The Small Things

I am reminded this morning of a book I read by Arundati Roy called The God of Small Things. It is set in India and is concerned about the sad and dangerous things that go on in the main characters’ family lives, set in a country where sad and dangerous things are happening on a much larger scale. So the main character prays to the God of Small Things.

The recent tragedy in Newtown has helped me keep my own tragedy in perspective. Although my parents are clearly suffering both physically and emotionally, there is some small comfort in knowing that they have lived full and relatively long lives. The children of Newtown have not.

We carry on and continue to march forward.

Dad is settled in his room at the nursing home. The room is semi-private and quite small which makes it difficult for his care. He is using a geri chair that takes up more space than a wheel chair, and they have to pull a Hoyer lift into the room to get him up or put him back in bed. It is quite a cramped ballet of movement when that occurs. We hope to get him moved to a larger room when one becomes available. His medical condition is a little complex because of the side effects from his prostate cancer radiation treatment years ago that have required him to be catheterized three times a day since. First he managed it on his own for a decade, then Mom took over. Recently we’ve tried the Foley cath but that probably led to the UTI and landed him in the hospital on Tuesday of our crisis week. Since we’ve had a variety of opinions recently from doctors in the hospital to the doctor at the nursing home, the Foley cath has been in, out, and now back in. It continues to be a big medical issue for him and may require a minor surgery for a surgically inserted cath. The Foley cath appears to cause him pain based on facial expression and body movements.

Dad’s swallowing ability has been evaluated at the hospital and re-evaluated at the nursing home. It continues to be a source of concern. He is on pureed foods only and nectar-thick liquids. Initially we had to give him his drinks by spoon, but a straw has been approved if it is well-monitored so that he only gets a sip at a time. We have to wait quite a while between bites of foods and sips of drinks. His swallowing reflex is very slow. The aides at the nursing home feed him most of his meals, but we’ve kept our morning home health aides working with him for a transition period. I try to visit at meal times to be able to feed him occasionally.

Mom finally got enough strength up to visit Dad on Thursday. She hadn’t seen him since he went to the hospital on the previous Tuesday night. We were in the middle of a Christmas party entertainment at the nursing home when Mom arrived with my sibling.  Dad was crying every time a new song started, so it didn’t really feel all that much like a celebration to me. He did seem to listen attentively to the jokes and trivia questions from the entertainers. Mom wasn’t sure Dad recognized her at first. He did not respond as I imagined he might. He remained fairly neutral. I have no idea what he’s thinking.

Dad is trying harder than ever to speak. Yesterday I asked him to whisper because sometimes he was able to do that when he couldn’t actually talk out loud. I leaned in close over his bed, next to his head, and felt his warm breath blowing the wisps of hair from my forehead with his efforts to expel words. The speech therapist who is working with him on swallowing, thinks he may be able to use a communication board. Today I am working on getting photos to her of family members, foods, drinks, and other things he likes for her to make the communication board with. I am afraid to hope.

Meanwhile, my siblings are getting my mom ready to move. They are sorting through things as she chooses what she wants to take with her. Yesterday the dining room table held a stack of sheets and a few mementos. I took three family photos off the wall to hang in Dad’s room in addition to what we’ve already put up there.

The little Christmas tree and the Christmas bells still decorate the living room. One day soon I will have to return and take them back down without Mom sitting in the chair in the corner. At least I won’t have to look at the empty chair. It is going with her.

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.