When my mother went back to the ER that 3rd time, Friday, December 14th, word went around, "Mrs. Jackson is back." She must have been an unusual patient for them to remember her. It had only been three weeks, but this is a huge regional hospital with an ER of over 50 treatment spaces, all usually full. Unusual and charming. Even in the worst of circumstances she tried to be her charming self, "I'm so sorry to be bothering you lovely people." They gave her an IV and ran some blood tests. It was comforting to know that she was being seen by people familiar with her medical history. After a few hours it was deemed she could be admitted because she had another (or the same) urinary tract infection. It was 3 am before she finally got settled in a hospital room. This time the 7th floor, a surgical unit. Previous admissions were to the Short Stay Unit. I don't know if it was full this time or if they knew what was coming.
The day we left the skilled nursing facility, as I wheeled my mother back down to her room to get ready to go to the hospital she said, "I'm so lonely." She had just spent an afternoon with me, my daughter and her husband. There are other ways to be lonely I learned. Knowing that, I did not want my mother to spend a night alone in the hospital. She was lonely, helpless and prone to sundowners while in the hospital. Common for the elderly in the unfamilar surroundings of a hospital, one theory concerning sundowners syndrome is that the constant daily mental processes for normal living can become overwhelming for the elderly during evening hours. They simply have too much incoming information and their restricted cognitive abilities become overloaded. The result is a period of irritability and negative thoughts. The mother had become the child, the child, her mother. I now needed to comfort and protect her.
On my first night there, she awoke several times, crying out, "Water!" Who would have heard that cry, that feeble request for the simplest of needs? She was unable to find or even use a call button. Confused and afraid of the dark, I slept with the light on for her. Worse, was watching them try to get her to swallow her pills. Because of her back pain, she was only comfortable lying nearly prone, which made swallowing impossible. Mashed in applesauce, pudding or yogurt just wasn't working for her anymore. She couldn't do it, yet they tried. Like force feeding an infant. It appeared that she was being unreasonable, uncooperative. But she just couldn't. She had pretty much stopped eating everything that last week, unable to tolerate the taste, smell or texture of food. That's an early warning sign, but one we didn't recognize, because in the past, her antibiotics and other medications made her nauseous and killed her appetite - that and institutional food. Pain can do that too. She had been in a not-eating phase before but if you saw her on Thanksgiving, you know she could still enjoy a good meal. She was literally down to skin and bones and starving herself to death. At what point did Mom's behavior and symptoms switch over to impending signs of death? Did we not recognize it because we didn't want to see it, were untrained and unknowledgeable of the process, or had the process been happening for months and we had just come to accept is as the way Mom is, sure she would "come around" again?
My sister and I alternated nights at the hospital, so she was there Monday morning when the doctor asked what we wanted to do for my mother. Many, many, many times, as I watched her die (the word deathwatch kept stomping through my head), I asked myself - did we make the right decision? What if she was hanging on so long because she really didn't want to die now and she was struggling to overcome the pain-relieving medication and starvation we had imposed on her? What if she could rally again and get back to where she was just 3 weeks ago on Thanksgiving? Were we being cruel and inhuman or compassionate and loving? Two days ago I asked my sister exactly what led us to make the DNR decision, to switch from actively trying to heal her to passively sitting by and letting her die?
In her own words, here is how we came to make the hardest decision of our lives. "It is somewhat of a blur but Dr. Weir or Heintz – I can’t remember - said mom probably wouldn’t survive a surgery to fix any additional fractures. She said mom had kidney failure, was dehydrated, urinary tract infection, myelodysplasia syndrome of some sort and pancytopenia, which she said meant she was low on all blood cells and platelets. She mentioned the cirrhosis of liver too. She asked us about the DNR and said that she would still be suffering if they did resuscitate. She said we needed to reinstitute a quality of life for her now … the pain meds … and hospice care. She asked me what I thought was going on and I said I think she might be dying based on some things she has said but doesn’t want to or isn’t ready. Something like that. She agreed and asked me why she might not want to die – if there was anything unresolved. I said I thought she was afraid of death and that she never wanted to talk about it. I also said she has always had an inferiority complex and thought she wasn’t loved but oh was she loved. Daddy was there and added that her relationship with her mother was poor.
I don’t know why I said all of that I just did. She said we were talking a quality of life issue. They could “treat” her but it wouldn’t cure anything. When her heart went into arrhythmia that day they asked us if we wanted to “treat” it but suggested it would prolong the inevitable. Daddy and I … and I guess you agreed to not treat. I asked Daddy today if he remembers any of that conversation. I was afraid perhaps I killed her prematurely and he said no that she was in pain and that they said they couldn’t do a whole lot to help her get better so we made all the right decisions. Its been bothering me … and when you said what did they say to make us stop letting her live I thought again … did I/we make the right decisions? We agreed we didn’t want her in pain … and she didn’t want to swallow any pain or other meds. She said she just wanted them all to leave her alone. I think she was ready. She had said to me something like “I don’t have anymore to give.” She was tired. I miss her."