My Hospice Blog — Over the next hour, the sheet’s rise and fall began to slow.

[Larry was a hospice patient with end-stage dementia. His wife Kathy cared for him at home.]

I met Larry over two and a half years ago when VNA hospice sent me to his home. Unfortunately, we never actually met each other. His dementia was so advanced that he never seemed to recognize anyone. He passed away two days ago and his funeral was today.

Last Saturday, I went to Larry’s home to sit with him while Kathy went to Mass at 4pm. He looked very different today from the last time I saw him. He has been bedridden since Kathy noticed that bed sores had appeared on his heels.

Last Saturday was different, because Larry had not gotten out of bed and was not eating or drinking.

When I arrived, Kathy greeted me at the door and said Larry was resting comfortably and was not in pain. She asked if I wanted a cup of tea. I said I would love a cup later and she said, lets go up to see Larry.

He lay in a hospital bed in a guest room upstairs. He was propped up and his head was laying back. He was asleep. Kathy said that it was becoming difficult to feed him because he rarely opened his eyes. His brain was shutting down and we both knew it.

Over the next hour I sat with Larry while Kathy was at church. I sat across from him as I had so many times when he was in his wheelchair downstairs. He was almost always in the kitchen.

Today, his eyes were closed and his mouth was wide open. As he breathed, the sheets would rise and fall. The movement was barely perceptible. Several times his breathing began to slow and I wondered if he would start again.

I was seeing him for the last time. The next time was today at the funeral home. He died two days after I sat with him.

Today at the funeral I sat alone and remembered all of the great stories I’d heard about his life.

[The story that touched me most profoundly was about a collection of memories in a box.

My Hospice Blog — Shut Up!

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

When I visited with Kathy and Larry yesterday, he was sitting in their bright, sunny living room. The snow banks were melting outside and Larry was in his wheelchair with his back to the window. Light streaming in the windows reflected on the mirror over the fireplace.

As Kathy and I talked at length about her family, she got progressively excited relating new stories and old memories. As her voice grew elevated, Larry abruptly said “shut up now.”

I was startled, but Kathy told me that if anyone speaks in a loud tone of voice, he says “shut up.”

[OK. Now to recap for those who are new to this blog.]

Larry has not spoken to anyone for several years. He spends his days talking to himself in nonsensical phrases. He doesn’t seem to understand what is said to him and he typically makes no response.

When he does respond, I can’t help but wonder what he really understands.

My Hospice Blog — Valentine’s Day 1998

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

When I visited Larry on the day after Valentine’s Day, I found him at the kitchen table as usual. I was there to sit with him while Kathy went to church. Since there was a snow storm coming, she wanted to go to Mass on Saturday evening instead of Sunday morning.

As almost every week since I’ve known Larry, he was sitting in his wheelchair at the head of the table. The center of the table typically has a bowl of fruit and wooden holder containing paper napkins. On Saturday there was also a plate of cupcakes with chocolate icing and a chocolate heart in red foil on top of each. There were also two cards.

The cards were clearly older with yellowing pages and ragged edges.

Kathy told me that she and Larry decided that they loved the Valentine’s cards they had given each other so much, why buy new ones. Each year since 1998 they exchanged the same cards. When Larry’s Alzheimer’s disease advanced to the point that he didn’t know her anymore, she still brought out the cards each year.

The cover of one card has two bears sitting on a log holding hands (paws) and kissing. I was surprised to realize that it was a musical card playing an instrumental version of “Love me Tender” by Elvis.

I don’t know what else to say.

My Hospice Blog — Collection of Memories in a Box

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

When I visited Larry last weekend, Kathy left for church and so I sat with him while she was away. Not long after she left her daughter came down to check on him. She’s a single mother who lives upstairs with her only child. She told me a poignant story about the decline in Larry’s memory and how it affected her daughter.

The granddaughter is named Marie and she was born ten years ago after Larry had retired. I was told that he took great joy in holding Marie when she was very young. When he was holding her he was comfortable in the present. He would hold her for hours not worrying about what he needed to remember and cherishing the moments.

When Marie got older she would follow Larry as he worked in the yard. In his retirement, he spent much of his time planting and caring for flowers. He was always digging in the soil adding new plants and dividing some to share.

As young children will, Marie would find an interesting rock and bring it to Larry. When she delivered the latest treasure she had discovered, Larry would hold it in his hands and study it as if it was a precious jewel. He would talk with Marie at length about what made it special and how much he valued her discovery. Then she would go back to her search only to find another stone and take that new find to him. She loved the attention and they spent hours together.

Years passed and Marie grew up at the same time Larry declined. They were always close, but she was busy with school and music and didn’t spend much time with him. Eventually Larry’s dementia took over and he no longer communicated with her or anyone. Over the first ten years of her life he became the man I see sitting in the wheelchair talking to himself.

I learned that about a year ago the hot water tank in the basement began to leak and some of the things stored near by were damaged. As Kathy and the family sorted through the water damaged items, someone discovered an old shoe box on a shelf. When opened they discovered a large number of small objects wrapped in white paper. To everyone’s surprise, each object was one of the small stones Marie had given to Larry when they worked in the yard. He had used the pages of his daily calendar to write an observation and then carefully wrap each stone to store away.

When Marie was told about the discovery, she was shocked. She was speechless and stared into the box for several minutes in silence. She couldn’t believe that Larry had so treasured the small gifts that he wanted to preserve them and their memories. He collected over fifty stones and preserved each one with the date and his thoughts at the time.

Most patients with Harry’s advanced stage of dementia live in nursing homes where their families visit on occasion. Once the patient’s memory is gone and they can no longer communicate or care for themselves, they decline very quickly. Larry’s situation is totally the opposite because of the way his family cares for him. The story speaks for itself.

My Hospice Blog — Larry’s Birthday Wish

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

When I visited Larry yesterday I learned that his birthday had been celebrated with a cake and several visitors. Larry also received a touching voicemail message from his grandson.

Kathy explained that Thomas (the grandson) followed Larry around as a child and as he grew they  remained close friends. As a very small child Thomas would follow him around the yard as Larry tended his plants.

Kathy related one story about how Thomas was left in Harry’s care as everyone went away to run errands. Harry noticed a smell from his small companion’s diaper. Harry looked around and could not find a diaper. At that time disposable diapers were not widely used and there were none to be found in the house. Harry had noticed that the water from the garden hose was warm from sitting in the sun. He decided to wash the young boy’s bum with clean, warm water from the hose. Being the creative sort and seeing no other option, he made a diaper from one of his own clean undershirts and sent Thomas on his way. As his mother and grandmother returned from shopping there were howls of laughter when they saw Thomas sitting in the grass wearing his make-shift undershirt diaper.

The story of affection came full circle this week when young Thomas called to leave Harry a birthday wish. Thomas has left home and is now in college studying international affairs. The message was a birthday wish followed by Thomas singing one of Harry’s favorite songs.

Harry’s dementia has progressed to the point that he’s not aware of the heart-felt gesture. Even so, we played the birthday song for him to hear. Harry displayed no reaction, but Kathy and I had tears in our eyes.

I continue to be impressed by the care and affection shown to Harry by family and friends. I did not know him when he was in his prime, but he must have been a beloved soul.

My Hospice Blog — Spitting Watermelon Seeds

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

Larry has been my hospice patient for just over a year and it’s been an interesting experience every time I’ve seen him. My role as a hospice volunteer is to offer companionship to the patient and respite to their family. In Larry’s case respite for his wife is my primary responsibility.

Larry loves to eat watermelon. Kathy loves to feed him because it offers needed hydration. It’s difficult to get him to drink water from a cup and there’s always the danger that he will inhale the drink and begin choking.

Larry’s dementia has progressed to the point that he has very little communication with those around him. He sits and talks to himself. Today I sat and talked to Kathy while she prepared to fed Harry a bowl of watermelon. Larry still chews and swallows normally. That’s not always the case with patients in Harry’s condition and Kathy is the one who feeds him most of his meals. She’s extremely sensitive to any change.

The watermelon was cut in small bites and when Kathy put it to his lips he opens his mouth. Larry has no vision but he appears to remember the fragrance and likes the taste. Kathy told me it has always been a favorite of his.

The unusual thing about today was that Larry began to spit out the seeds. It was seedless watermelon so the seeds that remained were very small and soft. As Kathy and I talked about the past week, Harry would begin chewing and then spit. At first we were surprised and then it became more frequent. I told Kathy not to be embarrassed, but I could see the shock on her face. After every bite was swallowed, he would spit out a seed. We looked at each other and laughed as we took turns wiping the seeds from the table cloth. Larry would randomly spit to either side of the table. We event began to wager on which side was next. I must say we both laughed out loud. What a strange and delightful experience.

Unfortunately, the watermelon ran out and I had to leave for an appointment. What a treat.

My Hospice Blog — Always the same. Totally Improv.

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

I haven’t written a new post for a couple of months because nothing much has changed in Larry’s life.  In fact, not much has changed since I’ve known him. This is officially the first anniversary of his introduction to hospice care and my introduction to his family.

Larry’s health is good and his quality of life has not changed since I met him. I’ve visited Larry at least once a week for over twelve months. Always at his home because he never leaves home. When I visit he sits in a wheel chair at the kitchen table. He spends most of his time talking to himself or whistling or sitting silently. When it’s 90 outside and he’s hot, he’s silent and nearly motionless. When he’s active he holds a dishtowel in his right hand and wipes the table constantly. Making slow rotations like a bartender in the movies.

When I arrive for a visit, I always put my arm around Larry’s shoulder and I bend down to say “How are you Larry?” he responds “Well I think….” and then he begins talking to himself again. He doesn’t speak in sentences and he doesn’t whistle music. That’s not to say his whistling isn’t musical, it’s just that he’s totally improv.

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.