Archive for February, 2011


About 90% back to normal vitality. With an interesting story.

As you know, I have been sick with a monstrous viral respiratory infection. (Why wasn’t it called “flu”? No idea.) During Ernie’s first week in assisted living (RGT), I was in bed for three days, leaving him on his own. Probably that was good, in that it may have speeded up his adjustment, forced it. After I could get out of bed–still blowing, hacking, and miserable, I got back to work on all the tasks associated with Ernie’s transition from our apartment to RGT.

For one thing, Ernie needed clothes. For the past year, he hadn’t left our apartment except for medical appointments. We’d given away all his clothes except a couple of shirts and pants. He wore the same four scrub pants and three scrub tops exclusively. At RGT he has to go to the dining room for his meals, out in public. So I had to order more changes of clothing for him, plus a bathrobe and slippers. That required ordering several options from which he could choose, then returning the ones he didn’t want.

I had to get a table and chairs for his room, which I found online after futilely shopping locally. I had to meet with various staff  members. There seemed to be new chores daily. And I tried to take care of myself by doing things I enjoyed–even though I was feeling rotten. In other words, I was very busy and living as normally as I could.

Last Friday I even went back to visiting my clients in the care center, whom I hadn’t seen in five weeks. After which I collapsed on Ernie’s bed.

Nevertheless, on Saturday I went to Michael’s where we chatted in the hot tub for a couple of hours. Sunday morning I could hardly walk to the bathroom, I was that weak. The cough had subsided quite a bit and I wasn’t blowing my nose, but I was SO weak and shaky. I decided that I’d better try bed-rest to get myself well.

I told Ernie that I wouldn’t be leaving our apartment until I felt better and I put myself on a 45-minute interval regimen–45 minutes on the bed, 45 minutes doing what had to be done, 45 minutes back on the bed, using my timer as disciplinarian. By Wednesday I felt no better, a little less coughing but general malaise and shakiness.

As I had about decided that maybe I should call my doctor, my phone rang. It was the receptionist at the Medical Center. “I’ve been thinking about you,” she said. “Dr. C has two last-minute openings today. Would you like to see her for any reason?” Amazing.

After Dr. C. questioned and examined me, she said, in effect, “You’re not sick.” She told me I had pushed myself too hard when I actually was sick, and that was why my body was taking so long to recover. But, clinically, I wasn’t sick. She ordered bloodwork just to make sure.

When I asked her what she thought about my bed-rest regimen, she said she didn’t think it was a good idea. She said, “Does this remind you of CFS? I’m afraid that if you continue resting, you may relapse back into CFS. Instead, be active, just go a little slower and take a break in the afternoon.”

I went back home still feeling just as lousy, but very intrigued by her speculation that I could return toME/CFS by behaving as though I had ME/CFS.

The next morning, I awakened at 6:30 feeling much better. I went and practiced the piano–just for about 45 minutes, not 90 minutes. Then I walked, not three miles, just one mile. I took Ernie’s laundry and snack foods for him, then went to a nearby piano store and tried out some used pianos. In the afternoon, I watched a movie.

I was feeling so much better. It was as though my doctor had said, “You aren’t sick,” and I stopped being sick! A miraculous cure!

Maybe the four days of bed-rest had something to do with it, but the suddenness of my sense of recovery sure surprised me.

Now here’s the paradox. When I had ME/CFS, I had to spend 14 hours a day in silence on my bed to be able to be somewhat active the other hours and to have enough energy for occasional special events. What Dr. C told me was that I should NOT be resting to get well, that I should be more active. And, sure enough, I’m feeling much better.

As for Ernie, he is adapting wonderfully, graciously, to his new environment. It’s a slow process, getting the staff at RGT to adapt to him, getting his person and his room as we want them, waiting for deliveries and installations and so on. But he just called me to tell  me he has passed the test for self-medication. I’ve been working on getting that done for three weeks. Hooray! As of Monday, he won’t have to wait until someone brings him his Tylenol.

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Birthday celebration

Yesterday Ernie had his 86th birthday. I was at a loss about how to celebrate, as we couldn’t comfortably have a meal in his room and he is not drinking alcohol at present. So I ordered flowers delivered with a love note.

But when I got to his room, the first thing I saw was this creation:

A huge and incredibly beautiful fruit arrangement from a shop right here in Catonsville: Edible Arrangements. It was spectacular. Believe me, it attracted a lot of attention from residents and staff as it was carried through the halls to Ernie’s room. Attached to the fruit design was a birthday balloon and card to Dad, Grandad, Future Grandad, and Great-Grandad. It was sent by daughter Patti, granddaughter Melissa, Grandson Patrick, granddaughter-to-be Juliet, and great-granddaughters Aly and Lilly.

Well, Ernie deeply appreciated the loving gift and greetings. But equally important, they made him a hero. Since we couldn’t possibly eat all this scrumptious fruit, we decided to share it with the staff. Ever since, nurses, aides, housekeeping, and activities staff have been stopping by to thank him.

Thank you, all. We love you.

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Where Ernie was

Two weeks ago (can it be that long?) my sons moved Ernie’s belongings into his room at RGT (assisted living), leaving me with a mostly empty room.

Next to the kitchen entrance there are the stereo cabinet and a bookcase. On the walls are the picture hangers. All of Ernie’s print and photo collection is stacked in his room.

Oh yes. I still have the dining table and two chairs.

Below is a print Ernie gave me 25 years ago. I think I’ll keep it here.

Maybe today I’ll take down all the picture hangers.

It feels very strange, this empty space.

There seem to be empty spaces in my mind, too. I do, or forget to do, the oddest things. On Wednesday I filled out two carryout orders for dinner, but I put a name (mine) on only one of them. Yesterday the manager asked me if I had intended to take carryout to Ernie. No. I had not intentionally filled out two orders. My mind was blank.

Meanwhile, Ernie is focused on adapting to life at RGT. There are empty spaces in his mind, as well, and it takes extraordinary effort for him to do what is required of him–like get to the podiatrist by 8:45 this morning, after first having been given an appointment for 9:15.

We are living separate lives now. That’s  not exactly accurate: we are functioning in new and different conditions, separately.

So far, I have been consumed by being sick (still coughing and feeling ill) and working at making Ernie as comfortable as possible. He needs clothes he hasn’t needed before. He needs more furnishings for his room. He needs little things left here. I need to remember to stock his fridge. It’s been impossible for me to imagine how I will live. What will my life be like? Since I don’t know that, I can’t begin to think about how to furnish the vacant room. How will I use it?

One thing I will do. I’m going to buy a piano.

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Ernie is in assisted living (Renaissance Gardens Terrace) here at Charlestown, about a quarter mile away from my building, half a mile by road or through the hallways. I am utterly and totally wrecked.

During the night Friday, I literally crashed–face down on the kitchen floor. A hard fall. I took this picture three days later, after some of the swelling and bruising had subsided. The whole right side of my body is bruised and sore and I ache all over. My upper lip was 3X swollen.

Moreover, I’m in the third week of a monster respiratory infection. Today it’s all I can do to sit at the keyboard.

When I told the Director of Nursing that moving Ernie to the care center had become an emergency, the staff responded immediately. I also e-mailed son Michael that I was in desperate condition. The next day (January 20th) he took me out for coffee in the morning. From there we met with the admissions coordinator for assisted living, learned about the process, and saw the available rooms.

On Monday, January 24th, the head nurse for RGT came to our apartment to screen Ernie for admission. He passed the test. The next day I took him by wheelchair to the transitional room at RGT. It’s like a hotel room that an incoming resident can use until their own room is ready for occupancy. Since then I’ve been making three trips a day there, walking (a mile R/T), taking him breakfast and dinner and carting stuff to his room. I used a flatbed to take his recliner and floor lamp, so he would have a comfortable place to sit immediately.

On Saturday Michael, Pete (with his pickup truck), and I moved all of Ernie’s furniture and belongings into the room Ernie had chosen. On Sunday Michael returned to connect, install, fix, and move things, and by 11:00 a.m. Ernie was resting on his own bed in his own room. I spent a couple of hours putting  stuff away and organizing. Then I went back with our dinner from carryout.

Because of Ernie’s dietary needs and because of my “cold”, I’ve continued to take breakfast and dinner to eat in his room, but since Michael dug out my car from the frozen snow on Sunday, I’ve been driving there instead of walking and carrying through the halls.

Taking care of Ernie in assisted living so far has been much harder than taking care of Ernie at home. To make him as comfortable as possible, I have to work out all kinds of details with the staff, and I have to help him understand and adjust to this abrupt change in our life.

For the past 14 days I have been as sick as I can remember. Meanwhile, working hard all the time and feeling very anxious about Ernie’s well-being. There are so many things to attend to and to remember. It would be exhausting if I were well.

I’ve been trying to rest some, but it’s hard with so much on my mind. Even with my sleeping meds, I haven’t been sleeping after 3:00 a.m. Yesterday afternoon I lay down with the timer set for 60 minutes and made myself stay there. And began crying. And trembling.

Took Ernie dinner, as usual, and while we were eating, I became catatonic. By this I mean that for about 15 minutes, I was unable to move or think or respond in any way. I sat motionless with my dinner in my lap. Then I started to sob. I put the carryout box on the bed and headed for the bathroom. After a few minutes, Ernie called, “JoWynn, are you okay?”

I couldn’t answer, but I stepped outside the door so that he could see me.

In a fog, moving slowly in a daze, as though under water (to mix metaphors), I cleaned up the room. Searched frantically for the little vial of brandy I was sure I’d brought Ernie for his bedtime nip without finding it.  What had I done with the brandy? That did it. I knew I could not go on. Could I even drive home, park, and make it into my building?

I told Ernie not to expect to see  me today. I had intended to be there as long as it took to get the necessary towel bar installed over his toilet and to make sure the nurse tested him for self-medication so he wouldn’t have to wait six hours for his Tylenol, but I can’t do it.

I couldn’t even eat my dinner last night.  Around 7:30 Ernie phoned me. “I just wanted to know that you were home safe and sound,” he said. “I’m safe,” I told him, “but not sound.”

I went to bed at 8:00 and stayed there until 8:30 this morning.

The cold symptoms have abated somewhat, but I still feel “flu-sick.” Aching all over and nervous.

Ernie’s on his own today. I’m going back to bed.

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