Tuesday, September 5, 2017
This is what the new reality looks like: I empty, rinse, dry and replace the chamber pot, fifteen to twenty times a day. I usually find it on top of my grandmother’s 1880s, or earlier, gallery table, where it is ruining the finish. That’s getting a little better, though, as I have taken to leaving a facecloth there, to catch drips, and he puts the pot down on it, most of the time. Sometimes, when the pot is clean, he adds water for Sylly P to drink. I don’t want it to be full of water when he needs it, so I empty it when I find water in it, too. I cannot convince Elvon that I keep Sylly P amply supplied with water, and his trying to give her some makes me work two ways, getting it out of the chamber pot and replenishing his supply.
When he needs to get into the wheelchair, it can take one minute to ten minutes, to me ringing for help. It depends whether or not he remembers how. A lot of the time, he just tries to haul himself up with his arms, ignoring the fact that he has a perfectly good right leg to stand on. When I explain the procedure, sometimes he gets it, sometimes not. I test all the maneuvers, using only my bad leg to stand on, and they are all easy. He is still physically strong and functional. He just doesn’t know it. Any wonder I get depressed at times.
A shower takes about an hour and a half. I have described it before. Into the wheelchair, on to the pot, off the pot and back into the wheelchair, brush teeth and shave in the wheelchair, while I get clean, into the shower, hang on to the bar while I do all the hosing down, sudsing, scrubbing, and rinsing, back into the chair, on to the towel on the bed, ears, armpits, crotch, bruise cream, pedicure, dressing. It takes a good two hours.
I keep disposable padding under the bottom sheet and towels on it, and I still have to change it most days. Something ugly and/or smelly always happens. Eating is easy, and so is going to the gym, because I am doing all the pushing now.
When I was bemoaning the fact that I didn’t have time to take Bridge lessons on Wednesdays at Varenna, Ted Johnson said, “You have the same 24 hours everyone else has.” But, I don’t. Elvon gets at least four of them, sleep gets eight, after my travel agency business, housekeeping and personal administration, there’s precious little left.
I wrote that on Tuesday, September 5, and just came back on Sunday, September 17.
The week went on, pretty much normal. We had an appointment with our Internist on Thursday and it went well. They have a transfer wheelchair, and, despite the fact that it was twice as wide as Elvon, all went well, and we have the doctor’s certificate necessary to claim on our insurance for coming home early.
Sunday, September 10
This is weird, but I got a call from Cathy, the Physical Therapist, who had been found by Marissa, our Nurse. She wanted to come that very afternoon, so I let her. She was wonderful. She stayed two and a half hours. By the time she left, she had the best handle on him that any PT has ever got. She had him up in the walker, and out in the hall, she tested this and that, exercised him to his limits, and she noticed a lot. When he is tired, which she made sure of, the game changes. It’s as if his brain loses communication with his right knee, which explains what I wrote a few days ago. She wants a second neurological opinion, to see if there is another disease at work, Parkinson’s, for example. It might be a treatable one. Our first Neurologist gave up on Elvon about a year ago. She said there was nothing more to do. Cathy didn’t accept that. Good for her.
Monday, September 11, 2017
I met with Marissa, our nurse, on Sunday, too. We agreed on her care givers coming to shower Elvon for me, to take some of the burden off. All that did was keep me up all night, the night before, worrying about the procedure and wondering what was the point. I woke up exhausted and would rather have slept in, than have to get up and deal with someone coming to help Elvon. I had to teach the procedure, too.
We got showered, had breakfast, and got help with the Lodge’s transport chair, which we needed for our Eye Doctor appointments in Napa. It was a beautiful drive and we arrived relaxed, fifteen minutes early. We settled into the waiting room, at the Eye Care Center, to wait to be called. Five minutes to time, Elvon shared that he needed to pee like a racehorse. I told him to just go in his Depends. He refused, so I took him to the washroom. My doc came out for me as we were getting in there. I had to wave her off. Then Elvon couldn’t get out of the wheelchair. Eventually of the docs came in to help him, and it was very hard. By the time we got him on to the pot, most of it was in the Depend, anyway. I stripped one pant leg off and changed it. By the time we were ready for our appointments, we were 45 minutes late. It’s pretty stressful.
By the time we got out of our one o’clock appointments, it was three and about 100 degrees outside. This is significant, because Elvon couldn’t get out of the transport wheelchair and into the car, and I cannot lift him. The arms on the transport chair are too high and he can’t get enough purchase. By this time, he wasn’t using any leg for anything. I called 911 and three Napa firefighters, in a nice red fire truck, came and loaded him into the car for me. Road work in Sonoma added another half-hour to the journey and we just managed to get home in time to clean up for dinner.
That, of course, involved another Depends change and then he couldn’t get off our own toilet. Yes, we have bars, so did the Eye Doctor. I was in luck. Our dinner partners were John and Jon Soderstrom. John lives across the hall.l Jon, his son, is an RN, and was able to get him into the chair and ready for dinner, which was a lot of fun and just what we needed.
Tuesday, September 12, 2017
Shoot me the next time I book three doctor’s appointments in the same week, but life was different when I booked them. Tuesday’s was 11:15 am at St. Helena hospital, pacemaker check for Elvon. They have good wheelchairs in hospitals, so no worries about the transport chair, for once. We had Atkins’ shakes for breakfast, on the way over the mountain and got there in plenty of time. That visit went well, so did the next day, and a delightful dinner with new inmates Bob and Carole Nicholas.
Thursday, September 14, 2017
The day started on a high for me, when I managed to score business class tickets to Madrid, for my Scenic cruisers, going to Bordeaux. They deserved them. They were hit by Irma, and they had not only their own problems, but those of 40 absentee owners. I was in very good humor when I woke Elvon up for his shower. Our appointment wasn’t until two, so we had plenty of time. Marissa, herself, was in to watch the showering procedure. After Cathy’s evaluation, I feel safer doing it myself again, and that’s what we agreed to do. I can call for support, by pushing the button, if I need it.
We left at 12:30 pm, and arrived in plenty of time. Elvon transferred easily to the transport chair and we were up in Dr. Duncan’s office early. Dr Duncan is our dermatologist. This was our annual full body scan appointment. When we got our little room, Elvon couldn’t get out of the transport chair, so we decided to just leave him there and cover him with a drape. Jenny and I got him undressed, and I was stripped to the waist when, you guessed it, he needed to pee like a racehorse. I told him to just go in his Depends. He refused, again. I stuck my nose out of the room and asked the receptionist to find him a urinal, or something. When I got back into the room, he had his Willy out and it looked like a little fountain. I grabbed a rubber glove and got it over Willy. The fingers filled, one by one. I tied the wrist in a knot. I should have taken a picture, but it got pretty crazy, just about then. In came Jenny, the aide, and Liz, our Nurse Practitioner. They had just called the fire department. Could we not smell the smoke?
We could. I dressed in a flash, and the three of us wrestled poor Elvon back into his clothes and out the door. By this time, the power was off in the office, but still on in the hall, and to the elevator. Of course, we were afraid to take it, until the firemen got there. It’s a volunteer fire department in St. Helena and we are in the middle of crush, the busiest season in wine country. They were there within 15 minutes, though, and set to finding the fire. It was in Dr. Duncan’s air conditioning unit, on the office roof. The A/C unit was a goner, but they quickly isolated it, and pronounced the elevator safe to use. Once again, Elvon was helped into the car, by the fire department. Bless his heart, he’s a trooper. He still wanted his Model Bakery peanut butter cookie. We always have one when we go through St. Helena. It was yummy, and the ride home was beautiful.
By the time we got home, I didn’t feel like doing any work, and we had some nice foie gras left over from the Women’s Technical Wine Group party last Saturday. I called Ben Miller and Tom Slade, our dinner partners, and invited them to our balcony for foie. It was delightful, and so are they. We laughed a lot and it was very good for us.
Friday. September 15, 2015
Wouldn’t you know it? Friday was a party day at the Lodge. Ulla and John Brown and Pati and Don Simon came over for it. Elvon and I were late for the party, due to more peeing and changing, with which I’ll not bore you, as this is long enough and pissy enough, as it is. I finally got smart and pushed the button. A care giver arrived and I went to the party. She delivered Elvon ten minutes later and all’s well. We had a great after party, too. Now, I just have a lot of slacks to iron.
It’s now less that two weeks until we walk to support Canine Companions for Independence. If you have an extra tenner or so, that Harvey or Irma didn’t get, check out my page at http://support.cci.org/site/TR/DogFest/General?px=1149237&pg=personal&fr_id=1470
Glenn Coates said:
Helen, my thoughts and definite prayers are with you… Really my dear. You take courage. It’s not easy. Many hugs!! Glenn
I truly feel for you – this is too much for you. Do they have a Memory Care unit there? The one here is terrific and Dale seems very content. The staff there is terrific and they do the showering and constant clean-up for Dale, allowing me to have a bit of a life for myself!
The main thing is for you to stay well so that you can be there for Elvon, but maybe not so intensely.
Helen Megan said:
Thanks, Mariann. You know, if anyone does. Yes, we do have memory care here. It’s another building, called “The Terraces.” I have put Elvon on the list. I will be able to say “yes” or “no” whenever a spot comes up. And I’ll be coming to visit you for a break some time in the next couple of months. Good for both of us.
Kathy Stefano said:
Leave it to you my dear to find humor in a rubber glove! I hope it was at least the pretty new purple ones. With my three hospital stays in 5 months (two for new hips) and experience with exactly what you are going through, no one will love you less for getting outside help. They are trained professionals and there to ease your burden so you can share and enjoy his good moments. You are already his hero. Hugs to you both and as soon as I’m ok’d to drive I will come visit.
Dear Helen, I had tears in my eyes reading this latest post…you are truly a good wife. Think about you a lot and do send my wishes that things will get better sooner than later! What is that old expression “hang in there”! Hugs, Skippy
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