Day 1,982 Out from Don's Stroke

We went to a near-by little town today with the intention of getting groceries, but I didn’t feel like fighting the Saturday afternoon crowd---Don slept in this morning---so we changed horses in the middle of the stream and we stopped for dinner at the oriental restaurant, got gas and a car wash. Then, at $2.38 a gallon for gas, we spent an hour running the country roads around Don’s old stomping grounds. These Saturday trips into town always result in Don getting out more speech because he tries to tell me stories as we pass by the various houses of his youth. He was a paper boy in this tiny town with eighty people on his route and if it wasn’t for his aphasia, I’ll bet he could still name them all. He’s got the proverbial memory like an elephant.

I found a notebook this afternoon that I’d kept in Don’s room at the sub-acute nursing home where he was transferred after his stroke. The first entry was made on June 8th, 2000, on the 18th day out from the stroke and it went like this: Don was moved here today around noon from the rehabilitation hospital which was very depressing for both of us. Tomorrow they’ll evaluate him, so not much is happening today or tomorrow. Twice they brought water in for Don to sip, which he can’t have. His liquids all need to be thickened or he’ll chock and aspirate them into his lungs. Dinner didn’t go well either. They tried to serve him a hot dog and grapes, which is a far cry from the puréed foods he was getting at the rehab hospital. He ended up with no dinner at all.

Day 19: The head nurse says it will be Tuesday---5 days away---before all the people involved have evaluated Don and turned their reports in to the social worker and before we’ll be able to talk to the doctor in charge of his case. He could starve to death before Tuesday! All the food trays came to his room wrong again today, with stuff he can’t possibly eat without chocking.

Day 20: Today turned out to be a comedy of errors---if the errors hadn’t been so serious, depleting Don’s energy and endurance! Around noon they ordered an ambulance to take Don to the hospital for a cardio inversion. His heart is out of rhythm and racing so badly that he looks as if he’s been running marathons. When they picked him up someone had put down on the transfer papers that Don could talk---which, of course, he can’t---so when the ambulance people couldn’t get any words out of him they thought he was having stroke right there and then and they changed his destination, taking him to another hospital that specializes in neurology. In the meantime, I, Don’s brother and his cardiologist were waiting and waiting for the ambulance to come to the right hospital. Don, upon arriving at the other hospital, was put through a bunch of test he didn’t need. (Why didn’t he get that kind of service twenty days ago instead of letting him lay in emergency for hours without doing a thing but "observe"?!) When we finally located the missing Don via a bunch of phone calls, Roger and I went racing over to the other hospital to straighten the mess out and to get Don over to where he needed to be. However, their ER personal preferred to believe that erroneous check mark on the transfer papers instead of us when we told them that Don hadn’t spoken a single word since the stroke twenty days ago. By the time we got it all sorted out and got him transferred, almost five hours had passed and Don’s heart doctor had left for the weekend. So Don got parked in a room to wait until Monday.

Day 21: Today was blissfully peaceful. We discouraged all visitors so that Don could get a much needed rest. He doesn’t even have a roommate!

Day 22: They’ve got good nurses at this hospital. One of them got Don an outside catheter so that he doesn’t have to wear diapers. He’s being pumped full of fluids because he was so dehydrated from not getting enough thickened liquids down. His heart rate is slowing down a little bit but the rhythm is still wacky. His blood pressure is too low and that is being addressed. Don sat up in bed for several hours, awake and alert this afternoon. We played tic-tac-toe on a dry wipe board and he won! I still can’t---won’t--- accept the rehab hospital’s prognosis. “Vegetables” can’t play tic-tac-toe!

Jean Riva ©

Jaded Jean

I think I’m getting by jaded by mentoring and hanging around the stroke community. I ran into someone today whose husband had a stroke a few months ago but he was not affected physically at all. He did, however, have some “mental and personality problems that keeps him from working,” she said. Then she adds, “It’s much easier for you because you can see what’s wrong with your husband.”

Excuse me! Just because Don has physical disabilities that can be cataloged with the eye doesn’t mean he didn’t also have to go through a grieving process over losing the life style he’d had before! It doesn’t mean he didn’t have to overcome some major impulse control, anger and cognitive issues! I said this to the woman, using my best oh-so-sweet, motherly voice. Maybe it was a little too sweet because that started a pissing contest. HER husband was WORSE to deal with and the bottom line was---after the contest ended---that she was filing for divorce.

The term ‘bitch slap’ came to my mind but you know me, I could do that if I was sitting behind a computer keyboard using the printed word as a riding crop, but in person I’m Miss. Manners. So, I gently tried to point out that her husband’s stroke was very recent and things could change a lot in the coming months.

“Not likely!” she replied. “He doesn’t try at all. He won’t do anything his shrink suggests.”

At that point I’m thinking to myself: Why am I letting the woman get under my skin? Am I having a feel-sorry-for-Jean-day and I didn’t like having someone telling me how “easy” I have it? Am I just being defensive because this woman could be metaphorically married to any number of survivors who I’ve come to know and like? Probably it was a combination of the two.

I finally decided that this woman was looking for validation that it was okay to divorce her husband. I didn’t give it to her. Screw her! Yes, I’m jaded. I’m tired to the bone from sleeping less than five hour a night most nights---it’s been a hard caregiver month. My ears hurt from listening to the long, loud no-word operas that Don’s been singing lately and everyone in the house, including the dog, is on a different medication schedule. My Nurse Nancy uniform is too tight and I haven’t had a strawberry truffle in the house in months. Woo is me. Woo is you. But the future Ms. Divorcee can find another hen house to lay her eggs.

Jean Riva ©