Archive for July, 2010

Black jacket finished

At last I’ve finished this project which I began in January.


Initially I had planned to put silk ribbon embroidery between the S shapes, but now I and two others think it looks finished as is.

Here’s the shell I’m wearing with the jacket and pants.


For the collar, cuffs, and pockets, I couched wavy lines of copper purl and copper metallic braid with amber seed beads in each wave.


Here I tried to get away with a different size copper purl when I ran out of the purl I’d been using. When that didn’t work, now that I have a car, I drove 2.5 miles to the excellent shop, The Stitching Post and got what I needed.

Wrong size purl_edited-1

When I ran out of the amber beads and could not get more from the online site they’d come from, neighbor Kathy told me about a bead shop in Catonsville, Precious Stones, also just 2.5 miles away. I took one of the amber beads with me and showed it to the owner. She led me to a display wall of bead mixes and handed me a vial in which I could see plenty of amber beads. While there I noticed a table display of unusual buttons. I had already decided to replace the black button on the shell with something copper, but I sure didn’t expect to find just the right button there.


The button is attached with four of the amber seed beads. The neckline is the couched copper purl and metallic braid.


Now all I need is a cool weather occasion to wear the ensemble. Oh, and earrings to go with. I think I’ll have to make them. Back to Precious Stones.


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How is Ernie? How am I?

Since I’ve received several inquiries, I suppose other people are wondering, too.

Ernie has not changed since coming home from rehab. He is extremely weak, can’t stand or walk without a walker. Although he is not bed-bound, he has to lie down frequently throughout the day. He does a little something, then lies down. What he can do includes sponge-bathing and dressing himself, fixing his breakfast and lunch, looking at the newspaper and magazines, getting himself to and from the toilet. To shower he has to have my help, and it is such an effort for him that we’ve only done it once. He is in constant pain from spinal osteoporosis and arthritis, for which only lying down provides some relief. His only medications are Tylenol and once-a-week Fosamax for bone-building.

His cognitive functioning is much more limited. He says he reads the words but doesn’t really get much meaning. He hasn’t turned on his computer. To speak to him I have to be face-to-face, up close, loud and slow.

When the paperwork is completed today and tomorrow, I will have succeeded in stopping all home health services. Our objective is for Ernie to be as comfortable as possible, and having nurses and therapists coming here just made him feel worse. There’s nothing they can do for him. We know he’s not going to get better.

As for me, I’m trying to live as normally as possible. I can leave Ernie at home alone. He says that’s okay and he wants me to go and do. So I’m practicing the piano in the Music Room before swimming every morning. I’m assisting the teacher of a swimming class. We’re teaching 80-year-olds who’ve never swum. I’ve gone shopping. I continue my volunteer work at the care center, and I plan on going to a family reunion on Saturday.

For my stitcher friends, I am keeping up with TAST, working small samplers, such as this one;

and I’m back to work on my black jacket. adding copper trim to the collar, cuffs, and pockets.

Although I’m fully functional, symptoms have flared and I only feel good when I am away from home—which isn’t much.

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Brain attacks

Ernie will be coming home tomorrow, Wednesday. Then I will be living with a man who can have another brain attack at any time. I wasn’t afraid of them before June 27th. Now I know how bad it can be.

Ernie’s first brain attack occurred in December 2006. He became unable to speak anything but gibberish with an occasional word thrown in. He was taken to the Emergency Room and from there he was admitted to the hospital. All the neurological tests and scans were done. After 18 hours, his speech returned. The neurologist said he thought Ernie may have had a TIA, but he wasn’t sure. It wasn’t typical. He prescribed Aggrenox to prevent stroke.

Again in 2008 he had an attack disturbing enough to warrant another ER trip, but this time his speech and functioning returned after about six hours and we came home. The neurologist we saw after that event said he didn’t think there had been a TIA. He thought it was a narrowing of the blood vessels to the area of the brain that controls vision and speech, and that it was simply due to aging.

We resolved not to return to the ER, which is an awful experience, but to simply wait out these attacks at home. They occurred months apart, not frequently. Each one leaving him a little less functional.

On April 28th, Ernie had another attack and this time he fell and cut his head so badly that we had to go to the ER for suturing and to be checked for possible head injury, but I refused to have him admitted to the hospital for observation and we came home after about six hours there.

When we went to the Medical Center to have the sutures removed, the available physician strongly advised us to see a neurologist. Having no belief that another neurologist, with yet another opinion, would do any good, Ernie had already made up his mind that he was not going to undergo all the arduous testing again. We just waited for his next scheduled appointment with his own doctor to discuss it with him. He convinced Ernie that the neurologist the other doctors had recommended was worth seeing, so we went. Following the brain attack that resulted in the fall, Ernie could no longer walk outside our apartment. I had to take him to appointments by wheelchair. The trip by wheelchair shuttle to the neurologist’s office was extremely painful for him.

The first thing I told the neurologist was that we were not interested in prolonging Ernie’s life and that we did not want any unnecessary medical procedures. He responded appropriately, using the test results he could get online from the hospital. Very positively and convincingly, he said that what Ernie had been having were seizures, not vascular problems. He prescribed anti-seizure medication which Ernie took for three weeks with no problems.

On June 14th, he had a fairly mild brain attack that passed by dinner time, with him just resting at home. However, he had been completely mute and unable to get my attention for the first few hours, though I was in the next room the whole time. This scared me. I called the neurologist who told me to increase the dosage of Keppra, which we did. On June 16th, Ernie had an all-day attack, starting at 4:40 a.m. when he fell trying to get to the bathroom. Until midafternoon I had to physically restrain him from getting up because of the risk of falling. Again I called the neurologist. He said, “Reduce the dosage. I really don’t know what’s going on.”

Two days later, Ernie had another attack. Without calling the doctor, I stopped the Keppra. He had another attack the next day—four brain attacks in one week. Did Keppra cause them? No way of knowing, but this anti-seizure medication certainly didn’t prevent these attacks.

A week passed with no attacks, then he had one on Saturday, that lasted only a few hours. The next day, June 27th, came the main event.

We call these episodes “brain attacks” because there has been no definitive diagnosis. What the doctors agree on is that they do not know what is going on. No diagnosis. No treatment.

Since the first fall, with the head injury, I have been aware of the risk of falling, and so was Ernie. He was being very risk-averse. Then the series of attacks starting June 14th increased my anxiety. Nevertheless, I have continued to go away from home, leaving him alone in the apartment.

But what about now? I have seen him out of his mind and out of control. Now that I’ve seen the worst attack and its aftermath and I know that it can happen again, how am I supposed to live? I wrote that this post would be “all about me.” Well, it’s not exactly. It’s about what I’ve been dealing with.

I’ll just say that for a couple of months I have had an intensely itchy rash that has not responded to two courses of steroid treatment or to antihistamine treatment. Three doctors have said they’ve never seen anything like it.

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But he didn’t die

On June 27th my husband suffered a massive brain attack. In the ER, the doctor, putting his hand on my back, said he was sorry there was nothing he could do. He said, “You made the right decision,” referring to the Do Not Resuscitate directive. Ernie was admitted to the hospital on palliative care only. I wondered whether my birthday, June 30th, would be Ernie’s death day. On that day, Wednesday, he was moved to the rehab center here at Charlestown. The doctor told me it could take three to five days. Ernie was barely responsive, inert, still on “comfort care” only–oxygen, but no medication or nutrition whatsoever.

At home I was already thinking this is no longer “our” apartment; it is “my” apartment.

But on Thursday he began to talk a little, and when food was brought (soft diet), he ate some of it.

When the nurse practitioner saw him on Friday, she said they had to try some therapy, required for Medicare coverage. It would be gentle, and if it didn’t do any good, the next step would be hospice. However, he clearly wasn’t at death’s door. Then I was wondering whether he would stay alive, but unable to function much, like so many of the residents I see when I visit at the Care Center. Meanwhile, he continued to show small signs of improvement.

A week after his admission to the Dorsey Center, on palliative care and mild therapy only, the social worker came to meet us and do her admission procedure. By this time, Ernie was able to sit up for short periods. He could answer her questions about what day is this, and so on. At the end of the meeting she said that in two weeks, the team there would decide whether Ernie would go home or to the Care Center. After she left, I told Ernie what she had said. He was silent for a few minutes, then he said, “Is today the 7th?” Yes. Pause. “So I have until the 21st to pass all the therapy tests.” Knowing that he might be sent to live in the Care Center motivated him.

Ever since that realization, he has been pushing himself to get stronger. As I write, it is two weeks since we spent seven hours in the Emergency Room. Today Ernie bathed and dressed himself without assistance, and, using a walker, walked from his room to the dining room for breakfast. He walked there again for a mid-day dinner. He read a bit of the newspaper, and he can talk with me almost as well as he could before the brain attack.

It looks as though he will be coming home. I meet with the team tomorrow.

In my next post I will fill in the details and write about the effects this episode has had on me. I told Ernie that what I post will be “all about me.” He hates having anyone know about him.

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