My father's 1253-day journey through Alzheimer's Disease (AD) and my feelings about it. Now my aunt appears to have dementia, so this is her chronicle as well.
Wednesday, February 15, 2012
Losing Grandma, Part 2
When we got to the hospital yesterday, my grandma was in ICU & they initially said only 2 people could visit her at a time, and then they allowed my husband in also. My grandmother was totally unconscious, IVs in both arms, breathing tube in, monitors hooked to everything. She actually didn't LOOK bad--she wasn't blue around the lips or nails, her face wasn't sunken in, her eyes were still prominent. But she was completely unresponsive. Her hands were very cold, not death cold but close, and stayed however I molded her fingers. Although the doctor had called my cell phone earlier (while I was in Stop and Shop), saying he wanted a "family meeting" no such meeting really took place. People in scrubs (doctors, nurses, PA, who knows) wandered in and out and some of them spoke to us. The bottom line was that the bleed in my grandma's brain was pretty much total. She wasn't quite brain dead, but only a step above. There was absolutely no hope of recovery. Even though all that was true, they had still brought in a neurosurgeon to consult on the case. My mom put the kabosh on that, she's almost 94 and nearly brain-dead, don't go messing around in her head at this point.
I have a theory on what happened that night. I think that she had the stroke early in the night, maybe midnight. My mom said she was partway across the bed; perhaps she was getting up to use the bathroom (which she normally did between 11 and midnight) and had the stroke then, silently. She lay there unconscious or unable to call for help until the bleed spread so far it impacted her breathing, which woke my mom up around 3:30. Ironically, across town, I was awake too, sick as a dog, not even thinking of my grandma, just searching for medicine. Perhaps if it had happened Sunday at the dinner table, we could have saved her. We'll never know.
I thought that "pulling the plug" on someone would be an involved process involving paperwork and possibly lawyers or people in suits at any rate, lots of "are you sures" (like when you delete a file from your computer). But my mom said, "We want to remove the breathing tube," and the (person in scrubs) only nodded and then immediately starting unhooking everything. Very nonchalant. I kinda freaked out. I found out they'd had no priest give her last rites and now they were unplugging her like she was a toaster. I didn't like that.
They unplugged everything but the tube and found the hospital chaplain, a lovely little woman who told us that a priest had actually been there until 1:30 but due to the time my grandma came in she hadn't been on the list. I have no idea if they got her a priest in time, but the chaplain said she had a prayer just for unhooking machines. She brought her assistant and gave us copies and we all read it aloud. It had the "my father's mansion has many rooms" Bible bit and the 23d Psalm, which I love, but it was the new-school version, which I don't like much. Give me King James any day for that solemn stuff. There was a part about "enlightening the pagans" which did make me grin and nudge my husband when I said it (being that we're pagans).
The person who brought in the respiratory therapist to actually unhook the breathing tube said her guess was that my grandmother wouldn't die instantly. I tended to agree. She was unhooked at 3:50 p.m. Immediately her breathing became loud and labored, her shoulders were lifting with each breath. Her oxygen saturation with the tube had only been around 70 so I can't imagine it was any better breathing on her own.
We stayed until 4:30 and there was no change. But it was clear to me that my grandma wasn't there anymore. She was actually even more gone than my dad had been--at least he would squeeze my hand once in a while, and when I brought the dog and put his hand on the dog, he'd pet him.
And of course it was awful for my mom. Although my dad wasn't on machines, we did have to make decisions that were, in essence "kill him" and saying "take out the tube" is the same order. It's only been 4 1/2 years since we went through all this with my dad. My grandma's mother lived to be 99 and we kinda expected, in our hearts, for her to follow that path.
Then again, she refused to take her blood pressure medicine. This summer the doctor told her right out that her next stroke would kill her or put her in a nursing home and my grandma said "I don't care" so she got her wish right?
We went to my mom's house. My husband's mom came by with a bag of Chinese food (we couldn't go out to eat--it was Valentine's Day, remember!) and we sat around with cell phones and made calls, leaving the house phone open for call-backs. My grandmother's last living brother was devastated. I really think my mom should have called him at 6 a.m. when she originally got home from the hospital and not waited 12 hours. Yes, he's in California with a time difference but maybe he would have wanted to hop a plane and get there before we pulled the plug? That's one thing I don't agree with how my mom handled it. He called back, begging my mom "Are you sure she can't get better? Maybe she'll wake up." No one wants their sister to die even if she's 93. Since we couldn't tell him when she would die, or when the funeral would be, he decided to come Thursday through Tuesday.
We left my mom's house around 7 and I crashed. I am so sick. My ear infection has spread to my sinuses and the pressure and pain across my face is unreal. I need about 2 days in bed with a bottle of Nyquil and it's not going to happen.
My mom had already taken a shower and gotten ready for bed when my grandmother's sister in law (her baby brother's wife) and her 3 daughters showed up after visiting the hospital. My aunt was insistent that my grandmother "looked good and was breathing fine". (She's a great one for denial, when her husband was dying of a brain tumor a few years ago she kept saying he was getting better.) Her daughters contradicted her. I woke up at 2:04 a.m. and unlike the night before, I knew. I looked around, closed my eyes and felt around, but I couldn't feel her. I took more medicine, went to sleep again, and wasn't surprised when my mom called at 6 a.m. to say the hospital called her at 2:20. But like me, she had already been awake. I think 2:04 was when she actually passed.
We had an 11 a.m. appointment at the funeral home which went well because my grandma had paid for everything in 1997 and laid out exactly what she wanted. All we had to do was update her obituary and pick out her prayer card. Plus that funeral home has handled everyone in my mom's family forever; he's a friend of the family as well as the funeral director. He made it very easy. I had some pictures of my grandma on my cell phone and he picked which ones to use for make-up and agreed with our choice for her obituary (the one I used above). The funeral is Friday, no wake the night before, no church, everything at the funeral home. My grandma even paid for a limo.
We picked a local restaurant to host the after-funeral gathering (my mom's dog is too crazy and her house too small, as we found out when my dad died) and spent an hour there (and $800) planning that. Another $800 on flowers and then we all went home until Friday, and I crashed again, and woke up to have some soup and write this.
I've always noticed that my grandma, my mom and I have (had) the same hands. I didn't have my phone with me on Sunday and I decided to take the "3 hands" picture on Friday when we all went out for grandma's birthday. Well we're all going out on Friday for lunch, but it's nothing like we planned! (The chaplain suggested wryly when we told her about the Friday birthday lunch, "Obviously Lena made other plans for that day!") I had to take the 3 hands picture with an essentially dead grandma. But I got it. I have no children. Never again will these hands grace the world once my mom and I are gone.
My father's 1253-day journey through Alzheimer's Disease (AD) and my feelings about it. Now my aunt appears to have dementia, so this is her chronicle as well. All material is copyrighted by Gevera Bert Piedmont (except where noted and where quoted from other sources); please do not repost without permission.
"The cost of Alzheimer's? Everything you ever owned, everything you ever thought you would get, and things you never even thought about."
"It's a long, slow slide into oblivion, with no brakes."
"If this was a paper journal, the ink would be running with tears."
"Imagine a really beautiful, perfect statue, left out in the wind and rain for centuries, to be worn away, until it’s only retained the shape of a person, not any of the individuality. That’s what Alzheimer’s did to my father. It wore him away, all the sharp edges and crisp points that made him Bob, who loved his family and his pets and his raspberry bushes, and turned him into a fearful person with a vague and confused stare."
"It's a nasty disease, surrounded by shadows and small, largely unseen tragedies."--Terry Pratchett
This is a reminder that Alzheimer's disease affects real people, real families. My dad wasn't a monster, just a man whose brain was slowly eaten by a terrible disease.