The Rollercoaster

The Rollercoaster; My Mother's Last Days
The woman lying in the hospital bed did not look or act like my mother. I felt like she was gone already.
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"Your mother is adorable! She's so small, and frail, like a little bird," the nurse's aide observed as she gently removed the blood pressure cuff from my mother's arm.

I smiled and fidgeted. I wanted to be nice because the young lady liked my mother and was trying to make her hospital stay as pleasant as possible. But the muscle atrophy my mother had sustained was a frightening, frustrating reminder that I was losing her. I didn't think there was anything “adorable” about it.  

As the aide prepared to visit her next patient I told her about my efforts to fatten up my mother. I had fixed my mother pancakes with lots of butter and syrup, sausage gravy, made with whole milk and lots of butter. My mother was very alert at the time, and she smiled and said she LOVED them; they were so good. Her short-term memory had deteriorated, so I was happy that she remembered enjoying my cooking, and that the memory brought a smile to her face.

Even though my mother loved my fattening cooking, she didn't eat as much as I had hoped. Some days were better than others, and I felt like I was on a roller coaster. Her physical ups and downs were challenging for us, but that wasn't all we had to deal with.

The first six years my mother was in a wheelchair after breaking her hip she did quite well. Then she began suffering recurring urinary tract infections. She was diagnosed with Mild Cognitive Impairment, a condition that falls under the Dementia umbrella. They believed that the severe UTI's, which are common among the elderly, and the strong antibiotics she'd been given to fight them, had caused brain damage resulting in confusion, memory loss, and hallucinations. She first experienced symptoms in December 2012, shortly after they put her on a potent antibiotic. She saw alligators, mischievous little boys hiding in her room, and soldiers marching in the field outside her window. The most unsettling incident was when she told a friend from church that I had suffered a heart attack and was in the hospital. I could go along with the purple crayon she saw on the wall, that wasn't there, and the beautiful balloons that she saw floating around her room, but I politely told her that the people who had informed her that I was in the hospital were mistaken. I could not let her believe that I was seriously ill.

The pattern was the same, but every time it was repeated her mind wouldn't be as sharp when she recovered as it had been before. There was an undeniable downward decline. I often felt that she was slipping away from me.

On Monday July 21st she refused to eat. She was happy I made pancakes for her, but she didn't take a single bite. She wanted to go to the hospital. It was her last scheduled week for physical therapy, and I felt bad about cancelling her appointment for that afternoon, but it had to be done. I was relieved that they admitted her to the hospital that time. Hopefully she would stay at least three days or more, then go back to the nursing home for a while. She'd receive physical therapy more often, and in the therapy gym with better equipment and more people to help her. I felt like she was finally going to get the help she needed.  

The doctors and nurses really liked my mother. They appreciated the appreciation she showed to them for taking care of her, and she was so sweet. Her regular doctor was out of town. The doctor who was covering for him spent forty-five minutes with us, discussing her medical history thoroughly. He detected a slight irregularity in her heart beat, and had the nurse listen too so she'd understand his concern, and watch my mother's heart beat closely. Before he left my mother shook his hand and thanked him for taking care of her. He mentioned the incident several times, and it always brought a smile to his face.

Early the next morning, as I was getting ready to return to the hospital, I got a call from my mother's nurse telling me that they were transferring her to ICU just to keep a closer watch on her heart. I met with a surgeon, and he explained that they were putting a catheter in her neck so she could receive medication and even blood more easily. Years earlier, before my mother broke her hip and I had to fill out the paperwork with a social worker to admit her to the nursing home for rehabilitation, I took pride in carefully reading everything I signed. Now I signed anything they stuck in front of my face.

I noticed some improvement after the procedure. He told me how well she did, and how sweet she was. He really enjoyed working with her. The nurses and aides who cared for her expressed similar sentiments. When she was able to express herself she thanked them for the care they gave her, and I did too. I have no doubt that they really liked my mother, and did the best they could to help her.

My mother was usually very cooperative, but she refused to do a swallow test. They didn't force the issue, but they were concerned about her frailty, and lack of nutrition. They wanted to surgically implant a feeding tube in her stomach. I didn't care for the idea but they convinced me that it was the best way to build up my mother's strength, and the tube could be removed later. Less than half an hour after I signed the paperwork, the surgery was cancelled.

Unfortunately an ultrasound revealed a blood clot in her heart. She had to be put on strong blood thinners immediately. Her condition rapidly deteriorated.

The next day she looked bad, but was holding her own. She had her ups and downs throughout the day.

When the doctor discussed her medical history with us the day after she was admitted to the hospital she vividly recalled having a caesarean section and the death of her premature baby who died two days later. After decades she still missed the daughter she never got to see or hold. My mother was put on a ventilator on her late daughter's birthday.

That evening the doctor came to talk to me. I think he wanted to convince me that it was time to shut off the ventilator. But when he learned that her vitals were improving, and she was producing lots of clear urine, he was surprised and encouraged. He ordered some more medication, and a couple of pints of blood.

The next day was Sunday. I was serving as the organist at church, and had already let them know that I would not be able to attend that morning. Several members of my church had been calling and texting me and coming to the hospital because they were concerned about my mother and me. Some even brought me food. When the doctor came to see her that evening he said she was better. I knew that because I had been watching her vitals all day, and she was more responsive when I talked to her and held her hand.

When I walked in the next morning her vitals did not look good. When I held her hand and tried talking to her throughout the day I didn't get much response from her, if any at all. Her arms and hands were swollen from the fluids and medications she was receiving. Sometimes her hands and arms felt warm and sometimes they felt cold. I remembered a couple of weeks earlier when she was still at home and I helped her sit up so she could eat how she held my hand for a little while and swung our hands back and forth, just being silly. That was my mother. The woman lying in the hospital bed did not look or act like my mother. I felt like she was gone already.

When the doctor came to see her later that day I was surprised when he came up with a few more ideas to try and help her. I was ready to turn off the ventilator, but I trusted him. If he wanted to try something to help my mother, I was willing to go along. I later told her nurse that if she didn't improve, maybe they could learn something that could help someone else. She improved a little, but not as much as we had hoped. I asked her nurse not to give her the second unit of blood the doctor had ordered earlier, unless there was some definite improvement. Blood is always in short supply.

After learning about the blood clot I was sure that most of the decline in her cognitive functioning was caused by restricted blood flow so her brain wasn't getting enough oxygen, a condition which I now know is called Vascular Dementia. That is why she improved when she had physical therapy, it increased her blood flow, and oxygen to the brain.

If I could have done more, I would have. I know that the doctors and nurses did everything they could have possibly done for her. They were kind and helpful to me too.

It's never easy to lose a parent, but I felt a sense of peace because I did my best, and I knew that the time had come, and she wanted to be with my father, and the daughter she never got to hold or even see, but still missed. She was put on the ventilator on my late sister's birthday, and I had them turn off the ventilator on the anniversary of her death. My mother had lived a life she filled with love and service to her family and others in need. The fact that she died on the anniversary of my sister's death seemed poetic. The timing made it much easier for me to accept our mother's death.

The roller coaster ride with my mother is finally over. I'm relieved that I don't have to struggle to get her to eat anymore, or check to see if she's still breathing (I actually did that several times), or worry about her falling. But the first time I came home from the store after her death she wasn't there to ask me if I had fun, or what I had bought that was good, or if I had spent all the money, and I missed that. I miss her humor, and her silliness. I miss her. But it's okay. We did our best. We're at peace.       

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