Birthday with Daniel

by Daniel Myers-Bowman (freshman at Manchester College)

On Sunday, I helped Grandpa Carl celebrate his birthday by taking him to visit Doreen in Ft. Wayne. A friend of mine was kind enough to lend us a car. We spent much of the day doing crosswords, which seem to be getting much easier for her. For Carl's birthday dinner, we brought in some Chinese food, which we all enjoyed very much. Doreen's condition gets better every time I see her. The Rehab hospital is able to meet all of her needs quite well, from what I could tell. The nurses responded very quickly whenever she needed help, and treat her with great care. I think she is in a good place for now, while we wait for her to be able to move to Timbercrest.

Birthday Greetings

(The photo at right was taken during Carl and Doreen's 60th anniversary celebration during the summer of 2007.)

Tomorrow, Sunday, November 16, is Carl's birthday. If you get the chance, you can post a message here for him to read. My guess is that he'll be in church in the morning then headed to Fort Wayne to visit Doreen. All of us want to express our appreciation for all the support and encouragement you've given dad over the past 5 1/2 months.

Progress and Patience

November 9 & 10, 2008
by Judy

(Doreen is pictured here with her roommate for the past several weeks.)
Another move! As of yesterday, Monday November 10, Doreen has moved to Lutheran Rehabilitation Hospital of Fort Wayne. We saw this as an exciting move ahead, but Doreen was not so sure. (This blog entry focuses on Judy’s experience with Doreen on Sunday and Monday morning.)

On Sunday Judy drove from Lafayette to see Doreen and help her pack. She arrived a little while before supper and found Doreen alert and visiting with fellow residents. Doreen was concerned about getting food for Judy and asked the staff to order a tray. Although the food was less than special, it was good to share the meal, and nice to see Doreen interested in taking care of other people’s needs. Doreen did well with feeding herself much of the time, although her movements were somewhat spastic and jerky. She was pleased that she didn’t spill anything! The splint on her right hand (from the fall and break from a couple of weeks ago) was largely responsible for the awkwardness.

Judy had not seen her mother for two weeks, and the change was remarkable! She moved around much more accurately and comfortably, she was talking well and sitting a bit more calmly, and she seemed to be much closer to the old Doreen. But she still has a long way to go!

Judy packed things and helped Doreen with crossword puzzles. She did very well with medium-level puzzles and wanted to keep working on them. She also asked to look at greeting cards as they were taken off the wall.

When Judy first called to say that she was coming, Doreen asked some questions about the move to the Rehab Hospital. She had talked with some former residents who said that they had been at the rehab hospital and that the staff make the residents work really hard. So Doreen asked if they would make her go to the bathroom alone and get herself in and out of bed alone. She was worried that she would be expected to do things she didn’t feel she was capable of doing. That nervousness was also an issue when she asked if she would get any help with eating. It seems that she doesn’t remember much of anything from her earlier stay at the Rehab Hospital, except maybe that she wasn’t ready to be there and felt pushed beyond her limits.

On Monday morning, Judy and Carl arrived at Covington Manor to get ready for the move. After packing up last-minute items, having an exit interview with someone from social services, getting discharge papers from the nurses, and taking one more trip to the “lost clothing room” (where we found none of her missing items), Doreen and Carl were picked up by the Rehab Hospital van, and Judy drove behind. We arrived at the hospital at the same time as Linda, who was coming from Illinois. Items were stored in drawers and the admissions and nursing staff asked questions. Then it was time for lunch and a very different dining room. Then the baton was passed to Linda.

November 1 update

November 1
by Judy, Karen, & Linda

DOREEN’S RECENT “ADVENTURE”
On Monday, October 27, Judy got a call from Covington Manor that Mom had fallen out of her wheelchair. The report was that she hit her head and had a bump on her arm. They were taking her to the ER at Lutheran Hospital to be checked out, since a bump on the head was not something to ignore following 4 brain surgeries.

Judy headed to Ft. Wayne, picked up Dad in North Manchester, and the two of them traveled on to Covington Manor. When they arrived, they noticed that she had a splint on her arm. There was a bruise on her left temple, but the more significant outcome of the fall was that she caught herself with her right hand and broke a bone—the thumb bone closest to the wrist. The splint goes all the way up to her elbow, so it is rather awkward. But neither the head nor the arm was causing her a significant amount of pain.

The story of the fall is that Mom wanted to watch TV, but she dropped the list of channels. She bent over in her wheelchair to pick it up off the floor, and she fell out, hitting her head against the open bathroom door and catching herself with her hand. Like the last time she fell, she said, “I did a dumb thing.” Her roommate was gone when she fell, and there were no staff members in the room, so she scooted on the floor on her back up to the door to let someone know she needed help. Her chair alarm was going off, too, so she did get help. The fact that she could respond that quickly to ask for help is a very good sign!

Mom saw an orthopedic doctor on Wednesday and was told she will have to wear the splint for several weeks while the bone heals. We are pleased that it is a splint rather than a cast. It is removable for showering, etc. It makes it difficult to feed herself, but they have made special utensils available to her and she is able to feed herself.

During the rest of that day (Monday), much time was spent with crossword puzzles. We had hoped that therapists and activity staff would do puzzles with Mom regularly since we brought up that activity at the last Care Plan conference, but that has happened only twice. On Monday, Judy and Mom (with some contributions from Dad) completed 3—one easy, one medium, and one hard. Mom is still having difficulties with double vision, so all of her contributions to the puzzle completion were done verbally, but she is still capable of “seeing” the puzzles in her mind!

Monday evening Judy and Dad stayed until Mom got in bed. She was given two Tylenol PM, so she should have slept well that night, and we hope that the awkward splint was not too annoying. She would like to always have someone there when she goes to sleep. The family wishes we could fulfill that request.

NEXT STEP: TIMBERCREST?
On Tuesday morning, Judy joined 5 members of the Timbercrest staff/administration to discuss their current thinking regarding admitting Mom and to talk about Dad’s living situation. Karen and Linda joined the meeting by telephone conference call. Although we were hoping for a final decision, Timbercrest was not ready for that yet, but they did say are willing to admit Mom—just not quite yet. They generally do not admit residents directly to health care, but their census there is down right now. However, they have a few long-term residents who may need the open beds because they are facing health care issues. They said that they will be in touch with us in two weeks, if not before. And they still did not guarantee that we would know for sure in two weeks.

There was also discussion about Dad. The family reported that they think he is doing very well there and that his functioning has improved along with his sense of well-being since he has been a resident. Timbercrest is ready to admit him as a permanent resident, but we will not take that step until it is sure that Mom can join him at Timbercrest.

We are all hopeful that we are getting closer to finding a permanent, shared home for Mom and Dad. The support and positive thoughts sent that direction are very much appreciated!

Family Fun Time (with video!)

It's been a long time since we posted an update: sorry for the delay. Karen, Linda and Judy are all back to work and don't see Mom and Dad very often. Plus, their situations have stabilized somewhat so there are fewer changes to report. However, this makes for a L-O-N-G entry this time.
by Linda, Judy, Karen

DOREEN’S FIRST FIELD TRIPS – OCT. 10 & 12
Last weekend was homecoming weekend for Manchester College and much of the family was able to gather in North Manchester. Karen, Clay and Cameron drove in from Kansas. Amanda and Aaron flew in from New York. Linda and Lee drove in from Elgin and picked up Parker in Chicago on their way. Judy and Dick drove in from Lafayette. Daniel is living in North Manchester as a student at the college. (Unfortunately, Kelsey, living in New Jersey, was not able to take time off from her new job and Stephen and Cosmo were not able to join us from California.)

For the first time since her brain hemorrhage, Mom got to go on a field trip! On Friday afternoon Karen and Clay took her from Ft. Wayne to North Manchester and she was able to see Carl’s apartment at Timbercrest Retirement Community for the first time. She enjoyed being there and immediately (within a few minutes) asked to sit in her recliner that had been brought from home, falling asleep within minutes (or so we thought: see video at end of post). Dad, Mom, Karen, and Clay had supper in a Timbercrest dining room, and then joined the rest of the family at a concert at Manchester College. The MC choir and band were joined by alumni. The choir included Daniel—a current choir member, Amanda—a 2003 alum, and Judy—a 1975 alum. It was a fun experience and Dad loved being able to show off his "date" to the many, many friends who greeted Mom.

She enjoyed the concert, but got restless pretty quickly. She is dealing with a sort of “restless body syndrome.” She often “rocks” back and forth in the wheelchair and/or asks to be walked around. By the end of the evening, she was tired, but felt good about the visit and wished she didn’t have to go back to the rehab center. On the way back to Covington Manor with Clay and Judy, she asked Judy to work on a crossword puzzle with her. She said that would help her relax, but she wanted to be left with a challenging clue so she would have something to think about as she went to sleep! For the entire 40 minute drive, Judy would read a clue and indicate how many letters were in the answer. It was amazing how many times mom would know the answer almost immediately. (She would often beat me to the answer: Clay)

On Sunday, Judy and Karen picked up Mom early so that she could be in North Manchester in time for church. She sat in her wheelchair in the back because she needed to move her chair back and forth or be walked around, but she appreciated the sermon and was again greeted by a long line of friendly and supportive people. After leaving church we went to Timbercrest for lunch. 13 family members and the five members of the Borgmann family (Kurt is pastor at the Manchester church and the son of Egon, an exchange student who lived with the Myers family in the 1950s) shared lunch, fellowship, and stories in Dad’s apartment and the lounge on Dad’s wing. Mom could sit in her recliner, watch TV, laugh at grandchildren, or sleep. We just “hung out,” and it felt good. Mom did very well and hopes to be with her family more often, but it was very difficult for her to go back to Covington to be alone again.

MOM’S “CONDITION”
Mom is having some challenges keeping her spirits up. She says she gets lonely at Covington. She also has begun to realize that she will not be able to do all the things she used to do. She told Karen, “I miss my life – I really loved my life!” It will come as no surprise to anyone who knows her that she feels like she needs to plan something. And she misses Elgin. While we are sad that she feels sad, this is a step forward. Even a few weeks ago, she was not truly aware enough of the situation to be sad. This is a great indication that her brain is healing!

On Friday afternoon (Oct. 10), Karen, Clay, and Judy attended a Care Plan meeting at Covington Manor for Mom. Some helpful information was shared, but the meeting was also rather frustrating for us, because the information we receive can be inconsistent. While her swallow study came back with the “all clear,” she is still having some trouble with occasional gagging. She is eating a regular diet but is quite tired of the limited selection (especially because she does not eat red meat and often ends up with a micro-waved and rubbery piece of chicken).

As those of you who facilitate Carl’s visits with her know, she often asks for fast food as a treat. She will then eat with gusto and enthusiasm – quite entertaining to watch. She will now and then announce she is done in the middle of her meal and then suddenly attack her meal again with verve. They have no good explanation for any of this.

During the Care Plan meeting, the staff reported what they called “impulsive” actions in her behavior. While she is doing very well with moving herself in the wheelchair with her feet, she does not steer accurately nor look carefully to be sure she will not run over something or someone. Earlier in the week, when she had been left by herself in the bathroom, she got impatient and decided to stand up on her own. Unfortunately, she fell and hit her head. Another report was that some aspects of her behavior are inconsistent—she is sometimes eager for working during therapy and other times wants to slack off. These concerns seem to hinge on her inability to consider consequences of her actions. As a result of the damage to her brain, she exists so much in the moment.

Concerns that the family has are: 1) this rather “negative” assessment of Mom’s behavior, 2) the lack of understanding of brain injury this seems to show, and 3) inconsistency and a seeming lack of coordination in the treatment at Covington Manor. In addition to the situations we described above, at the Care Plan meeting, the staff said that the PEG tube was no longer being used for feeding. However, that evening, a nurse came in the room with a bag of the “food” for administering overnight. We questioned her, and she looked at the chart and said that there was no order to stop the feeding. Apparently she was being fed through the PEG tube every night. We brought this inconsistency to the attention of the administration. Since then they have suspended the feeding and we have declined any further use of the tube. We wonder why and how often there is miscommunication.

THE FUTURE?
Considering our concerns, we are anxious to move Mom into a situation that is more supportive and with which we feel more confident about the level of care. Therefore, on Friday, Oct. 10, Karen met with administrators at Timbercrest to make the formal request of moving Mom there. She will need skilled nursing care and rehabilitation, so it will not work to have Mom and Dad in the same room yet, but it will be great to have them in the same community. We were told that there are some openings in the healthcare unit there and that they would evaluate the situation to determine whether Mom can make the move. The Director of Nursing visited Covington Manor on Thursday to review and evaluate Mom’s condition and needs. The administrative staff will meet on Monday to discuss what she found.

We should hear by the beginning of this week whether Mom may move to Timbercrest. It would be wonderful for Mom and Dad. He would be able to walk down the hallway to visit her! We are counting on everyone to send your thoughts, prayers, suggestions, and support in that direction.


The video is of Carl reading mom a letter he had received from Howard Royer. Near the end, even though it appears that she is sleeping, she asks in a shallow voice: "Who wrote that?" Listen all the way to the end!)

Weekly Update

September 20, 2008
by Judy

On Saturday Judy, Daniel, and Carl visited Doreen. They discovered that Doreen had a new hairdo. Doreen said that she had her hair cut a couple of weeks ago, but Carl said Saturday was the first time he saw the style. Which one was accurate? Only her hairdresser knows for sure…

Doreen's intestinal challenges continued, but the elevated temperature was gone. She did have several tests on Wednesday. The nurses said that the only thing that was found was a urinary tract infection (UTI). They explained that UTIs in the elderly can have lots of other impacts, many of which Doreen showed. In addition, one nurse explained that the move away from the tube-feeding also could result in some of the intestinal discomfort. So hopefully things will improve as Doreen's body adjusts!

Because some of the therapy sessions were cancelled during the week due to Doreen's exhaustion and discomfort, she had some sessions on Saturday. Some happened before the family arrived Saturday, and the report was that she had worked hard. Later in the afternoon, the family watched as she rode a bike. It is a machine that can measure how much work is being done by each leg. The challenge is for the rider to make the bars on the display even. Doreen rode for 20 minutes. The substitute therapist was surprised that it looked like the left leg was stronger than the right. She thought that Doreen had a stroke that had affected the left side. Judy explained that the event was a brain hemorrhage rather than a stroke, and that Doreen had alternated between the right side and the left side being stronger from one time to another.

Then Doreen sat in her wheelchair, put her hands on her knees, leaned forward, and tried to lift a leg to move the foot in and out a few inches. It was hard work, and she tried to use her hand to help now and then, but there is definite progress occurring!

The discussion with the therapist seemed to lead Doreen to need to talk again about what had happened to her. So she and Judy discussed the brain hemorrhage again. We have all learned a lot about the issues, but this stretches the understanding of all of us!

Saturday's food request was Wendy's, so Daniel and Judy brought in food, and the four ate together in Doreen's room. She ate well, but not much, because she was dealing with some stomach cramps and didn't want to overdo it. At supper, Carl sat with her and helped her eat. The appetite stimulant has been discontinued, though, because the problem doesn't seem to be appetite any more. Unfortunately, some gagging has reoccurred, but hopefully that is just temporary.

(FYI: the Myers-Bowman family will be traveling to N. Manchester for MC Homecoming festivities on October 10-12. We'd love the opportunity to see friends during the day on Saturday. We're hoping to get there in time to hear Daniel and the A Capella Choir on Friday night. We'll also be spending time with mom in Ft. Wayne and trying to visit my new grand niece!- Clay)

Weekly Update

Sept. 17 Update
by Judy

None of us has been to see Dad or Mom in person for a few days, but we have gotten some reports to post here. The reports come from staff at Covington Manor and from Dad by phone.

First, an exciting advancement occurred on Monday. Mom was taken to St. Joseph hospital for a swallow study. That involves sensors and X-rays to make sure things are going where they are supposed to go when she swallows. The study gave her a high grade—she is swallowing fine. So…she no longer needs thickening in everything she drinks! She can have regular thin tea, regular milk, water, and all other sorts of ordinary drinks. Hurray! She has been very patient with nectar-thick liquids, but she was really ready to move on!

A call from Covington Manor this morning indicated that Mom is eating well as long as she gets help. They stopped feeding her through the feeding tube last week, because she had been saying that she wasn’t hungry at mealtime. Apparently, that decision was a good one. She is eating better. One nurse said she fed Mom all weekend and that she ate virtually her entire meals as long as she had assistance with her meals. The Center wants to monitor Mom’s weight for another week and make sure she is stabilized before they remove the tube, but we may be getting close to the time that we can get rid of that thing!

Dad’s report from today was that Mom was weak and had extra problems with tremors and weakness in her arms, so more tests were done to identify the source of the problems. We will pass the results on when we know them.

Dad is doing well at Timbercrest, but he really would rather be in the same place as Mom. He has enjoyed movies and other programs, and he reports that it is a very supportive and family-oriented place. He has help with his medications and his eyedrops and gets lots of attention. If only we could find a place for both Mom and Dad to be under the same roof! Both of them have expressed that they have been lonely. The visits help, but we all want more for them. Thanks for the cards and messages. That all helps!

Weekend Update

Saturday, Sept. 6
By Doreen (as told to Judy)

Doreen asked Judy to contact Clay to update the blog. (Note that she has not seen the blog much, but she knows about it and wants to keep it updated. We are looking forward to the day that she can write her own updates!) Judy asked what she thought should be reported on the blog, and below is what Doreen listed:

She walked about 100 feet using the walker on Friday. She also took about 60 steps through the parallel bars with minimal support. She wanted to tell you all that the therapist said that she was making exercises look easy that other people in her situation find really difficult.

She has used the T-Stim (an electronic stimulation tool to stimulate particular muscles with electrodes) a couple of times to improve her swallowing. She thought it was helping.
She is eating well, but she is getting a little tired of some of the food!

Judy’s report:
Mom is clearly getting stronger. The transfers from bed to wheelchair and back are smoother all the time. She requires only minimal lifting and assistance (depending on how tired she is at the moment). We took some walks in the hall, and she “walked” the wheelchair part of the time, but she does have to work extra-hard to get her left leg to do an equal amount of pushing.

On Saturday, Mom’s eyes were closed much of the time again, and she seemed quite tired. It may be that she needed to catch up from, working hard over the course of the week, or maybe she had not slept well the night before. She did express some frustration with being isolated from everyone, because she doesn’t have a phone. She does have a phone in the room, but she can’t reach it easily and would have difficulty with dialing and holding the receiver to her ear. Judy called some family members on her cell phone and let Doreen talk for a while. It helps for her to feel connected. The cards help with that, too.

Again, thank you for your continuing support. It makes a difference for all of us as we struggle through the uncertainty of the future.

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Weekend Update

Tuesday, September 2, 2008
by Clay

Karen, Cameron, and I returned late last night from a long weekend in Indiana. Our primary activity was to drop Daniel off at Manchester College for the start of his first year. We also spent lots of time with Carl and Doreen. Karen and her sisters are working on getting a much more thorough update, but I thought I'd give you a few observations, for a change.

The photo to the right really tells the whole story. It was taken after a walk outside with Carl and Daniel. Realizing that the sun was very bright, the only sunglasses available were ones that I use for running and biking. Doesn't Doreen look spiffy? At the time I took the photo, she was very tired from the walk: foot rests were forgotten and she needed to either pull herself along or lift her legs. I'm sure her abs and quads were sore the next day. She said that she really enjoyed being outside for a change and appreciated being able to just sit comfortably.

The other highlight (two really) was Doreen's appetite. I'm sure Karen will have a much more detailed account, but on Saturday, we brought in food from Taco Bell and ate with Doreen in a conference room. She exhibited a tremendous zeal in eating her chicken taco salad, chips, and cinnamon crisps. On Sunday, the family ordered Chinese food and ate together in a room adjoining the one from the previous day. The photo here is Daniel helping mom with balancing her food on the spork (a nearly useless utensil when eating a salad).



Talk about zeal!!! Doreen seemed to attack the noodles and other food with abandon (exhibiting little of her former decorum). According to Karen, her sisters, and Carl, they've not seen Doreen eat so much food since the hemorrhage.

Karen and I won't be returning to Indiana until Manchester's homecoming on October 11th. As Doreen continues her progress, your cards and visits will help fill in the gaps and keep Doreen focused and engaged in her recovery. Thanks for all the kind words and thoughts.