Lights in the darkness

We all love bright blue-skied days full of joy, peace, contentment. But in life we have our gray days. Sometimes we even have very dark days where we can barely see past the next minute that faces us, let alone the next day, the next step. In recent weeks, even months, with my mom struggling to care for my dad with Alzheimer’s whose abilities have continued to decline, the gray days have grown ever darker.

Even with an increase in the hours of home health aide help, my mother’s strength and overall health continued to decline as she persisted in taking care of my father. She was in trouble, and we all knew it. The last week of November I ramped up my time at their house and spent 4 out of the 5 weekdays there trying to step in for her with Dad’s care. My sister relieved me on the weekend, but called me Sunday morning, December  2nd.

“Mom thinks she needs to go to the hospital,” Carol said.

“I’ll be there in a half an hour.” I was already dressed, found a pair of shoes and left immediately. Carol met me at the door and said, “She doesn’t want to go to the hospital today anymore.” Mom was lying on the sofa looking pale and lifeless. I sat down beside her legs and spoke softly to her, trying to convince her to go. I handed her the phone and asked her to call 911. I wanted her to do it. I didn’t want to force her into anything.

“They’re probably not going to keep you,” I said.

“But you don’t know everything,” Mom said.

I did know that Mom has suffered from stomach or digestive problems her entire adult life and has always been very careful about what she eats, avoiding foods that cause her problems. But she’d gotten to the point where the only foods she could really tolerate were toast, cream of wheat, cheerios, and a turkey sandwich. She was taking every over-the-counter remedy available, but had continued to refuse to see a doctor for three years.

“What don’t I know?”

“A couple of days ago I found a lump here in my abdomen around my belly button,” she said.

I took the phone out of her hands. “You can’t tell me that, Mom, and expect me not to take you to the hospital.” I called 911 because she wanted to go in an ambulance and not wait in the ER. She simply felt too bad.

I stayed home with Dad.

The first phone call from my sisters at the hospital with Mom were optimistic. Her blood work and another initial test were good. Her stomach problems were related to her nerves, we all thought.

In the second phone call my sister told me that Mom’s cat scan showed that she has cancer throughout her abdomen.

And my world went pitch black dark.

Mark packed a bag for me and brought it up. I temporarily moved in.

Mom came back home that evening because even though they wanted her to stay for testing, she wanted to come home. We found an oncologist and scheduled some outpatient testing. Meanwhile Dad started having problems and by Tuesday night we were so concerned about about his rapid and shallow breathing that we called 911 for him. He spent six nights in the hospital on IV antibiotics. We took turns staying with him or with Mom so that neither would be alone overnight.

On Monday afternooon when Dad was discharged from the hospital, he was moved to a local nursing and rehabilitation facility. I went with him bringing the basket my sister had packed at home of his labeled clothes and a few personal items from his “office,” a card table beside their living room window.

“When you leave here,” I began to tell Dad daily the last few days he was hospitalized, “you’re going to move to another place where you can do rehab.” I was very careful now to avoid the “home” word, like we were with Annie when she was in the hospital.

At first the move to the nursing home seemed okay, even fine. It was a little more home-like than the hospital. His roommate is also nonverbal and looked like he slept a lot. A nurse station was down the hall. I moved Dad’s clothes into his closet and drawers while the staff got the initial admission things done. They asked me if he wanted his dinner in his room or in the dining room. I had heard that it was good for residents to get out of their rooms and eat in a social environment so I said, “Let’s take him to the dining room.”

I wasn’t in the dining room two seconds before I realized my mistake.

The residents who need assistance eating are assigned tables at the far end of the room. These are not the people who are able to sit upright in a chair and have conversations. When Dad saw where he was, he started to cry. And so did I. I imagined he thought, “How did I get here?” I think he may even have been horrified to find himself in a place where so many people were so disabled.

But it was too late to turn back now.

I pushed him to his assigned table near a big window. A woman, P., was already there and waiting. She is a tiny little woman in a large well-padded chair with head supports on either side. She didn’t move a muscle except for the fingers of her hands which held a soft white stuffed kitten that she gently squeezed from time to time. She watched us, but said nothing. I smiled at her, but got no response.

H. arrived at the table next. He sat across from Dad. He was in a reclined geri chair, had sores all over his head, and his mouth was trembling constantly with some kind of palsy. He didn’t say anything.

I felt myself falling apart. Mark had met me there and was sitting on the other side of Dad. “I have to go to the restroom,” I managed to utter, and I got up and left the room. Behind the closed door I was able to pull myself back together, and returned to the table.

I sat down, looked over at H., smiled and said, “Hello, H.” And miracle of miracles, he spoke. Then he lifted his hand and waved to Dad. I wasn’t sure if Dad noticed, so I told Dad to wave at H., which he did. And H. waved back.

Just one small light in the midst of darkness.

A few minutes later A. arrived. She is a sweet little lady who does speak.

“My dad doesn’t speak,” I told the table at large, “but he likes to listen. He is very interested in fishing and in WWII.”

“I was in WWII,” A. said. “I was born in Holland.”

“Dad wasn’t in WWII, actually. He served in the Korean War in Baumholder, Germany,” I said.

“I was there!” A. piped up.

A. may or may not be a reliable source, I started to think. But I was happy to have someone at the table who was able to speak.

Then a whole beam of light walked into the room and up to the table. P.’s daughter, K., had arrived with bright spirits, stopping to say or word or smile at other residents along the way. She sat beside her mother and helped her drink her fluids. P. is on a liquid diet. K. explained that her mother has Alzheimer’s and has been at this particular facility for 3 months. She visits her nearly every day, but she doesn’t feel like she has to. In the nursing home P. was in the previous two years, K. felt like she had to be there daily. “This is a really good place,” K. said.

And my world got just a little bit brighter.