January 30, 2018
TMI Alert: This one doesn’t sugarcoat anything.
For the third January in a row, we’ve been to the ER. This time, hubby was admitted for pneumonia on January 2. Ten days later he was moved to a skilled nursing rehab facility to work on regaining strength and balance. That was 2 weeks of stress, because he was disoriented, and someone had to be with him most of the time. Early on, he wandered into other rooms, used a trash can for a toilet, and was generally hard to deal with in a facility where almost none of the patients are ambulatory. Still, to their credit, they were kind, helpful and tolerant. Everyone remarked about his sweet personality. He made great progress there.
After two weeks in rehab, I brought him home on Friday, January 26.
The last 4 days have been Hell on Earth. He is almost constantly confused and disoriented. I was hoping the confusion was due to another change of scenery. He was disoriented in the hospital at first, then that improved. At the rehab place the first few days were the worst, then he improved. I was under the impression that would be the pattern at home, but it’s not.
He’s also had several loud, profane, verbal outbursts, usually directed at me, including throwing things, followed by an immediate 180 degree turnaround to old, sweet Bill.
He’s had intermittent nighttime incontinence for the last 4 or 5 months, but it hasn’t been difficult to manage. I’ve got all the pads, pants, liners, waterproof mattress pads and “special underwear,” but I’ve had to strip the bed and do laundry every morning since he got home Friday.
He gets up in the night (I’m a very sound sleeper, so don’t usually know), changes clothes multiple times or puts on layers (sometimes inside out), strews Depends (fresh and used) all over the place, and worse. My morning routine now consists of donning a pair of rubber gloves and finding all the clothes that are wet and scattered to and fro, searching out stuff tucked into bookshelves and hanging on doorknobs or vacuum cleaners, etc., stripping the bed, and doing laundry, followed by mopping. I don’t remember signing up for this.
All before my morning coffee.
As I write this he’s sitting in the living room wearing his Christmas sweater over his college sweatshirt, a pair of sweatpants, and a pair of Depends on the outside, like a geriatric version of Super Man. If I suggest he change, I get cussed out.
I’m learning to pick my battles.
The two-faced *itch who once suggested I don’t need respite care because I have (had at that time) my job needs to live my life for 24 hours. I find myself hoping she has to deal with this someday, but even so, she’s rich and will probably be able to hire people. Still….
I’ve mopped three bathrooms and unclogged one toilet today and done two loads of laundry I hadn’t planned on doing. It’s worse than potty training twins, or maybe quadruplets.
At least there’s a pattern. If I see him coming out of the bathroom with pants or sweats on inside out, I check to see if he’s wearing underwear (usually not), then take him back in to get everything situated. If I’m lucky I don’t get yelled at or challenged.
“What am I supposed to do?” is a common plea whenever I ask him to remove an item of clothing, either for a shower or to get the bottom half presentable again.
Don’t suggest I hire somebody to help. I can’t afford it, and Medicare won’t pay for it. Besides, it’s almost to the point I need 24-hour help.
Ted, our friend from church who helps out (he started as a companion, but he now mops up pee and shit), is already on the track toward sainthood. I keep wondering when he’ll decide he’s had enough. I know I have, but I don’t have the option to leave.
The State of Texas has nothing to offer. Oh, they have a bit, but you have to be practically living on a park bench to qualify. Right now, that’s an attractive option.
I don’t know who my husband is anymore. I don’t recognize this man, my husband of 35.5 years, my soulmate. I’m a virtual widow caring for a shell of a man who vaguely resembles the brilliant, funny, strong and kind person I fell in love with a lifetime ago.
I’ve had to give up most of my freelance writing, which doesn’t help our financial situation one bit–but I’m hoping things will fall into enough of a routine that I can start working from home again soon.
He’s also healthier than I am. Other than his Alzheimer’s meds, he doesn’t have any issues like heart disease or other chronic ills that weaken the body.
I’ve totally lost my identity. I don’t know who I am, either. And I’m wondering how much longer I can take this.
Sorry if I’ve ruined your day, but I figured it was time to get real about this. Too many people whitewash the ugly truth.
Alzheimer’s sucks. If you’re the patient, you must feel trapped inside a mental prison with no way to communicate frustrations or needs. If you’re the family caregiver, you’re stuck between a rock and a hard place, fighting for survival while praying for a way to escape.