My own mother has often said that she would love to visit but she’s afraid it might snow. She’s 88 years old.

Equal with cancer, falling is the great fear of the aged. The older and less active seniors are most likely to fall. They may get dizzy from low blood pressure or their meds may affect their sense of balance. If a fall results in a broken bone the resulting constraints may lead to pneumonia or worse.

Sorry to begin on such a negative tone, but falling is such a serious topic. My fear of an icy parking lot is laughable by comparison.

OK, so I shuffled across the icy parking lot to the apartment building. As I went to the front desk to sign in, the guard told me that Henry had left. I learned that he was moved to a nursing home because his family was traveling out of town to attend his grandson’s wedding. Now I have to track him down.

When I saw Henry this time, he mentioned that he was taking a new drug to help reduce his shortness of breath. You can see my description of his oxygen consumption in my previous post. Henry had earlier told me that he had trouble breathing and I was happy to hear that the new drug was working. He was breathing comfortably now. Filling our lungs with air is something I took for granted until I heard the anxiety patients feel when their breath becomes challenged.

Henry and I also talked about the recent “intergenerational visits.” This is an activity where the residents meet with four and five year-old children from a local kindergarten. It’s a field trip for the children, but it’s really a bright spot in the lives of the patients.

Often the patients are seated in chairs or wheelchairs around the exterior of a large activity room. The children enter under the supervision of their teachers. Some of the children clearly recognize a resident they’ve met before, but that’s rare. These visits aren’t frequent enough to facilitate that kind of relationship. The more common interaction is when a child is brought to a senior and introduced. The patient is typically so happy for the visit that they shower the children with questions and praise for their simple answers.

You can see the children become more comfortable and confident as the time passes. There are some patients who have trouble communicating with the children because if a stroke or some other disability. In those cases the teacher aids in the interaction. If you spend any time in a nursing home you note a large population of patients who sit in a quite stupor unable to communicate. Those residents are noticeably absent when the children arrive. It’s sad for those patients, but understandable given the innocents in the room.

Henry clearly enjoys these visits and told me it restores his confidence in the future. He says that these visits have made him confident that the next generation will be smarter than any before.

Just as quickly as the conversation about children came up, it changed to focus on Henry’s girlfriend. He described his continued interest in women.  He said he hasn’t lost the attraction. His girlfriend used to live in an apartment near his, but her children moved her to another facility. They stay in touch via frequent phone calls, and the rare occasion when her children drive her over for a visit.

I was struck with the similarities to a teenage relationship when parents drive you and your girlfriend to a movie and pick you up at the appropriate time. It’s touching to hear the comfort he expresses when he describes their attraction.

If you remember, Henry is a hospice patient I’ve been visiting for some time. He lives alone in an assisted-living facility.

I brought a blueberry muffin and hot tea for Henry when I visited this week. As I entered the apartment he was dressed in what he called “street clothes” and sitting in his La-Z-Boy recliner. His feet were elevated and he had an oxygen line under his nose. He looked surprisingly comfortable.

As he examined the bag of treats I’d delivered, I noticed the clear plastic oxygen tube lying on the floor. There was a long tangle running twelve feet across the room to the oxygen generator in his bedroom. It looked like a hazard and when I asked about the mess he responded, “You should watch your step.” He added, “…hardly anyone has tripped over it.” As I turned to see his face, he was grinning.

We sat and talked about a wide range of subjects.  He joined me on the couch and we went through every photo from his 90th birthday. The photos resembled any other birthday party with twenty or more people of all ages eating and drinking. One frail man sitting in a wheelchair was at the center of every shot. They made him wear a pointy hat and pretend to blow out the candles.

The candles weren’t lit because you can’t have an open flame near oxygen. A serious fire, that’s impossible to extinguish, could erupt from the flowing oxygen. Of course, the person at the end of the tube gets the worst of the fire. Henry said if a fire broke out, he’d be “toast in a wheelchair.”

Since Henry doesn’t walk very far, his family had taken him to a local restaurant with a facility for small gatherings. The room was modest with dark wood paneling, cafeteria tables and folding chairs. It hadn’t been renovated in years and I could imagine the local Elk’s Club meeting there the first Thursday of each month.

I learned that Henry has four children with only one living nearby. The other three flew in for the event and made him very proud. As we went through the birthday photos, he pointed out each person and gave me his or her name. The birthday party was one of the rare opportunities for him to leave his apartment and I could tell he enjoyed it (even as it looked awkward to me). Simple pleasures.

When questioned about any regrets they had or anything they would do differently, common themes surfaced again and again. Here are the most common five.

http://bit.ly/uIFGx0 is a link to her blog.

I haven’t been able to visit with Henry recently, because I’ve been in the hospital having a second knee replaced. If you remember I had my left knee surgery in July. Over the years the pain had increased to the point that I looked forward to having two new knees.

In my family, crippling Arthritis is handed down from generation to generation like an old overcoat no one wants to wear. Many relatives my mother’s age lived out their days in a wheel chair or walking in great pain with canes or crutches. Like them I had no cartilage in my joints and walking had become very painful.

Here’s a detail from a previous visit I want to share.

As I mentioned in an earlier post, Henry appreciates a cup of hot tea with milk and a muffin. He told me again how blueberry was his favorite type of muffin. As he removed the cover from his tea, I slid the muffin from its bag. He was leaning back in his recliner chair with a napkin spread across his belly just in case he lost a crumb or a blueberry.

The muffin it was still very warm. Steam rose as he broke the muffin in half. He offered me half and remarked that the blueberries were scattered evenly throughout the muffin. “Scattered” is my word. He described them as “suspended” in the batter. I asked him why the blueberries didn’t sink to the bottom and he didn’t know for sure. He liked to cook, but never took the time to bake. His theory was that something had made the berries float, but not to the top.

When I mentioned that he analyzed the situation like an engineer, he told me he was an engineer, a self-taught engineer. To be specific he was a tool and die maker. That’s a craftsman who makes precision tools used in manufacturing processes. That’s a trade he learned as an apprentice in a shop where his father worked for many years before Henry was born.

Over a century ago many men with technical and artistic skills moved between the careers of tool maker and engineer at different times of their life, depending on the turns of their particular educational and career path. I later learned that it was only after World War II that engineering became a profession defined by a university or college engineering degree. That began the separation between blue-collar and white-collar jobs in manufacturing.

While Henry talked, I used my smartphone to look up “fruit suspended in batter.” I learned that you should take your blueberries and roll them liberally in flour. That way the fruit won’t sink to the bottom of the muffin tin before the batter cooks.

Who would have thought that a good muffin was a triumph of engineering?

When I arrived he was sitting in his bathrobe. Henry said his ankles were swollen, so he was told to elevate his feet.  Otherwise, he said he felt well. “Normal for an old guy.” he said.

When I asked if he was in pain, he told me about the same pain on the right side of his face he had described before. He said the hospice doctor had prescribed a drug that gave him the first relief in years.

He told me he had gotten used to the pain because he had experienced if from childhood.  He was convinced that the pain came from being forced to change from being left-handed to right-handed. It was in elementary school when his teacher told him to do everything with his right hand. When I told him I had always suffered from being left-handed in a right-handed world, he said. “I’ll bet you’re probably right handed in everything but writing and eating.” I was shocked. How did he know?

We sat and talked about his life, his work and his death.  He said he realized that his time was short and he had no regrets. It always surprises me when hospice patients accept their situation. I sense that most patients understand, but they avoid any mention of the topic. That’s why his statement surprised me. I was relieved because I didn’t have to tiptoe around the “elephant in the room.”

As the conversation turned to his family, Henry started to tell about his father. This was the first time he had mentioned his father. He told me his father was a proud socialist.

He described how his family suffered during the Depression. He described the desperate circumstances of their neighbors. Most men were out of work and borrowing from relatives to make ends meet. Being a socialist and a union man was difficult, because most people would take his job if they had the opportunity. Henry said that his father was a skilled tool and die maker and always had work during the Great Depression.

As he related how fortunate his family was, he praised his father in rare terms that conveyed his love and admiration. Henry told me his memories of the factory where his father worked. I could smell the oil and smoke from his words. The company was struggling to cut expenses and stay in business as many had failed. As he described the working environment he told instances of his father’s generosity.

I was surprised and moved to learn about one incident. I could hear the emotion in Henry’s voice when he said his father told management he wanted to cut his hours in half, so another man could keep his job. It was a desperate time for many but his father faced the challenge and made a profound impression on his son.

I felt fortunate to hear this story and thanked Henry for sharing it. He smiled and said simply, “my father was a good man.”

When I knocked at the door to Henry’s apartment he yelled, “come in.” Before I opened the door, I could smell something cooking. He called me to come into the kitchen where he was cooking stew. He was browning some beef in a pot and had all of the vegetables cleaned, cut and lined up on the counter. Potatoes, carrots, peppers and onions all ready to be added in turn. He stirred the meat with a long wooden spoon and told me how much he enjoyed cooking. He had some secret spices in a bowl. He described how he would add peas at the end when everything else was ready.

I’m not a natural cook, but Henry made it look easy. He had the recipe in his mind and the ingredients on his counter. It reminded me of those cooking shows on TV where the famous chef has everything in glass bowls and speaks with an Italian accent.

Henry motioned for me to sit at one of his kitchen chairs. His apartment has a kitchen, living room and one bedroom. From the hallway you enter into the living room. The kitchen is on the right and the bedroom to the left. On the opposite side of the living room there’s a window. Henry’s apartment is in the basement, so the view is at eye-level to the grass. Henry and I sat in the kitchen and had a long talk.  He told me about his interest in cooking, ballroom dancing and painting.

We talked until we smelled something burning. That’s when he went back to cooking. Once all of the ingredients were in the pot, he added the lid and came back to our conversation.

I learned that he worked as an engineer without a college degree. I wasn’t surprised.

One side of his kitchen table was cluttered with paints and brushes. When I asked he proudly presented some of his work. The paintings were small on 8 x 10 inch pieces of stretched canvas like you see in the art section of some stores. He told me the supplies came from his children. He mentioned a daughter, a son with no children and a granddaughter. It was clear that the granddaughter was a favorite.

The small canvases were scenes made from geometric shapes. Think landscapes made from circles, squares and triangles. He was proud of one with a white foreground with yellow triangles. The white became the beach with yellow sailboats in the harbor. I thought the paintings had no emotion, but he described what he saw with warmth and heartfelt affection. Who am I to be a critic?

At one point he told me he was having trouble with his computer.  I was surprised and said to myself, “…he’s 90 and uses a computer.” He said he was having a problem and asked me to take a look.

He was using a spreadsheet to list his financial records and accounts. He told me that he wanted everything to be clear when he wasn’t around anymore. He saved the document to his desktop each time he made a change. His desktop was covered with files. He hadn’t mastered a filing system.

His concern was that he couldn’t find his Sudoku game anymore online anymore. I had no idea where he found it and neither did he. I introduced him to Google and told him he could find a zillion Sudoku games.

He sent me an email saying he enjoyed seeing me.

As I said, a hospice patient can offer more than I’ve given. Henry is a perfect example.

His apartment was at the end of the hall and the door was open. He lives in a Jewish independent living facility where security seems unneeded. As I walked to his apartment I noticed that there were art projects on the walls. Many with the Star of David in the design and quotes from famous Rabbis illustrated.

Strangely, there was also a variety of exercise equipment sitting in the hallway.  I didn’t see anyone using them, and it seemed odd like maybe the exercise room was being cleaned and they were move out for the cleaners.

When I opened the door Henry was sitting in a recliner chair with his back to the door. He was facing the television that was on, but the sound was muted. He wasn’t reading and didn’t seem to be watching TV, which surprised me. He was just sitting comfortably with his feet up.

When I walked around to face him, I introduced myself and told him I was a hospice volunteer. He nodded his head that he understood. The hospice organization will typically tell me if the family has told the patient that they’re receiving hospice care. In Henry’s case his daughter had made him aware.

The hospice benefit is one of the best pieces of legislation our the congress has ever approved. Today it’s often threatened with each move to cut the deficit. Then again, who wants to be seen as the one who eliminated the hospice benefit.

I sat on his couch and we had a long conversation.  He laughed and seemed in very good spirits.

Hospice workers are always required to ask about pain. The hospice mantra is that no one should die in pain or alone. When I asked if he was in pain, he described a neurological pain on the right side of his face.  He said he had experienced this pain for his whole life and did not want to say anything for the pain.

I told I would visit again if that was OK. He looked at me with a confused expression and said, “why that would be nice.”

Credit: The New York Times
________________________________________
September 5, 2011
Caregivers Don’t Always See the Spirit Diminishing
By JUDITH GROCH
As a loved one arrives at the end of life, how do we know when it’s really over?
I don’t mean, when should we act on the knowledge that life is ending — that is an entirely different problem. Rather, when do we grasp, emotionally, where things really stand?

For nine years my husband, Bill, was a dialysis patient. His kidneys had failed. Their microscopic tubules could no longer handle the job of correcting blood chemistries and cleansing Bill’s blood of the toxins and impurities that accumulate from daily living. Three times a week, an ambulette would arrive to take him to the hospital’s dialysis center. Then, while he was hooked up to the lifesaving artificial kidney, four long, boring hours followed during which Bill’s blood made the circuit via tubes from his arm to the dialysis machine and back again.

The machine, with its little blinking lights, was a lifesaving substitute but hardly a match for living kidneys. Once home, Bill, like other patients, usually felt awful, weak and washed out. In fact, dialysis patients literally are washed out. But they have been given a new lease on life, at least for one or two days.

In the early years Bill managed dialysis well, listening to music or watching TV; he handled his work on nondialysis days. He even traveled, arranging dialysis at the cities his work took him to. In the later years, when he became too weak and ill to travel, he lived only by the rhythms of dialysis. The hospital today, free tomorrow. In the last months of his life, Bill often grumbled about the blood cleansing that kept him alive.

As in the case of many dialysis patients, other health problems cropped up. The lack of kidney function already required the unnatural, sudden chemical cleansing of dialysis and cost him the hormonal gifts provided by working kidneys. Other ailments arrived, some affecting his heart. Bill became truly ill. He enjoyed his family, watched basketball, railed against political stupidities and played short sessions of bridge. But the windows were closing. Busy with the many chores involved in caring for a sick person, I did not truly grasp the death of spirit in this proud man.

Bill’s doctors were kind and patient, and cared for him as best they could. But they had a job to do: manage his blood chemistries and other health problems, then move on to the next patient. Bill’s life was slipping away, and I am pretty certain he knew it. We did not talk about it.

Then came a sunlit summer day when, advised by my own doctor to get away for a bit, I left Bill with his faithful aide. With the rest of my family, including my grandson, Zach, I traveled to a horse show at Lake Placid in the Adirondack Mountains. On that brilliant morning, puffy white clouds skittered across the electric blue sky that topped the mountain peaks. I can still see it.

While Zach prepared to compete in an equestrian jumping class, I enjoyed myself wandering around the grassy vendors’ court, lined with shops, pretty hats, fancy belts, shirts and riding gear. The atmosphere was warm and carefree. Visitors and riders strolled by, munching, gossiping and laughing. Beyond, I heard the call announcing the order in which riders were to enter the ring for the next round: “Stacy on deck, Catherine one, Karen two, Ellie three, Zach four.” I still had a few playful minutes before rushing off to watch him.

Suddenly my new cellphone rang. In my world, a ringing phone was rarely good news. Bill’s doctors were on the line. “Please, please,” they urged. “Bill is refusing to go to dialysis. You need to talk to him. He’ll listen to you.”

So there, while the sun glittered, the white clouds danced and children tumbled all around, I got on the phone with Bill and started pleading, then demanding. In a weak voice, Bill said he was not going. He wanted life, but that morning he did not want to go to dialysis. So I got tough and said he absolutely had to go. That was my job as assigned by the doctors. Back and forth we went until finally I prevailed. With his aide’s help, Bill got into his wheelchair and departed with the ambulette driver. I had saved the day. The doctors thanked me, and we hung up.

For a moment, the beautiful spell broken, I stood there shaken: one foot in the world of grass and mountains, the other in the ominous, gray hospital world. Then I put the phone away and headed back to the horse show.

But — and it is a very big but — for years now I have wondered what I had failed to understand that day. Bill was getting cantankerous and didn’t want to do what was right for him. I had to be strong and “stick with the program.” I was the only one who could do it.

What had I missed? Looking back, I didn’t grasp that not only was Bill sick of dialysis, but he was protesting the quality of life it maintained. He never said he did not want to live anymore, but paradoxically he also was suggesting that he no longer had the courage to be a dialysis patient. Although Bill was not talking about giving up and dying, somewhere the spirit in this brave, brilliant man was fading.

I was so close I couldn’t see it.

I do not call myself to task for my lack of understanding. It is probably useful that I didn’t understand, or I would have gotten myself and my family into a dreadful existential tangle. But at least, looking back, it has helped me call a spade a spade and give Bill credit for what he, at least, knew.

In sunlight, under clouds, even in rain, I have returned to Lake Placid many times since that day to watch Zach compete, but I never walk around that patch of grass without hearing Bill on the phone. Beyond stubbornness, my husband was trying to tell me something, but I had missed it.

After that day, there were no more protests. Bill dutifully kept his dialysis appointments until he exited life a few months later, his heart and body having failed. In that sense, he called the shots. No more dialysis.

Judith Groch is a medical editor and writer.

As a hospice volunteer you can get to know someone in a short time and for a short time. You can be a break from the routine.

Simon was fortunate to have a good family. I was fortunate to be part of that family.