! BE WITH YOUR GODDAMNED MOTHER WHILE SHE DIES!!!!
Anyway, J left. Aunt S kept going downhill. She was taken off her previous meds and only given meds to keep her comfortable. At first it was ativan and morphine. They later added Haldol to help keep her calm and/or unconscious. They've upped the dose on all of those.
I got to see her again yesterday and it's just awful. On the one hand, I'm a nurse and I know what's going on inside of her. Her organs are failing which will cause pain, she's having trouble breathing when doing anything other than lying there and being unconscious which will cause anxiety and fear, so it's best to keep her comfortable and barely, if at all, conscious. She's lying in back with her mouth wide open as she struggles to get enough air in. Her breathing is very shallow, very irregular, and can pause for up to a minute at a time.
She's dying.
Again, this is awful to say, but I want her to die quickly. It's awful to die and I believe both mentally and spiritually that dying quickly is better than dying slowly. And more than all of that, it's just so difficult for my mom. I can't stand seeing her like this. She's trying to be brave and help her sister. she's trying to be brave and help her niece and nephew. But she's sad and having to watch her sister suffer. So I want my aunt to die. I want her to pass on and help everybody move on from being sad to genuinely grieving and mourning.
I think my cousin J made it down last night. They said she may have only hours left. And that fits with what I saw... her lungs aren't able to maintain any regularity and that's one of the last steps. She'll pass when she can't take in that last breath. Her heart will stop soon after as there won't be any oxygen, and then her mind will stop as it will lose it's supply.
I've already talked to my boss and she's fine with me taking a few days for bereavement. I'll have to use annual leave as I've already ate up my sick time from a bad migraine season and all this dental work. Soon, I'm going to get ready and head over to be with the family for awhile. I won't stay for too long as while I want them to be comfortable and comforted, I'm sure some part of my cousins can see that I'm not there for their mother's passing. I'm there for my own mother's comfort.
I'm there for the very thing that they couldn't offer their own mother before she was dying.
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