In pieces…

Part I: The Facts

Friday 1/30

Decided to discontinue treatment. Tired. Sore. Using heating pads on lower abdomen and sternum. Told Emilin and Brooke. Said possible time frame is “a couple of weeks to a couple of months.” Perhaps called Whitney to set an appointment to get to know each other. Said that she can’t even proofread anymore.

Saturday 1/31

Told Paul and Hope. Had what seemed like chemo brain. Talked about wanting to make it to Hannah’s birthday. Discussed possible clothes for her casket (perhaps buying a pink cabled cashmere sweater and white winter pants), plans for the service. Wanted to be comfortable (55 degrees, no wig, etc.) and look like herself.

Sunday 2/1

??

Monday 2/2

Spoke with Hospice, did intake. Signed a DNR, was lucid enough to do so.

Tuesday 2/3

Much weaker, more foggy but still able to have conversations. Spoke with Emilin on the phone, and had more difficulty communicating that way. Needed to rest on the way to the bathroom from the family room.

Wednesday 2/4

Using wheelchair and commode seat over the toilet. Emilin and Brooke arrived. Was instructed to wake Dad up for help going to the bathroom. Got up on her own anyway and fell. Bruised her right buttock quite badly, got large sore/bruise on her shin. Dad had a lot of trouble getting her up.

Thursday 2/5

Met with Whitney. Saw Dr. L for the last time. Created schedule for visitors and Hospice help.

Friday 2/6

Hospice social worker, home health aid, and nurse all came over. Paul and Hope arrived. Hospice worker brought over a strap/belt to use to get Mom up when she falls. Lynn and Dana came in the afternoon to visit for the day. Carol, our former neighbor, arrived after work and stayed until the late evening.

Saturday 2/7

Got out of bed by herself and fell on her way back to the bed. Gashed chin, couldn’t get up. Emilin and Dad were going back to help her with nighttime meds (had forgotten) and Dad heard her fall as they walked down the hall. Emilin went back to get Paul and the strap/belt from Hospice.

Sunday 2/8

Couldn’t walk from wheelchair to toilet, couch to wheelchair, etc. Could stand when stood up, but needed help up. Decided to get hospital bed. Mike and Laurie visited. Art came by for a couple of hours. Paul, Hope, Hannah, Emilin, and Brooke all went to Whitney's church for the service and to talk to Whitney.

Monday 2/9

First day that she requested pain meds. Went from offering them prophylactically twice a day to three times a day, still only one-eighth of what she could be getting. Jennifer put a catheter in. Em and Dad couldn't decide about the catheter until Jennifer discovered that her bladder was distended and therefore neurogenic. Decided the catheter was best. She ate for the last time—a few strawberry slices that Ginny, our neighbor, brought over. Very agitated for part of the day. Somewhat confused, but seemed to be only day with any confusion.

When Dad was gone, she wanted to get up, saying she had to go somewhere. At first wanted Emilin's help, but Em wouldn't help her get up without a reason. Said that she had to "get out of this car," "go upstairs," and "go over there to get to Berlin." Became so angry with Emilin that she held onto Em's arms and tried to shake them. When Dad returned, he reminded her of the catheter and offered to take her on a wheelchair ride around the house. She agreed, and after a few minutes was ready to return to bed.

Tuesday 2/10

Brooke arrived this morning. Around 6:45am, Dad and Emilin decided that they needed another person in the house to help with Mom and Hannah, who would be at the house needing supervision for a few hours that afternoon. Brooke had just finished making arrangements to come when Emilin called her at 6:55am to ask her to come. B arrived around 10:30. Whitney came over one last time before Mom's death.

Began having trouble sucking through a straw, and started taking fluids (juice, mostly) through a syringe, about 1 mL per swallow, 5-10 mL at a time. Gerber pear juice went over best. Took another wheelchair ride around the house, and returned to the kitchen to find friends/coworkers there to see her. Got back into bed.

Hope and Hannah arrived in the early afternoon. Hope went to work at 4pm, and Paul arrived at 6:30.

Took some chocolate sauce on a spoon that night. Language has diminished significantly, although can communicate YES and NO clearly. Still greets people and tries to hug them. Dad notes that she can "still give and receive love," and we all agree that that is a wonderful thing.

Wednesday 2/11

Hope arrived this morning. Mom is basically non-verbal at this point. Some time in the afternoon, she only stirs but does not actively respond to a neighbor's greeting. Becomes agitated at Hannah's fussing. Pills have become difficult, and Jennifer suggested grinding them into paste, mixing with a small amount of water, and administering them that way. Mom really disliked the taste, and Dad decided to switch to the liquid morphine in the Hospice "Comfort Pack" for morning meds. Late that night, around midnight, had a "conversation" with Em, who had been speaking to Brooke about something when Mom stirred. The conversation is one that had significance to Mom, and she responded to questions, nonverbally but vocally or through head shaking/nodding.

Thursday 2/12

Her body seemed to be producing a lot for the amount of nourishment and liquid that was entering it. She took the morphine in her mouth quite well, but didn't have the muscle or reflex to lick her lips or catch a drip with her mouth. Jennifer told us that "we're within a day or two," and told Dad what to do when Mom passed and what would happen when he called. We began rolling her as necessary from side to side every hour to prevent bedsores. In the late afternoon and evening, it became clear that her body was slowing down. Everyone gathered in the family room that evening to sort through pictures, and we came across a poem Paul had written for Dad's mother when she died. Paul decided to hold on to it and consider reading it at the funeral.

Friday 2/13

Died around 6:15 am this morning. Em and Dad were finishing late shift around 5:30 and went to turn Mom to her side from her back. Made a protesting noise in her throat, and Em and Dad left her with Paul and Brooke. Brooke woke Dad, Em, and Hope at 6:00 because Mom’s breathing had changed. She took two or three breaths after all six arrived.

Hospice arrived around 7:30—the same nurse she had been seeing, Jennifer. Jennifer did the death notice, and the funeral home was called. It took them a really long time to arrive, it seemed. Mom's body was lying on the hospital bed, all alone in the family room.