Category Archives: hospice

Last Alarm

Married 60 years. World War II veteran with over 50 airborne sorties. Gas station owner and manager. Assistant Fire Chief for 30 years.

“In the past, as fire fighters began their tour of duty, it was the bell that signaled the beginning of the day’s shift. Throughout the day and night, each alarm was sounded by a bell, which summoned brave fire fighters to fight fires and to place their lives in jeopardy for the good of their fellow citizen. And when the fire was out and the alarm had come to an end, it was the bell that signaled to all the completion of that call.

“To symbolize the devotion that these brave souls had for their duty, a special signal of three rings, three times each, represents the end of our comrades’ duties and that they will be returning to quarters. And so, to those who have given their lives for the good of their fellow man, their tasks completed, their duties well done, to our comrades, their last alarm, they are going home.”

A Celebration of Life
1922 – 2013

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(Notes and photo from the service of a former patient as sent by his daughter to me. Thank you for your kind thought to include me in your memories of your father’s passing. He was a kind and gentle person. Blessings and peace to you and your family.)

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I’m Willing

sudnessI was peed on. It was accidental and, of course, he didn’t mean to do it. It was through the pants. I share this not to be gross or to otherwise be dramatic. I share this because sometimes we forget what it means to be humbled, ashamed, and truly hurting. I know I do. When my friend figured out what had happened, he became very disconcerted.

He can’t remember my name so he calls me, “Sir.” “Sir,” he mumbled, “I am so sorry. I didn’t mean to do that.”

Of course, you didn’t. I understand. And more than the inconvenience brought on by what happened, I am aching terribly for you because you are aching. As a man who has lived a full life, had a long and honest career, has a wonderful and supportive family, and now is approaching the last weeks and days of life, I can only just sense the pain you feel from the ignobility and vulgarity brought on by soiling someone else who was helping you.

I’ve never seen shame like what I saw and sensed in my friend’s face and words. Fortunately, I left later on good terms after things had been worked out. But for the rest of the day, I couldn’t shake the fear, embarrassment, congested voice, and look from a man completely brought low because of total and absolute loss of control.

Jesus said one time to another one brought low, “I am willing” (Luke 5:13).

· 2 Comments. Posted in 250 words, devotional, hospice.

Play Things

As advised by one of our therapists at Hospice, I made a few visitation activity kits for some of my kind patients who suffer from dementia like Alzheimer’s, Parkinson’s, Huntington’s, and others. Different people respond to different stimuli at different times in their condition so some may actively engage whereas others may not be challenged in any way at all. I’m putting these in my bag of goodies that I carry with me when I’m out visiting.

Two of my play bags are made up of 3″ long PVC pipe pieces and associated fittings. These two kits are a Home Depot sort of Lego set, I suppose. The other two kits are stacks of colorful paint swatches of which all have different textures from raspy, sand-papery to smooth and slick.  (I was told that small, square carpet samples work, too. I couldn’t find any but I will keep an eye out. Sounds like a good idea.)

I’ll find out in a few hours if one friend of mine likes my toys or not. Maybe it will give him a few minutes of busyness during our visit. Maybe.

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Two Buddies

2mon1It’s busy today.

First, an old-timer who is very deaf but likes to laugh when he isn’t falling asleep. He is bound to his chair. Amazingly and after a long, productive life, he took up art. He created some of the most beautiful portraits and still lifes that I have ever seen. He enjoyed drawing and coloring from old photos. He created beautiful 8x10s of places he visited during his Navy years a long time ago, portraits of Spanish maidens, portraits of old TV and movie stars, cowboy action pictures, and swooping pictures of fighter jets screaming across the sky. As we look at them together, he can’t remember where the picture is from or who the picture is of but even he thinks the pictures are pretty, darn good.

Second, my jolly friend who greets me as a new friend each time I visit him. He always likes my shirts and wants to talk a bit about my shirts. He prefers stripes over solids. His caregiver prepares for him his favorite snack – peanut butter and banana – on a graham cracker which he insists that I take a bite of. If I make a big to-do out of the taste, he really likes that. He served in northern Africa during WWII as a tail-gunner in an airplane. He flew over 50 sorties during his time.

He comes and goes. One minute he is in Africa talking about kasbahs in Morocco – where he did spend much time – and the next minute he is an infantryman on a Pacific island somewhere.

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Heart Journey 7

Grace Before DyingLastly, another take away from the recent The Heart of the Journey workshop comes from Carol’s discussion on dying. Carol had just had her right knee replaced and this presentation was her first one since returning back to work. She was mostly unable, or at least uncomfortable, standing for long periods of time. She finished up her talk and discussion by sitting down in front of us. She sat and used her hands a great deal.

She became almost animated when talking about the importance of talking to a dying person. “They can probably hear, ” she said as she moved her arms around, “and I don’t know how many family members I have told to keep talking and assure their loved one that things will be alright.” I sensed the voice of experience but I also sensed the voice of a kind woman who very much desired the best for everyone experiencing death.

I’ve been hurting the last week a bit and I think I do have one regret now. When the boys and I were with Regina during the last few moments, the nurses and doctors encouraged us to talk with her. I was tired and confused but I also didn’t know what to say or how to say it. I remember leaning over and touching her hair and cheek and caressing her arm and hand. I think I said something but it must have been so inconsequential that I don’t remember what I said. After that, the boys did something but I don’t remember. It was all so unreal, surreal, and not right.

I wish Carol had been standing by me to prod me to have talked to Regina personally and lovingly. I regret that I did not give Regina my support and my understanding that she needed to go and that all of us would be alright.

Carol told us that she will talk with her patient a great deal if she senses the final moment approaching. She emphasized this twice to make her point. She was moving her arms around and pointing from her seated position as she told us. She talks to her patient at the end!

She leans over and whispers comfortably but quite audibly in the patient’s ear. She says, “You can go now. And if you see an angel’s hand, take hold of it firmly and don’t let go. Go on now!”

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Heart Journey 6

jurneyOne take away for me from my time at The Heart of the Journey workshop came from Randy’s presentation on spirituality. Randy explained how working with others when they are badly hurting is “sacred work,” as he called it. He also said that, truth be told, we aren’t helping others totally for their sake. He explained that there are many who can empathize with the plight of others. He said that there are many who can see the progression that a patient might be going through from hurt to hurt to hurt. There may or may not be resolution. Regardless, the serial nature from poor to bad to worse to extremely dire is something that an empathetic person can see and sense.

So what might this say about an empathetic person? Randy discusses research that shows that, often times, an empathetic person is also working through a progression of events – situation to situation to situation – almost, in some ways, like what a patient is experiencing. The situations may not be as serious, the urgency may be far less, and the stakes may not be as high, but the empathetic person – the caregiver, possibly – is walking something of the same journey as the patient.

Of course, this understanding opens up all kinds of discussion and possibilities. Then who is the real patient? Are we selfish in care-giving if we are doing it for ourselves? Is it good that we are walking in the patient’s shoes? How does a caregiver, when dealing with the cases of terminal patients, not become so overwhelmed that even the caregiver becomes debilitated? How close is too close and how far is too far in care-giving?

I have wanted and am now comfortable to be working with hospice patients. And I will admit – especially after hearing Randy’s presentation – that I, too, am walking a journey of hurt and grief. And somehow in helping others I, maybe, am hoping to find resolution in my own instance.

With God’s help and the patience of patients, I will find out.

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Heart Journey 5

hunds5How to Make Your Volunteer Visits More Meaningful

This session was my final session of the day and it was probably the funnest. I’ll explain.

Annette discussed how best to encourage and receive positive response from those with forms of dementia or cognitive limitations. Many patients with these ailments are in facilities but some are kept at home and taken care of by families. In either location, however, these methods can get a good, solid response from the patient.

Annette is a medical social worker and is also a hospice music therapist. She had the coolest handheld chimes that we all were able to play with. She told us to point a chime at someone across the room and ding it. What would be the response? Would we get a response with a chime gonged back at us? Or would the person be distracted and miss our chime and disregard us? How would we feel about being disregarded? Annette makes an important point with this exercise – be attentive and very engaged when working with a person with dementia.

Annette has a basket with all kinds of fun things it in. She uses each of these things to get positive responses from patients.

1. Paint swatches – let the patient handle and manipulate
2. Paint brush – brush the hand of the patient and very often the patient will brush back
3. Children’s books – patients love to have simple, colorful books read to them
4. Cloth – Annette has many types of cloth with all kinds of textures that patients like to feel
5. Flowers – patients love to feel and arrange colorful, silk flowers
6. Drums – small bongos or even drumming on a table together can bring enjoyment to a patient
7. Junk mail – patients like to sort, handle, and manipulate mail
8. Pipe – patients like to fit PVC pipe and fittings together
9. Pillowcase – or any squares of cloth are used by patients to handle and fold
10. Music – Annette explains that a person remembers songs and music the most from when the individual was 18-25 years old
11. Imagination – patients love imagination games

Annette makes her points through demonstration. To give us a sense of how a person with cognitive limitations might feel, she passes out cut up squares of road atlases. She then tells us to wander around the room and find others who have squares of maps that will fit along up, down, or to the left or right of our map pieces. This, of course, leads to great confusion. Some simply sit down and give up. Others started laying map squares out on the floor and try to piece maps together like jigsaw puzzles. And so forth. Annette makes her point. Feeling lost, confused, or discombobulated can lead to frustration and sometimes anger. As caregivers, we need to be sensitive and kind with our patients.

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Heart Journey 4

hunds4The Spiritual Journey of a Hospice Volunteer

Randy has been a Hospice Chaplain for many years. He said that, as odd it might sound to others, he doesn’t immediately pray for people and open the Bible to read a Bible verse. Randy, then, went on to make the distinction between religion and spirituality. Whereas everyone has some kind of spirituality, not everyone has religion. Religion is important and many draw strength from the rituals and traditions of religion. In no way does not being religious, however, mean that even the most devout atheist can’t have a sense of spirituality.

For example, Randy explained, his atheist friend said he didn’t need Randy to do his funeral and invoke God but Randy’s friend did hope that Randy would speak of him as being a friend, a trusted friend, a loyal friend, and a friend through thick and thin. Undoubtedly, this is a sense of spirituality whether his atheist friend will admit it or not.  Randy, as a Hospice Chaplain, tries to find where a patient or patient family is in their religious or spirituality journey regardless of the terminology that individuals may use.

Randy shared some ideas from a book entitled, “Religion and Health” by Harold Koenig. The book references and discusses clinical work that has been done that shows a very likely relationship between health and spirituality. Simply, Randy presented these three ideas from the book.

1. Nurturing Hope
2. Finding Meaning and Purpose
3. Connecting

Hope can be further broken down into these ideas.

1. What keeps you going?
2. What gets you through the day?
3. Later, what do you expect will happen?

Randy often, he says, uses these three questions to get to the heart of a person’s being. (How would you and I answer the questions?) Once the patient or family has answered these questions, it is a matter of, then, discussing and reinforcing their hopes. Even if death is imminent, having hope can cushion the blow and ease the transition. A hopeful person can die easier than one without, isn’t that true?

Meaning and purpose has to do with how we make sense of “stuff,” as Randy described it. It’s not fair, Randy explained, to avoid questions just because we don’t think there is an answer. We need to jump in and get our hands dirty. Making a meaning and purpose out of whatever it is out there is what it is to live fully and completely.  And once Randy knows the meaning and purpose of a patient’s life, he can begin to encourage and bring honor to the patient’s life.

And finally, we also can’t avoid what is going to happen next. It needs to be thought about and it needs to be discussed. Once we jump through this hoop, we will be better off for it.

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Heart Journey 3

hunds3The Things That Matter Most

There are four things that can be sincerely said that matter the most when living. And dying.

1. “Please forgive me.”
2. “I forgive you.”
3. “Thank you.”
4. “I love you.”

Beth, who has been an RN for over 40 years and a hospice nurse for over 15 years, spoke with us passionately and emotionally about four matters that can be the most important for families and the patient at the patient’s end of life. Beth added a fifth item, too, that can matter.

5. “Good-bye.”

While seeming obvious, Beth tells story after story about times that she would have to intervene and encourage a patient or family to reconcile or, at least, come to some limited peace. Some did reconcile and, seemingly, a patient and family could separate on good terms. But Beth also tells of times when families or friends, due to pride and arrogance, come to the end with nothing resolved. She tells of patients dying angry. “So sad,” she said, “considering that all that needed to be done was for someone to say, ‘I’m sorry.'”

In any relationship, until there is forgiveness there can’t be resolution. Also, forgiveness frees people from the slavery of burdensome relationships. Sometimes, it’s appropriate to ask for forgiveness first and then wait. “It’s like drops of water, ” Beth said. “The first few drops don’t soften the ground. They are absorbed or evaporate. But the more drops, the better chance the ground will soften. And after awhile, the hard dirt will become soft dirt. It becomes rich for planting.” And so it goes with forgiving and being forgiven. Sometimes forgiveness must be administered drip by drip.

Being thankful and telling someone you love them is assurance that the hard times won’t tear the two of you apart. In saying these words, vulnerability is exhibited. More often than not, one person’s vulnerability will open the other person’s heart. Thankfulness and love may not heal wounds, but it can certainly sooth wounds. As Beth said, “It’s ok ‘to be’ instead of ‘to do.'” Men, especially, want “to do” and aren’t usually comfortable “to be.” When death is imminent, “to be” is far more appropriate than “to do.” Expressing love and thankfulness can firm up a person’s “to be” even if there is a history of deep wounding.

Beth echoes the words of others. She says that it is sometimes necessary to give permission to a person to die. Tell the individual that everything will be ok and that it is alright to move on. Say good-bye.

Finally, Beth explains that in the lives of many married couples, there are three instances of absolute sacredness between the two people. “Sacred ground,” Beth called it.

1. Birth of a child.
2. Making love.
3. Sharing death.

We should, as Beth advises, deal with the four things  – and maybe five – that matter most before it is too late.

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Heart Journey 2

hunds2Vigil Volunteering: A Gift at the End of Life’s Journey

Vigil volunteers are trained and can be called upon at any time to literally set the vigil during the assumed last few hours of life. A vigil volunteer has several purposes and goals. First, to bring comfort to the patient and, if needed, to be the patient’s advocate during the final few hours. Second, to bring a sense of dignity to the closing moments of a patient’s life. Maintaining cleanliness, suitable patient attire, appropriate atmosphere, and other conditions may be the responsibility of a volunteer. And third, to continuously evaluate the patient’s condition. This involves, for example, observing patient breathing patterns, skin coloration, temperature, and other physical signs that can readily indicate a patient’s condition.

Carol, a seasoned hospice RN, talked to us frankly and openly about vigil duty. In the spirit of being a non-anxious presence with a dying patient and with the patient’s family, it’s important to remain calm but sensitive, firm but kind, and very aware of the whole situation.

Sometimes, Carol explains, it may be up to the volunteer to give the patient permission to die. Or it may be up to the volunteer to explain to the family that they need to give their loved one permission to pass on. In that touch and hearing are the last senses that a patient will have, it’s important to know that the patient can likely hear what is being said. And if a patient wants to be touched – some do not – then a touch is appropriate. (Not a rubbing, though. For some in various conditions, rubbing and massaging can actually cause distress in a patient.) Perhaps a hand over hand or hand on arm touch is good. Don’t grip or grab. Hearing and touching can communicate many things to a patient in the last moments.

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