4/6/06 8:15 AM
You may want to skip this; it is intentionally graphic. I am writing this because I think it would have helped me when we were going through that last few days and hours of my mother's life to have known what others had experienced and what to expect.
My mother had been difficult to get along with for years. It now turns out that a lot of the problems were caused by the many pain and psychiatric drugs she was taking. Several different doctors who were not talking to each other were all prescribing medicine/drugs for her. My brother and his wife (to whom I owe a debt of gratitude I can never hope to repay for the care they gave our mother the last few years) finally got her into a geriatric psychiatric hospital, Senior Bridges. After spending almost two weeks there (a place she referred to as "prison") she came out with her medications cut in half and was a new person. I wish people wouldn't be so squeamish about the title and just get the needed help for their loved ones, whatever it may be.
Unfortunately, it appears that the ups and downs of her life, the drugs, the pain, and G-d knows what else was just too much. The best description of her condition I have heard is simply "failure to thrive". Nothing could be found to be medically wrong with her... her body was just shutting down and dying. Hospice was actually unsure of whether or not to take Mom because they couldn't put down a diagnosis. I was originally upset with my brother... how could he just sign a death warrant like that? Ultimately, though, they did take her and managed her care the last couple of weeks of her life. Was it the right decision? Could we have extended her life? I don't know.... I can't say it was right or wrong... but that is irrelevant now.
I arrived on Friday morning and told me brother that maybe we could get Mom out to the mall as I could use a pair of pants. He said that would be great, but it is really hard to get her out. We arrived and I spoke to Mom for just a few minutes. It turns out that was her last conversation in this world. A few times she tried to express a thought, but after a couple of words came out... it was gone. Someone brought a tiny little puppy by. Mom loved dogs and she petted it; the puppy was practically jumping out of the basket to get to her. (Later one of the aids would remind us of that... and add that the puppy had been really shy before that.) She closed her eyes and went to sleep. After a few hours my brother remarked that with this good nap, she might be really rested and be able to get around a little more the next day. My sister-in-law looked at him and said, "You're swimming in that river again; Duh Nile." That became a catch phrase for us all over the next few days.
"Maybe I better call our sister", my brother decided later Friday night. I had mixed feelings about that. I knew he should, but my sister and I had not spoken in years and I was afraid of confrontation. He called her, she said she would be up late Saturday afternoon. She walked in, and the most amazing thing occurred... we were both so focused on Mom that we rose above ourselves. I am pretty sure Mom hung on as long as she did to enjoy her children all together. She was achieving something with her dying that she had not been able to have for years. I am sorry, Mom... we thought we had such good reasons for our difference. And the truth is, we did and we do; but they were not good enough. I wish we could have given that to Mom before she died, I am thankful we were able to give it to her now.
Sunday, Monday, and most of Tuesday continued pretty much status quo. It became apparent to us that Mom was not going to awaken in this world. We got used to the idea slowly... started talking about it. We never talked about that in front of her. Even though she never showed the slightest response, we knew she could hear and didn't want to cause her any undue distress. We tried shifting her to a more comfortable position a couple of times. That was almost always a mistake; we were "treated" to pitiful groans of pain. We realized we were trying to ease our discomfort, not Mom's; so we stopped all adjustments to her position except absolutely required -- either to help her retain her pain medication under her tongue or to change her. The bed sores were also getting worse; her skin was paper thin.
Mom was mostly breathing though her mouth. The one thing we could do that seemed to give her some comfort was give her a little liquid on a sponge for her to suck on. That was really the only reaction we got during those last days. We joked with her, "Mom! Give it back so we can give you more." We took turns, and I am sure Mom appreciated her children working together and getting along.
Here is a terrible admission... we were getting bored a lot of the time. I have heard that battle is like that; long periods of boredom punctuated with moments of terror. That pretty much describes those three days. We put on Moms's favorite channel, the cooking channel. Now I know name about Rachael Ray and sugar sculpture contests and other things I don't care about. We took Mom's pulse and blood pressure, we checked her temperature. We read the little blue pamphlet that hospice had given us. We had several false alarms. Her pulse went up to 130 and respirations to 27; then back down to 100 and 20. Her fever went up to 103; then back down to normal.
And a worse admission... we each secretly wondered why she was hanging on so long. We "gave her permission to leave", we asked forgiveness and gave forgiveness. But every time there was a hesitation in her breathing, we felt terror and panic... and guilt. How could we be trying to hasten her leaving? How dare we feel bored, with our mother there dying? I am sure these feelings are normal; and G-d forgive me for feeling them.
About 4:00PM on Tuesday afternoon, Mom started making a horrible gurgling sound. I had heard of "death rattle", and I looked it up. Amazingly, the residence had wireless internet, I had been able to do some work, email, and blogging right from her bedside. The information I found said that it was due to phlegm build up in the throat and there was really nothing to do for it. Any treatment would only be for the caregivers comfort, not the patient. We called hospice and confirmed the information, so we opted to do nothing. Hospice also confirmed that this usually signaled that the end was near, minutes to hours -- "I've never seen anyone go more than six hours." they told us. Mom gets the record; seven hours or so.
The gurgling was so bad we really couldn't understand how she was still able to breathe. We knew we couldn't do anything and that she was in her last hours. We felt helpless and Mom sounded so pitiful. Her mouth was filling with fluid and it was hard to get her pain medication to stay in. They told us to try swabbing her mouth and then giving her the medicine in four doses, five minutes apart. We asked if we should give her the medicine, but because morphine (and oxycodone) are narcotics the aids couldn't give it to us to administer. Amazingly -- and I plan to write a separate entry about this -- the aids said they were happy to spend as much time helping Mom as we needed. They loved her. Many aids came early, stayed late, or even stopped by on their day off to check on Mom. Most of them kissed Mom after administering her medicine. That in itself was a tremendous comfort -- to see how much they honestly cared for her and were grieving right along with us.
I don't remember the exact timing, but at some point we called Mom's brother and a close friend of hers. We put the phone to her ear so they could say their good-byes. We wanted to give Mom and closure we could. We put on music for her; sometimes 50s Rock & Roll, sometimes country, sometimes classical, sometimes show tunes. It was a bit anachronistic -- Mom laying on the bed close to death and my computer (thanks to internet radio) belting out show tunes, Chuck Berry, or Johnny Cash. Oh well...
My mother had lit candles when each of her children had suffered different crises in their lives. My brother suggested we do the same for her. He and I went to the store to get scented candles. The three of us lit them; one each. We joked with each other... "I get to light first." "Mom likes mine best." "No I want the cucumber melon one!" We wanted to make sure Mom knew it was us.
About 11:00PM things sounded very, very bad. My sister and I sat on opposite sides of Mom and held her hand and stroked her arm. Her hands, which had been almost colorless, became mottled with red. Her body was becoming colder. We sat and held her for almost an hour. Then we relaxed. Another crisis passed. I showed her some funny google videos. We were in the middle of "Matrix Pong" when we both turned toward Mom with a start. "Something changed", my sister said at 12:50AM. We took our position at her sides. The breathing changed to gasps. One eye opened and was not glassy for the first time since Friday afternoon. She could see the candles. Then at 12:58AM the breathing stopped... but her mouth kept opening and closing for almost another two minutes.
Mom was dead.
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