My Hospice Blog – He was given a very small Communion wafer and a blessing.

[Larry is a hospice patient with end-stage dementia and his wife Kathy cares for him at home.]

I called Kathy to say I was running late and she told me Larry was doing so much better and the hospice nurse said he was on the upswing. Earlier in the week, he had been vomiting and very weak. He appeared to have lost weight, but when I asked Kathy told me he had enjoyed a large bowl of oatmeal with fruit this morning for breakfast. Their daughter had made some soup and, Kathy took me to the kitchen to see the vegetable soup warming on the stove. It looked very hearty and had a lovely fragrance. I told her the only thing missing was cornbread and we joked about my Southern roots.

Patients often lose weight as the reach the end of life. Larry’s family is very aware of the subtle changes that are coming and what to expect. Hospice nurses are trained to help the family understand the stages of the dying process and they do a great job.

Kathy took me up stairs for our visit. Larry sat in their bedroom in his wheelchair and when I greeted him he responded with what sounded like the beginning of a response, but drifted off after the second word. He appeared warm dressed in a flannel shirt and thick fleece vest. Kathy said they decided not to take him downstairs because his walking was very unsteady and he was still weak after his brief illness.

When I asked about her day, Kathy told me that their parish priest had come by for a visit. She said she had called to ask if he would come by and he told her he would come on his way to visit a nursing home in the neighborhood. She told me that he had given Larry a very small Communion wafer and blessed him. She said the priest had not visited in quite some time and asked if he could bless Larry. As she described the steps she mentioned that the priest anointed Harry’s forehead with oil in the sign of the cross. She mentioned that was called the “Last Rites.” I told her I remembered that sacrament from my parochial school education.

I asked how that made her feel and she said she understood the priest’s concern. She told me the priest said he was very busy and might not be available at the end. I thought that sounded harsh given the condition Larry is in today. When I asked, Kathy confided that she was resigned to the fact that Larry was dying.

My Hospice Blog — Larry likes his Jello with ice cream.

[Larry is a hospice patient with end-stage dementia and his wife Kathy cares for him at home.]

I called and didn’t leave a message, but as soon as I put down my phone it rang and Kathy called me back. She asked if I had time to come over. Her daughters were all away and she told me she wanted a companion. I had called her because I thought I might drop by on my way home from the office.

We sat across from each other at the kitchen table and talked while Larry sat at the head of the table. He held a dishcloth and wiped his end of the table in large circular motions. He continued with occasional stops. As he wiped the table he talked. He didn’t talk to anyone. He just talks. His phrases made no sense, but there was an occasional statement that made us snap to attention. I don’t think he knows what he’s saying and he never answers a question you pose to him, but it is striking how there are those moments when he does seem to be part of the conversation. He looks at you and speaks, but his eyes wander away quickly, the words are disconnected.

I asked Kathy if it was painful to see him this way and she looked down, pursed her lips and shook her head. She told me she’d come to accept the fact that he wasn’t coming back.

Larry had eaten his dinner, but Kathy decided it was time for dessert. She offered him some strawberry Jello with a bit of vanilla ice cream. When she touched his lips with the spoon he recoiled and pushed her hand away. He seemed agitated. He remained tense for a few moments and then went back to wiping the table.

Coincidently, at the time he reacted so negatively, his daughter and granddaughter arrived at the back door. Their dog barked when he saw us, but Harry didn’t react to the noise. They came in and decided to assist Kathy. Larry’s daughter took the spoon and waited for the moment when Henry opened his mouth. At just the right moment she fed him the dessert and he reacted with a smile as he ate the Jello. She continued this technique wile we spoke until he had eaten all of the dessert. We were all watching closely and applauded when she successfully got the spoon into his mouth. When the bowl was empty Henry had a speck of Jello on his lip and ice cream drips on his shirt. Everyone was pleased. Another small mission accomplished.

Larry likes his Jello with ice cream.

My Hospice Blog – Kathy called her technique “shadow feeding.”

[Larry is a hospice patient with end-stage dementia and his wife Kathy cares for him at home.]

When I called Kathy to ask if I could stop by for a visit, she seemed hesitant. She told me she was cooking dinner and about to feed Larry. I said I understood that she was busy and asked if she needed any help. She hesitated for a moment and then said her daughter was running late and she’d like to talk. She said “come on over.”

The front door was open and so I knocked at the screen. Kathy called to say come in. I could smell something cooking as I entered the hallway. She met me half way to the kitchen and told me she was steaming some broccoli. She also had rice and left-over chicken. She combined things in a bowl and then cut everything into small pieces. She placed the bowl on the table in front of Harry and then crossed the kitchen to open a drawer full of towels. She took out a bib she’d made from an old bath towel and held it up for me to see. It fit him perfectly.

As she placed the bib around Larry’s neck he became a bit agitated, but calmed when she placed her hands on his shoulders and leaned to speak softly to him.

Before beginning to feed Larry she handed him a large plastic measuring spoon. He grasped the spoon and made motions as though he was about to feed himself. His motions were uncoordinated and I wondered how this would work. When he lifted the plastic spoon and opened his mouth, Kathy would put in a spoon full of food. Each time he lifted his own plastic spoon he’d open his mouth and accept the food she offered. They repeated this process again and again. He never had food in his spoon, but repeated the motion.

Spoon after spoon she fed Larry until the bowl was almost empty. She told me he loved cranberry sauce with his chicken and a bit on the spoon led him to clean the bowl.

Kathy called her technique “shadow feeding.” She told me she discovered it about six months ago and it made a struggle into a game. I told her I loved the name. I said I would steal the name and copyright the idea. She grinned and winked at me.

My Hospice Blog—The ships all had three masts with tiny white sails.

[Larry is a hospice patient with end-stage dementia and his wife Kathy cares for him at home.]

When I visited Larry on Saturday he was sitting in the kitchen in his usual place at the head of the table. I had to walk because of the snow. There sidewalk and front porch were clear because their youngest daughter knew how to use Larry’s snow blower.

When I entered their home it was warm as always and Larry was sitting in the kitchen. As I’ve mentioned previously, Larry’s son had attached a piece of plywood to extend the kitchen tabletop over Larry’s wheelchair. The table extension is covered with a plastic-coated, checkered tablecloth. Larry sits in his wheelchair constantly wiping the table with a dishcloth. He moves in circular motions. I noticed that the edges of the tablecloth were worn from his repetition and protected with gray duct tape.

Kathy was at the stove making beef stew while I sat with Larry. I asked for her recipe and learned that it was never written down. She told me that beef stew was one of the first things she learned to cook. It became a staple as long as she’s been married. Ironically, my wife was planning to cook beef stew later on Saturday and learning Kathy’s recipe was such a treat. The one unusual detail was turnips. She adds cubes of uncooked turnip to the stew early in the process and it dissolves over the cooking time and disappears into the sauce.

I asked if Larry had gained or lost weight. He looks the same as he has since I met him over six months ago. He still doesn’t acknowledge my presence unless I touch him and speak directly to his ear. Even then he may pause for a moment and then resume talking to himself.

I asked Kathy what kind of foods Larry enjoyed and she said his favorites had always been simple things. She said he loved any kind of fish and he could cook although he rarely prepared a meal. She explained that when he was working on ships, they had to prepare their own meals and bake their own bread. Often Larry and the other men would be at sea for two weeks as a time. Kathy told me that fresh food wasn’t available at sea and much of what they ate came in cans. The major treat they had was fresh mackerel they were able to catch from the boat.

I remembered seeing a model ship in their living room living room. The ship was inside a bottle. I’ve seen them before but never this small. It was sitting on a shelf with two others. The bottles were different, but the ships all had three masts with tiny white sails.

I asked if there was a connection and Kathy smiled. She told me that Larry had made them many years ago when he was a sailor. They were clearly her treasures.

My Hospice Blog – He didn’t remember what had happened less than 24 hours before.

[Larry is a hospice patient with end-stage dementia and his wife Kathy cares for him at home.]

I called Kathy to ask if she needed any help today and was told that she had some errands to run. She asked if I would stay with Larry while she was away.

Larry was sitting in the living room in his wheelchair. There was a small wooden table in from of him, and he was polishing the table with a dishcloth. I greeted him when I entered the room and placed my hand on his shoulder. I said, “How are you doing.” He responded, “Well.” As I waited for his response, he began to talk to himself and resumed polishing the table. This scene has been repeated every time I’ve seen Larry over the last six months. Nothing has changed.

Sitting with Larry is a very solitary activity. He polished and spoke nonsense for half an hour until Kathy returned. For that half hour I sat and watched him. I didn’t say much. When I did he paid no attention. He did all the talking.

When Kathy returned we sat and talked about the 30 minutes since we’d seen each other. Not much had changed. She told me that she didn’t drive as much as she had in the past, but enjoyed getting out. As we talked about driving she told me a story about the last time Larry drove alone.

This happened over ten years ago when they were both beginning to realize that something was affecting his thinking. Harry had driven his granddaughter to pick up a new puppy. Kathy described the adorable the scene when the young girl and her puppy came home for the first time.

The following morning Kathy said she asked Larry a question about the dog and he said, “what puppy?” She was surprised that he didn’t remember what had happened less than 24 hours before. When she explained the charming scene, Larry told her he just forgot. To this day, Kathy remembered how surprised she was that Larry’s memory had become so bad. He dismissed her concern and said he was going to a local nursery to pick up some shrubs for the garden in their back yard. Kathy lovingly described the beautiful gardens Larry had designed and built in their backyard. After he retired landscaping had become his passion. She remembered spend all that summer enjoying the yard.

Unfortunately that day Larry didn’t return from the nursery for three hours. The store is only 15 minutes away and when she called they told her he had left hours ago. The sales clerk knew Larry well and said he seemed to be OK when he left. When Larry returned, she remembers that he was distraught. He had made a wrong turn as he left and driven in the wrong direction for hours. He told her that he stopped for gas and asked for directions. Then he asked them to draw a map because he was afraid to be lost again. Kathy said that Larry was familiar with all the neighboring towns and had never been lost before. She met him in the driveway when she heard him drive in and remembered the discussion they had. He told her he had been concerned about what was happening and they agreed to speak to a doctor.

Larry was referral to a neurologist who conducted several examinations and numerous tests. The physician said Larry shouldn’t drive alone. Kathy remembered that Larry told the doctor he “…had a good chauffeur.” and never again drove alone again. After a short time he stopped driving all together.

Kathy confided that the memories of that weekend and the conversation in their driveway was still very fresh in her mind.

My Hospice Blog – He put his cup onto its saucer and smiled broadly.

[Larry is a hospice patient with end-stage dementia and his wife Kathleen cares for him at home.]

A sheet of notebook paper was posted on the front door when I arrived. It stated that the doorbell was not working and requested that visitors knock. I knocked on the wooden edge of the door and waited for a while. With no response I decided to tap on the glass with a pin knife I carried in my pocket. The result was a much louder alert, which typically generates a response. There is no danger of damage to the glass from my very small red-handled Swiss Army knife. (I’m sure it has no connection to the actual Swiss Army if there actually is a Swiss Army.) The sharp sound from my knife on the glass didn’t get a response either. I could hear voices inside and didn’t want to knock again since I was sure they must be busy with some activity related to Larry. It turned out that I was partly correct.

I decided to walk around to the side of the house to a large glass sliding door which looks out from the kitchen. When I turned the corner I saw Larry in his usual position at the head of the table and Kathy at the stove with her back to the door. There was a man sitting at the table near Larry. The man saw me and said something to Kathy who put down her teapot and walked over to unlock the glass door.

She welcomed me wearing an apron with Christmas scenes printed on the front. It was white with red poinsettias, Santa, elves, candy canes and reindeer hitched to the sleigh. I’m sure she’s about to pack it away with the Christmas decorations after New Years Day.

The man turned out to be David, the home health aide from hospice. We had never met. He was very soft spoken as he responded to my introduction. He put his cup onto its saucer and smiled broadly as he rose and reached across the table to shake my hand. Kathy had mentioned David’s name several times. Most often she responded to my phone calls saying that David was bathing or shaving Larry and I should come to visit later. It was interesting to observe his interaction with Larry. He kept his hand on Larry’s arm as he spoke to me. He spoke so softly I could barely hear and asked him to repeat himself. He would respond and speak just as softly as before.

Kathy asked if I would like a cup of Irish tea. She asked David what he was drinking and he responded “lemon zest” which didn’t sound very Irish to me. She poured me some tea from a metal teapot she referred to as a “kettle.” The cup she handed me also had a matching saucer and the tea was very dark. She said it was strong and placed a small china bowl of sugar cubes in front of me. Next she placed a spoon on the napkin and asked if skim milk was OK.

I asked about Larry and they both responded with a list of his activities that morning. Kathy added a description of the holiday festivities. I learned about the family members who attended Christmas dinner at the dining room table in the next room. Kathy told me that she, her daughter and granddaughter (who both live upstairs) had prepared a turkey and all of the vegetables for 18 people. As she described all of the desserts, David rose to put his cup into the sink. He leaned over and put his arm around Larry’s shoulder as he told us he was leaving. It was an intimate gesture from someone who obviously has a close relationship with Larry and the family.

As I stood to say goodbye he offered a quiet response and a very soft handshake. He is a very gentle man and once he left the house Kathy praised him for his kindness. I‘ve been a volunteer for seven years and rarely met a hospice employee as caring as David.

The hospice caregivers are a full-time interdisciplinary team includes a nurse, social worker, chaplain, home health aide and a volunteer working under the direction of a medical director. Volunteers, like myself, are not paid and are typically part time.

Hospice care is an elected benefit covered under Medicare for a beneficiary who meets all of the requirements. There is not charge to the patient or family. Hospice patients receive care in their home or outside in a nursing home, assisted-living facility or hospital.

A doctor must certify that the patient has a terminal illness with a prognosis of six months or less.

The patient or their family must signs a statement indicating that they elect the Hospice benefit and waive all other rights to Medicare coverage for services that are related to the treatment of the terminal illness.

Patients accept their limited time and choose not to pursue extensive treatments to prolong their lives. The patients I’ve worked with have decided that their last six months should be spent with family and friends.

Hospice care offers the great comfort that they will not die in pain or alone.

My Hospice Blog – “Go raibh mile maith agat!”

[Larry is a hospice patient with end-stage dementia and his wife Kathy cares for him at home.]

If you’ve read the story of Larry’s story you’ll know that he seems unable to communicate. I’ve referred to it as “talking to himself.” He will begin speaking in a disconnected stream of phrases with three or four words. He often speaks with conviction and occasionally he seems to scold and will wave his hand in the air to emphasize that he’s upset.

When I visited Larry seemed very comfortable and not much different from the last time I’d seen him. I said hello and asked him how he was doing. He answered, “Well alright” and then drifted away as he always does. He occasionally whistles and smiles but makes no sense.

Kathy and I were talking about Ireland and Gaelic in particular. She was teaching me some simple phrases told me how to say, As she spoke Larry seemed to respond in Gaelic. It was just a word, but enough to make you wonder how much he understands. While she was talking he stopped talking to himself and said, “Go raibh mile maith agat!”

That translates into “thank you very much.” She was stunned.

OK. Is he isolated in himself as he appears or does he understand choose not respond?

My Hospice Blog – It looked fine once they added lights and ornaments.

[Larry is a hospice patient with end-stage dementia and his wife Kathy cares for him at home.]

I was alone with Larry for most of my visit today. Kathy had told me she wanted to visit her niece. Larry and I listened to Christmas music and he talked to himself for the whole time she was away. Kathy went to visit her sister’s grave. Kathy told me that her sister always liked holly so she took some when she went to visit her niece. Kathy always places holly on the headstone to celebrate her sister’s birthday.

Kathy was gone much longer that usual. When she returned she told me she appreciated my visit. Her daughter returned home a few minutes later with a small Christmas tree for her apartment upstairs. The arrival of the tree prompted lots of holiday stories and one in particular stood out.

They told me that Larry worked part time as a landscaper and loved to find the best tree for the holiday. They related the story of one year he told them he and his brother would get a tree while the women were shopping. Kathy returned to find the most forlorn, ill-shaped tree they’d ever seen. Larry and his brother had gone to find a tree and decided that they were all too expensive. They decided to cut the top out off one of the hemlocks growing along their driveway. Harry told Kathy he’d only paid $35 for it and she told him to “…take it back this minute.” Larry’s brother couldn’t keep a straight face, so the true story was revealed. Kathy and her daughter said they all laughed for nearly fifteen minutes and then decided to keep the sad little tree. It was actually a branch, but it looked fine once they added lights and ornaments. Kathy’s daughter said the rest of the children didn’t notice once the presents were displayed on the floor around it.

$35 went into the collection plate at church the next day.

My Hospice Blog – It turned out to be a joyous and poignant occasion for them both.

[Larry is a hospice patient with end-stage dementia and his wife Kathy cares for him at home.]

Kathy was home by herself with Larry when my wife and I stopped by Sunday afternoon. Larry seemed a bit subdued today and didn’t make a sound for the first 15 minutes of our visit. Kathy said he hadn’t slept well and was probably tired. After we spoke for a while he seemed to chuckle and slowly began to talk to himself. I’ve decided that “talking to himself” is the best way to describe his one-sided conversations.

We talked with Kathy for quite some time over a cup of tea. Two of their children and their families had come over for Thanksgiving dinner. She said it was quite pleasant and Larry was in good spirits. She told us that their grandson, young Larry, was there for dinner after playing in his traditional high school football game that morning. His team had won but he was sad that Larry hasn’t been able to attend and now he’s a senior. Kathy said that as a young boy he always followed Larry around the yard and asked a lot of questions. She told us that they were very close and Harry’s decline had deeply affected young Harry.

Kathy related the story of young Larry’s church group travel to Ireland last summer. He took a side trip to the small island where Larry had grown up. As they walked through the island’s only town he struck up a conversation with an older man standing with his bicycle. He intended to ask for directions, but young Larry asked the man if he had known the O’Connell family. The man told him that he did remember the family who had moved away many years ago and had in fact gone to school with a Larry O’Connell.

Kathy said it shocked young Harry to make this unexpected connection and it upset him to relate Larry’s current health to the man. As they spoke it turned out to be a joyous and poignant occasion for them both.

My Hospice Blog – A spoon full of warm oatmeal, raisins and affection.

[Larry is a hospice patient with end-stage dementia and his wife Kathy cares for him at home.]

A small white poodle met me at the door when I walked across the front porch to visit Larry and Kathy. Kathy was close behind him and unlocked the front door holding Bailey with the other hand.  He calmed down to communicated that he recognized me. As we walked to the kitchen the dog followed respectfully. A quiet addition to a supportive family surrounding Larry.

Kathy told me that Larry hadn’t eaten much of his breakfast today, but seemed to be feeling much better than when I’d seen him the week before. Harry was sitting in his usual place at the head of the kitchen table. He was wiping the table with a dishtowel as he always does.

Since Kathy had mentioned Larry’s lack of appetite, I asked him if he was hungry. He responded, “Well I might be.” Those were the last four words that made sense. After that, he resumed speaking nonsensical phrases as he has every time since I met him three months ago. Kathy told me that Larry seemed to be answering questions occasionally. It’s an eerily pleasant experience to hear some sense emerge from his conversation with himself.

Larry was ill the last time I visited him and it was great to see him looking so well. He had received a haircut and was dressed warmly in a sweater and fleece vest. He looked good.

After he’d surprised us by responding that he was hungry, Kathy took him at his word and warmed the oatmeal for his second breakfast. As he continued his nonsensical conversation she eased a spoon to his lips. His reaction was at first stunned and resistant. Her persistence led to an opening in his lips. A small taste led to a spoon full of warm oatmeal, raisins and affection. I was touched by the experience.