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!)
