Fucked-Up-ed-ness

Pardon the french, but that is how the day has gone.

My mother has been rather ill on and off for about 7 years or so. There are many things wrong with her.

• Heart – She had a rare growth that landed her in the medical journals, and led to an uber-rare heart surgery that saved her life. As a result, she has been on heart meds, such as blood thinners for most of her life, and lives in atrial fib (never in sinus rhythm). Because of the surgery and where we were in medical science at the time, she has a metal mesh “cage” holding her sternum together, which is rather interesting to see on x-rays.
• Stomach – When I was 4 or 5, she had some kind of operation on her stomach which reduced it to about 1/2. While I believe it was a tumor, it had the results of a gastric bypass, albeit more than 30 years ago. She has old ulcers that have healed over (scar tissue). She has GERD. She will sometimes have random, serious, internal bleeding (coming out both ends). After 7 years and more endoscopies than I can count, they have never found a source for the bleeding. The bleeding itself has resulted in numerous blood transfusions, and three incidents of “won’t last the night” calls (two of which came from Mexico which is rather nerve-wracking for the person – namely me – in the U.S.). In the last go-round they did a colonoscopy, and did remove several pre-cancerous polyps. She can’t eat a lot, some stuff she can’t eat at all, and she has a lot of vomiting episodes which can cause serious weight loss. She’s around 80 pounds at the moment.
• Lungs – She has asthma, and a weird lung disease of tropical origin that I cannot spell and they don’t know how she got it. It makes her prone to coughing, giving her chest pains (see metal cage in her chest), and vomiting (see stomach issues). She is also very susceptible to bronchitis and pneumonia, and ER doctors always assume she’s a smoker, although she never has been (although I question the decade of the 60’s, but she insists). She is on oxygen at night.
• Diabetes – I never knew this, but you can develop diabetes from high medical trauma. 7 years ago, she almost died on a cruise ship. What saved her was an emergency blood drive on board ship, while they transfused her overnight and they got close enough to shore that a medivac unit could get to her. She spent a week in a Mexican ICU, and another month in the hospital here in the U.S. That’s when she developed diabetes, which is insulin dependent.
• Mental issues – She DEFINITELY has undiagnosed mental issues which can be exaggerated depending on whatever medications she’s on at the time for the various medical crises that are occurring. My house growing up was… interesting. Picture being in 6th grade or so, and being woken up to your mother vaccuming your room around 3:30am because it simply had to be done then. Or literally kicking your door in because she had laundry to give you and she felt you were too slow to get to the door to open it for her. Like I said. Mental issues.

And we come to today. Last night into this morning, she became too weak to walk. My dad, with my help, can care for her full time – as long as she is mobile. As long as she can make it with wheelchair assistance to the car for the doctors, or other places, or walk to the bathroom with assistance, we can care for her. But if she’s not semi-mobile, we’re simply not equipped. Long story short, we took her to the ER, where they basically said there’s nothing medically wrong with her right now, and do you have an advance directive? Time for hospice or a nursing home, ’cause we’re not going to help you. She has been moving into dementia. So my day was spent alternatively picking her up to adjust her on the bed, or holding her down so she couldn’t get out of bed (we didn’t want them to use restraints). We have moved her into a nursing home where she’s supposed to be getting physical therapy to strengthen her again to be able to walk. I don’t know if she’ll be coming back out again. This isn’t what either my mom and dad want, but we can’t care for her this way, so I told my dad if he wants her home, we have to get help in the home, period. He’s always fought this, but I think he finally sees the writing on the wall.

In addition, she has always insisted that she didn’t want to be kept alive by artificial means. But… Now she won’t talk about it. She said that the hospital has her wishes on file (they can’t find it), and when I tell her that, and that I just need to know what SHE wants, she tells me it’s not “your fucking business.” Yes, that’s my 80 year old mother’s mouth for you. (My children didn’t learn the term “asshole” from me.)

When she’s not in “right mind” she’ll have full conversations with you, they just aren’t quite right. Today, in the ER, she went in and out of lucidity. Frankly, though, she’d also had two doses of morphine. I don’t know why, but instead of rolling with it, my dad corrects her. I rolled with it, and it went a lot better. For example, she understood that she was going to another facility. Out of nowhere she tries to get out of bed. I put her back and asked what she needed. She said she needed to pack (she knew she was going somewhere). I just reassured her that I had already packed for her, and her stuff was waiting for her. She wanted to make sure that Jack (her dog, dead 45 years ago) was being watched. I assured her he was. She was satisfied. My dad, on the other hand, is telling her she’s not going on a trip, she’s in the hospital, and she doesn’t have a dog. That just seemed to confuse her. I don’t know what the “right” way to handle it is, I just know that my way seems to calm her and make sense for whatever she thinks is going on. His seems to agitate her, probably because she knows something’s not quite right, and he’s confirming that.

And, apparently, when she dies, she wants her body donated to science, because of that ultra-rare heart thing. And, my dad needs advance directive stuff. So my afternoon has consisted of research, but I’ve got paperwork in place in case it happens today (it won’t – but I’m a planner), they just need to sign on the dotted line.

It’s been a very strange, fucked up day. And now I’m on “middle of the night call” alert.

Being a grownup sucks.