Sad News

My upbeat, positive, hopeful post from the 22nd was premature.

My beloved Mother passed away Saturday, September 30, 2006, at 11:42 AM EST. I have lost my best friend and I am devastated.

Sunday the 24th, I went back to church for the first time in years, and met the new interim pastor.

Because she was having so much trouble with food, it was suggested we try the feeding tube. The doctor also wanted to drain fluid off of her right lung, requiring a Jackson Pratt or JP tube in her chest. On Monday, she had the procedures. Pastor came in to visit with Mother and pray over her before the procedure. The surgery went very well. She was out of surgery in half the time, placement was good, and she was out of recovery quickly. She had some pain, of course, but was otherwise fine. They drained a quart of fluid off her lung in surgery and more kept coming out. All vitals good, lungs clearing up. But she was not allowed anything by mouth or feeding tube until the next day, only swabs to rehydrate her mouth. The last meal she'd eaten and kept down was Sunday's breakfast. After Thursday's good eating, she failed to keep down anything Friday or Saturday or the rest of Sunday. She couldn't eat Monday because of the surgery. And she was already bone thin.

Tuesday was harder because of the pain. The doctor said to expect it to be worse the second day. She was allowed ice chips.

Wednesday, she was finally allowed clear liquids by mouth. She ate broth, jello, grape juice and water, kept it all down, and was horribly crabby, lashing out at everyone, including me. She was even snarky with the Pastor when he arrived! Later that evening I noticed she seemed confused. She was convinced we were in Southern Ohio (where she grew up), not Northern Ohio (where she's lived the past 48 years). She also was very adamant about going home RIGHT NOW and very upset with me because I "had to have it my way all the time" and was "refusing to take her home". This troubled me, because Dad had the same confusion, agitation, and demands to go home the night before he died (this June). Mother's blood pressure was also a little low (70s-80s) and her urine output was down a bit. They were treating her for it.

Thursday, she was no longer crabby, but weaker. She was having a lot of pain in her stomach that morphine wasn't diminishing anymore. She ate... reluctantly. Most of it stayed down. They determined the tube was ready to go, and began feedings. She was still draining quite a bit from the JP. Her urine output and BP were still questionable, but they were hopeful. I stayed for quite awhile and worked on knitting a sock while she dozed off and on. The doctor was pretty positive that she could turn around and possibly go home the following week, but may need to recuperate in a nursing home for a couple of weeks. I was worried about her weakeness and confusion, but trusted the doctor's words.

I went home and did a lot more praying.

Friday morning, I went back to the hospital. I don't know what I expected to find; we'd obviously survived the night because no phone calls interrupted my sleep. She was even weaker. Having difficulty breathing. She said to me "help me! I can't breathe like this much longer!" They tried a low dose of Valium to relax her but it didn't work. She was refusing food. Her urine output was really low, her BP hadn't come up, she was more confused, and she was beginning to slur her speech. She did manage to sit up in the chair for a bit. At first she wasn't sure she could do it and almost decided not to. I remember thinking "It may be the last time you sit in a chair, you might as well try". Then I shook myself to reject that thought. Reverted to "she'll pull through, she's coming back home next week".

As the day wore on, she began to decline. She eventually stopped communicating with me altogether. I was very glad that something had moved me to tell her the last few things I needed to tell her while she was able to understand and communicate back to me. Just before she lost the ability to communicate (by sunset), the nurses told me if we wanted to continue to try to save her, she'd have to move into ICU. I said "but I won't be able to sit with her!" because they only allow brief visits (remembered from Dad's short stay in ICU this summer). They insisted it was important if I wanted her to live. They needed to take care of her. I began to sob. I was so upset. Mother was still present and my sobbing upset her. She looked at me with such pain in her eyes and feebly said "Oh, honey..."

The pastor came when I called and arrived before she went to ICU. He prayed over Mother and they took her away. He sat with me in the waiting room for a long time talking with me about God and Heaven and God's Will and death and my future and was very reassuring. The ICU nurse came out to tell me we could go in--without restrictions on time. They set up chairs for us and we sat with her. I thought she was sleeping so I let her rest while I knit my sock. The pastor went on home. Mother's vitals were otherwise OK except for the BP. Oxygen at 100% with just a nasal tube, heart rate a little fast but steady and strong, acceptable respiration rate. The only worries were her kidneys, her BP, and her elevated temperature (100). They had her on five different IV drips addressing possible infections as well as the kidneys and BP. After a while, I realized that she wasn't responding to my voice anymore, not even with grunts, and was staring off into space without blinking. I stopped knitting and moved to her other side so I could hold her hand and watch the monitors.

Then it began.

Her BP started to fluctuate wildly. It would be 70/44, then 50/30, then 33/23... then 90/45. The highest it went was 126/70. Every time it dropped, I gave her a pep talk. Every time it rose, I cheered her on. Her heart rate began to come down one beat at a time, slowly easing from 130 to 120 to 110... 109... 108... hovering and fluctuating slightly. Her oxygen level dropped to 98% and held for awhile. Then it dropped to 95%. Then 90%. They added a rebreather mask to the oxygen combination. Her oxygen went back up. For awhile.

Then it began to drop again. Her BP was by now unable to stay above 50/30. Her heart had slowed to 105. Her respirations slowed from 22 to 11. By sunrise, the nurse said it was nearly time to intubate her, if I wanted to do that. I had to have the DNR discussion. Mother had a Living Will and wanted all measures taken to preserve her life, because life is precious. But she wasn't expecting this. They told me that intubating could cause tearing and bleeding in her throat/lungs. I asked the nurse, "does she have a chance of bouncing back from this?" They said "a very slight chance". I said "If she did, would she go back to how she was?" They said "No. She will never be the same again. She'll be just like this. Maybe slightly better". I asked if I'd just have to pull the plug later and they said yes. I asked for a moment to think.

I looked my Mother straight in the eyes and explained it to her. Whether she understood or not, I don't know. Her eyes weren't focusing. Once in a great while they would shift ever so slightly but mostly they just stared. She "wasn't tracking". She wasn't responding to stimuli. I suspect now that she was already pretty much gone. Comatose, or in a persistent vegetative state. I was told that when the kidneys shut down, the toxins are released into the blood stream, and they can cause... hydrocephalus or something like that. They attack the brain, cause confusion, disorientation... they didn't say it but it probably also causes brain damage or death. With a compromised liver and low BP, she didn't have a chance. Besides, she had terminal incurable advanced end stage esophageal cancer with 95% of the liver taken over by masses. Her liver took up her entire right side. (If she hadn't always been poochy in her later years, we might have noticed it sooner.) I didn't think she'd want to live like that, but I wanted her permission. I asked her what to do. Then I waited. I looked into her eyes searching for an answer. I got the impression that she was beyond miserable, and that she didn't want it prolonged. I, of course, would have done anything to keep her here; but she, or her spirit, communicated to me to let her go if it came to that.

They kept her comfortable and kept all the IV drips and oxygen going. They warned me that sometimes "they" will hover like this for days even with a super low BP and oxygen rate. I kept talking to her as if she could hear and understand me. I reassured her. Encouraged her to try to stay until my sister arrived from the next state over. She tried to stay. A couple of times she began to slide, but I reminded her about my sister and she "recovered" briefly. I told her that I hoped she'd stay for my sister's sake, I hoped she'd fool them all and turn around and pull through, but that it was up to her, and if she felt she didn't want to keep going, I'd understand, I'd be all right, and she had my permission to go.

Around 11:00 AM, the descent began to pick up steady speed. One by one, her vitals began dropping off. Her oxygen dropped to 75%. Her heart rate was 90. She was barely breathing. I was still holding her hand tightly. At 11:30, the nurse came in. I was watching Mother carefully, staring into her eyes, telling her not to be afraid, that God loves her even more than I do, and that Dad is waiting for her to take her on a wonderful trip with him. The nurse said something. I looked away for a moment. The heart rate was 30 and dropping. The beats were growing farther and farther apart. I looked back. I realized she had just stopped breathing. No death rattle, no great huge sigh, just... stopped.

The nurse put her stethoscope to Mother's chest. I watched the heart rate on the monitor go from 30 to 20 to 7 to... 0. She flat-lined. I moaned. It beat a few more times. I cheered inside. It flatlined again. Twice more it did this before it stopped. She was pronounced at 11:42 AM.

My sister arrived at 4:30 PM.

The funeral is Tuesday. After that, I have the arduous process of figuring out who I am without my Mother, who I want to become, and reinventing myself for the rest of my new life.

Personally, I'd rather have the old one back. Mother and I fought like cats and dogs, but we also loved each other profoundly. Our bond was different from that with her other daughter because Mother and I talked daily. I lived at home until age 35 (I know...) I've only been "on my own" for 9 years. Even then, I only lived a half hour away and visited every week. I moved back home after Dad died and Mother was diagnosed. She is part of my daily life and rituals. Without her, life is completely different.

Somebody invent me a time machine, and throw in the cure for incurable cancer while you're at it.

As for the sock, I got as far as turning the heel and beginning the rest of the sock before she died. Haven't knit a stitch since.

posted by Jeanne @ 2:41 AM