Tuesday, October 13, 2009

Another Update On Mr. AOW (Updated Intermittently)

Previous posts about Mr. AOW's stroke of September 15 are here, here and here.

Yesterday's meeting with Mr. AOW's case team was grim. I'll be busy over the next several days with choosing another care facility, the euphemism being "skilled nursing facility." The list I was handed is entitled "Nursing Home List." **sigh**

Click "Turn the page" for additional information.
During yesterday's meeting, the first words out of the doctor's mouth were "We can't fix what happened." He went on to explain that the primary medical goal is to control Mr. AOW's blood pressure so that he doesn't have another brain bleed. The doctor also stated that Mr. AOW will probably never drive again. This news was devastating for both of us!

At this point, Mr. AOW needs support on all four sides just to stay upright as his brain isn't sure where upright is. Trunk control is inconsistent. The inability to perceive body and head position is also compounded by Mr. AOW's previous brain surgery, lack of muscle control of the eyes, and left neglect. He also needs 50% help to transfer from one surface to another.

Mr. AOW is mentally oriented most of the time although he occasionally "feels" as if he's in California or in one of the outbuildings on our property.

There is no accurate way to predict how much Mr. AOW will recover over the next six months to one year. Therapy (occupational, physical, and speech) is necessary to help the brain rewire as much as possible, so I'm trying to choose a facility which offers the appropriate therapies and has the endorsement of our health-insurance policy.

Under his health-insurance plan, obtained on June 1, Mr. AOW has 60 days of coverage per benefit period for a skilled nursing facility. He will not be entitled to any Medicare coverage until he's been on Social Security Disability for two years. The application for SSDI is in process but delayed until the birth certificate has been obtained.

Mr. AOW will be discharged from acute physical rehabilitation no later than October 20, so we are in a bit of a time crunch with making the choice for the next facility. Sadly, much of the choice isn't mine or my husband's; a lot depends upon which facility is willing to accept him and the insurance plan's coverage.

Prayers appreciated.

Update on October 14 @ 8:57 AM:
I spoke with Mr. AOW by phone last night. His voice and speech were the best I've heard since the stroke! He also told me that he did well with all his therapies yesterday.

Of course, the hospital is no longer considering his progress. Instead, the decision is made to transfer Mr. AOW out, never mind their stated protocol for keeping a patient as along as that patient is making measurable progress.

Mr. AOW is greatly fatigued, normal for post-stroke or after any brain injury. He is focused on his therpies and getting good sleep instead of calling me at all hours.

Update on October 15 @ 7:18 AM:
I will visit Mr. AOW this evening. One of my friends is going with me to show us how to do tactile sequencing.

I myself know how to employ rhythmic writing.

In sum, the plan is to supplement and augment the therapies which Mr. AOW is receiving from the medical community.

Update on October 15 @ 8:55 AM:
Wonderful news!

Mr. AOW has been accepted in the rehab center of my choice! This facility has the exact therapies he needs and is very close to home. And Mr. AOW will recognize the area, too.

He will be transferred to later than Monday.

Update on October 17 @ 4:05 PM:
Mr. AOW has settled in at the new facility. Today, he had physical therapist. The therapist (Usama!) got Mr. AOW up on his feet to take two steps, with help and railings of course. Afterwards, he was exhausted; nevertheless, I took in to the in-facility barber shop for a haircut and a beard trim. He'll sleep until dinner time, about two hours from now.

Instead of minced food and thickened drinks, Mr. AOW is now consuming normal food and beverages most of the time. He does have to be careful when he swallows.

Tonight, I will take to him some of the stuffed pepper my cousin made for me. I will, of course, chop up the stuffed pepper so that Mr. AOW takes small, safe bites. I also have a small box of Dove Dark Chocolates, a gift from one of my dear friends in Tennessee. I'm sure that I'll have to ration the chocolate.

Update on October 17 @ 4:05 PM:
Yesterday, very early in the morning, I took Cameo in to visit Mr. AOW. At first, she was wary, but in just a few minutes, she settled down and began purring. This evening, I'll try to capture Mysti and take her in for a visit. Dusti is the paranoid type, but I'll probably take her in for a visit as well.

Mr. AOW had occupational therapy yesterday. The occupational therapist, a woman from India, is a slave driver! Good! Both Mr. AOW and I appreciate her dedication to helping him learn the necessary compensations.

After yesterday's occupational therapy, Mr. AOW and I went to the "social." All but two at the "social" were over eighty years old. Consequently, Mr. AOW won all the contests, one of which was "Name as many models of cars as you can." One of the puzzles handed out involved comparing two side-by-side drawings to find the differences; this activity crosses the brain's midline and was the kind of learning therapy I'll be doing with Mr. AOW.

After the "social," which Mr. AOW greatly enjoyed in spite of the age discrepancy, two of our neighbors visited and brought homemade vegetable beef soup. Mr. AOW chose to eat the soup instead of what was served by the nursing home. I have plenty of leftover soup to give him today and tomorrow.

After dinner, Mr. AOW insisted on being wheeled outside. The cold weather, unseasonable for this time of year, sent us right back inside.

On the negative side, Mr. AOW is having trouble staying in the wheelchair because the table he needs on which to rest his left arm is unsteady and falls off. Once yesterday, Mr. AOW slid all the way out of the wheelchair. Four people were required to lift him into the bed! I'll be contacting the administrator if this wheelchair deficit isn't straightened out by the therapists by Tuesday evening.

Update on October 21 @ 8:45 PM:
I've been spending several hours a day with Mr. AOW or out and about tending to getting things ready for him to come home. We don't have a release date yet.

My friend who does tactile sequencing spent nearly three hours working with Mr. AOW today. She noticed that sensation is improving. While she was working with him, I went to For Eyes to pick up Mr. AOW's prescription eyeglasses (one pair for distance, one pair for reading); he had broken his previous pairs. The doctors said that the eyeglasses wouldn't make any difference. Ah, but they do! Mr. AOW can now see well enough to read the written page and the TV channel logos!

Those eyeglasses are a mixed blessing, however. Mr. AOW can now see well enough to dial the phone with some accuracy.

Mr. AOW's attitude is good (some due to anosognosia), and he continues to make progress with all his therapies.

The following video explains a bit about anosognosia, quite common in cases of left neglect:

Read more about left neglect HERE.

Update on October 23 @ 3:35 PM:
Today the physical therapist braced Mr. AOW's left leg. Mr. AOW was able to stand with little support for several seconds! Afterwards, he was exhausted. Even so, I kept him sitting in the wheelchair for a few hours so as to extend his endurance.

The weather was nice outside, so we spent some private time outside the building. The fall foliage is quite lovely right now, and Mr. AOW appreciated being able to see that beauty before the weekend rains arrive. Being outside also helps him to become more oriented as to his geographical location.

On the negative side, Mr. AOW is losing too much weight. I need to supplement the facility's meals with food from home. He tires easily when he's eating, so I do feed him some of the time so that he gets enough nutrition, particularly protein. A kind friend dropped off some chicken noodle soup on Wednesday evening. Mr. AOW loves chicken noodle soup! I'll be taking some to him this evening to supplement the facility's dinner.

Update on October 28 @ 6:15 AM:
Today is Mr. AOW's 60th birthday. If at all possible, I'll take him out in the car so that we can meet with friends from the VFW. Mr. AOW knows that we might go out for a while, but he has no idea that a surprise party is planned. If he's unable to go out and about (big rainstorm here), his friends will bring the party to him.

Mr. AOW is taking a lot of interest in and attending the various activities at the nursing home. They offer movies, crafts, bingo, word puzzles, etc. Every day has three activities! On Friday, there will be a costume party; Mr. AOW will wear his Santa suit.

His appetite yesterday was very good. I also supplemented with a serving of a casserole my neighbor made and Boost protein drink.

Mr. AOW is making good progress with his various therapies at the nursing home. The affected leg does support weight! Unfortunately, the affected arm and hand remain useless; this may be the permanent paralysis the doctor warned us about from the beginning. In fact, the stroke began with the loss of use of the left hand. The anosognosia is a blessing in that Mr. AOW is not depressed or discouraged.

Update on November 3 @ 5:30 AM:
Yesterday, the nursing home projected that Mr. AOW will be released in 2-3 weeks, sooner if the health-insurance company cuts off the payments to the nursing home. I'm busy now scrambling for home medical equipment, including a hospital bed, a high-backed wheelchair (trunk support needed at this poinst), and other items. Mostly, I'm given lists of providers and have to do all the navigation of the maze on my own. In addition, along with a crew coming to build a wheelchair ramp, this weekend I have am trying to schedule a group to come into the house and move furniture upstairs and into the piano room so as to make space in the living room for the hospital bed and the behemoth of a wheelchair. I can see how this coming weekend will be spent. **sigh**

Mr. AOW was in a brighter mood yesterday. As usual, he participated in all opportunities for therapy, and he even went to a couple of the crafts activities although he got ticked off that he couldn't keep the products: deviled eggs and cookies.

This evening, Mr. AOW and I will board a handicapped taxi and venture out to the voting booth. He could have voted via absentee ballot except that I missed by one day the deadline for getting the ballot. **sigh again**

Update on November 8 @ 6:54 AM:
Please go to this new thread for recent information about Mr. AOW.

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posted by Always On Watch @ 10/13/2009 02:04:00 AM