Tag Archives: hospice

Grief

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There’s been a lot of death and dying around me lately. I thought I’d share some ideas that you might find useful if you find yourself in a similar position.

First up, for me, grief is better than depression or chronic pain.

Depression is like carrying around a void. The void is always there then, one day, it’s gone. There’s a lot I can do to prevent a downward spiral (into the void) and I’ve gotten better and better at self-management.

Pain: I’ve been fortunate that my longest block of chronic pain was 14 days. It was like carrying a small fire. Over a decade later, I feel gratitude remembering the moment I noticed the pain was gone.

With grief, there is space between the (trembling) waves that arrive, at unpredictable times. I pay attention to the space, it feels great.

At hospice training, they encouraged us to mourn the small losses to prepare ourselves for the inevitable larger ones.

The practice of leaning into small losses will serve you well.

Did you notice the mental setup?

  • Things could be worse
  • I can handle my problems
  • These issues are actually good ones to have – this is a opportunity to practice my coping skills

What I Control

I can’t make myself sleep. I can set an alarm and wake up at the same time, every_single_day.

I don’t control my moment-to-moment neurochemistry. I can exercise in nature and avoid excessive fatigue.

I can’t control my thoughts. I can control:

  • who I spend time with
  • where I spend my time
  • what I say, write and read
  • where I surf on the internet

Control the controllable – accept the rest.

Anger

Grief often manifests as anger.

Anger isn’t all bad – my anger might have nudged me to toss Facebook into the trash and that’s been a plus for 2020. Anger also motivated me to cut my intake of politics, another useful shift.

While I might not control my anger’s arrival, I can influence its departure and notice each time I choose not to act on my anger.

Not acting on anger – there have been some useful wins in that department over the last few months.

The Role of Steady

I went for a long hike on Sunday.

Afterwards, I was looking at the pictures and noticed it was the first time I was smiling, rather than wincing, in a long while. I’m laughing as I type because, all summer long, I couldn’t figure out why my face looked so screwed up in pictures.

Other than walking around in nature, the only other time I’ve noticed feeling really good was after an hour riding easy.

I haven’t done much anaerobic exercise. In the past, I’ve noticed sustained high-intensity exercise isn’t useful for mood management. There’s a brief high followed by a lengthy hangover, when I’m emotionally vulnerable and my will is tapped out.

If you are prone to “euphoria-then-crater” then watch out. I have good systems for keeping myself in check. I never train with faster people when I’m on edge, even a virtual leaderboard can get me into trouble!

How might I know I’m on edge? I could assume it based on the deaths around me.

If external reality doesn’t register then try looking inwards and watch for triggers being triggered…

…anger, sadness, hunger, sugar cravings, sleep pattern changes and/or small cuts that are slow to heal.

The list above is my early-warning system (of impending doom!).

Universal Goods

Keep the good stuff in your life.

  • Shared Experiences
  • Dietary Fiber
  • Nature
  • Music
  • Bright Light
  • Forests
  • Sunrises
  • Connection
  • Stillness

Schedule the good stuff with yourself, your friends and your family.

Focus on doing the good stuff and have faith you will overcome.

A Young 46

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boatingSomewhere beyond your 30th birthday the world might begin to tell you that you look young for your age.

If you say this to me, I might smile and reply, “This is what 46 looks like.”

Likewise, many people say… “but I don’t feel my age.” To them I note, that’s what your age feels like.

They might follow that up with… “I wonder what 50, or even 75, is going to feel like?”

It’s going to feel like right now.

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The practice of accepting my age helps me accept all phases of life…

  • The overtired toddler
  • The anxious teen
  • The sociopathic 20-something
  • The fearful cancer patient
  • The crabby elder
  • The grieving spouse

If we are fortunate to live a long life then we will move through most these phases of experience. At midlife, they surround me.

If we happen to be “young for our age” then it might take a few more years for us to arrive at the phase where we “look old.” But it’s coming.

So I will try to enjoy this day and I will try to accept whatever day you are going through.

And when I am scared, or angry, or tired…

I’ll pause, try not to pass it on and remember to live as best I can.

 

 

What To Do, when you don’t know what to do

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familyA couple weeks ago, I was flying Southwest and the passenger beside me was a bit unhinged. He didn’t seem dangerous, but kept inserting delusional rants into a well-informed discussion of current events.

The rest of the plane was avoiding eye-contact but, with him on the aisle and me in the middle, I didn’t have anywhere to go!

I figured that I’d put my hospice training to work and see what happened…

Six words that can profoundly change your interactions with the world, and through that, the reality that you experience with your day-to-day living.

When I think about my first response to stress, it’s the opposite of the tenets: I know you’re wrong, I want to flee you and I resist you.

My kids make my instincts obvious to me. If your kids are angels then you might have to look into other areas of your life:

  • A dying parent, or patient
  • A chatty stranger on the bus
  • A fellow citizen on the opposite side of an emotional issue
  • A kid yelling FART at my daughter’s birthday party
  • An angry family member

I get a physical signal, a tightening in my chest, before my mind kicks into high gear. The physical sensation is my chance to save myself from falling into past patterns.

These situations leave me feeling scared and unsure what to do. On the Southwest flight, I had to remind myself that the passenger had to get through security so probably didn’t have a gun, or knife, on him. Yes, I was worried that he was going to kill me!

In turn, my fear leads me to close off, or engage by digging into my existing beliefs. Classic flight or fight.

However, if I’m aware of my fears then, I can pause and try to help the other person. When I do this, I’m helping myself because I escape my cycle of fear/closing and/or fear/engaging.

Bearing witness – one of our deepest needs is to be seen, to be acknowledged. Watching how the rest of the world treats the aged, a difficult child or the crazy guy on the Southwest flight… I see that I can do the entire world (or at least my fellow passengers) a favor by acknowledging my seat mate for a little while.

Not knowing – listening to other people speak, particularly odd-ball cranks, there is another voice in my head. The inner voice is constantly disagreeing, challenging, explaining why the other person is wrong.

When I’m quiet enough to hear the other voice, I see it’s not rational. It takes the opposite side to whatever it’s hearing. Much like the initial reaction of my three-year old son!

In a situation that doesn’t matter (like talking to a stranger), play a game where you “don’t know.” You’ll find that it is relaxing to give yourself permission to not-know. In turn, a habit of not-knowing prevents needless conflict with kids, at work and in your marriage.

The “not knowing” exercise is a neat one because, when you see the power of change in areas that don’t matter, you’ll unlock an insight into how the only thing that matters is the little things!

Compassionate action – in the case of my eccentric seat mate, it was easy to see the best thing for everyone was for me to listen, with a mind that didn’t know. In fact, I’ve been doing more and more listening.

If you think about it then I’ll bet you can come up with situations where you had NO IDEA about the right course of action:

  • Friend with cancer
  • Friend who had parent die
  • Friend who had child die
  • Divorcing couple
  • Friend with child with developmental difficulties
  • Depressed friend
  • Friend with substance abuse issues
  • Bankrupt friend

When you don’t know what to do, I hope you remember Joan’s advice.

As for my pal on Southwest, he thanked me for my kindness and scurried off the plane.

He left me with a warm feeling of a job well done.

Be brave.

Micro Courage

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axel_lionHow do I cultivate deep strength and resiliency?

We might describe resiliency as…

  • The capacity to continue despite life’s setbacks
  • The ability to become stronger due to stress (anti-fragility)
  • The strength to handle anything

They sound great, grand and completely unattainable!

I’m going to guide you through how I break it down into something that I can action in my daily living.

Start by flipping it on it’s head, what are the characteristics of the not-resilient? Think of the biggest head case you know…

  • Angry
  • Anxious
  • Depressed

When I think about anger and anxiety, they strike me as cultural expressions of fear. At some level, we see angry men and anxious women as normal. I feel both emotions all the time and they make me less effective.

What to do?

Over the last two years, I’ve been experimenting with micro-courage.

I started by printing up 50 life lessons and highlighting the ones that I wanted to focus on (11, 12, 18, 26, 27, 28, 37, 42, 49). If you come by my office, you’ll see they are taped near my printer…

lifelessonsReflecting on the lessons, I paid particular attention to three:

  • Let your children see you cry
  • Forgive everyone everything
  • Yield

I’d encourage you to find your own (triggers).

The game is to focus your actions on situations at the edge of what you can handle.

Here’s an example:

  • There are lots of homeless folks on the Boulder Creek Bike Path. Some of these folks are violent, others are mentally ill, still others are addicts. As a group, they scare the crap out of me.
  • While I have pals that work with the homeless, I don’t have any clue how to “fix” this problem and often wish the problem would go away (so I don’t have to deal with my inability to deal with it!).
  • Anyhow, there’s one guy that sits by the creek in the 28th St underpass and says good morning to everyone that runs, rides and walks past him. He’s a drinker and can get a little sloppy towards the end of the day.
  • I can’t fix the city’s homeless challenges but I can offer the guy a bit of human connection as I ride by. I look at him, smile and take a breath in. On the face of it, I’m smiling at him but, in reality, I’m staying open to the fear within myself. That’s micro-courage.

The story repeats itself in every part of my life that I want to close off.

I try to “stay open” as many times a day as I can.

The problem can be homelessness, litter, aggression, poor driving, manners, food quality… keep it small, remember to breathe in through your nose with a tiny smile.

Staying open to a small fear, a slight inconvenience, a little bit of sadness… I call it micro-courage.

The habit has been transformative in situations that I used to find overwhelming.

This is what I meant when I wrote that strength comes from staying open to little fears.

Courage is a powerful antidote to fear, anxiety and anger.

Be brave.

True Strength

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g_aqua

One of my coaches, Mark Allen, made the observation that to get our race in order, we need to get our lives in order. Racing, like any other form of stress, can strip away our filters.

Mark’s advice is an example of an athletic lesson with a wide application into everyday living.

We share a desire to be strong. This desire is expressed by building up and adding to one’s self.

  • Adding size through muscles, bulk, heels, boots
  • Adding tension from taking on obligations
  • Adding palmares from victories
  • Adding possessions and external signs of power

I’ve done it all: cowboy boots; academic honors; powerlifting; fancy cars; big houses; jewelry for my wife…

Adding, adding, adding.

The list above is about our external life. Building up is a projection of strength, but it isn’t true strength. I think Mark is pointing us towards something that might become resiliency. An integrated life where we are in harmony with our external projection and OK with all aspects of our experience (strong/weak, happy/sad). This harmony lets us cope with the tests of our races (and lives).

Perhaps you’ve had a situation where you tell yourself to be “strong” but a more accurate description is a fear that our inner storm might show through. Having completely fallen apart a few times, isn’t that big of a deal. I don’t want to make a habit of it but I also don’t want to spend my life holding tight and letting the pressure build within me.

When tired, when grieving, when sick, when stressed… life has a way of stripping our filters away.

But how can we process our inner life?

  • Exercise works well for me – moderate effort, repeated movements
  • Others prefer meditation – cultivating stillness and observing one’s mind
  • Many find the combination of breathing and movement in yoga to be effective
  • Thrill seekers tend towards extreme risk and peak experience – works for them but doesn’t work for the larger goals of my family

If we keep peeling away our layers then we might find that the joke is on us.

Why?

Ultimately, every individual unravels.

It can be terrifying when we bump into this reality. You may have experienced this fear through the death of friends, parents and grandparents.

Ultimately, we might find comfort in defining resiliency in terms of something larger than ourselves – family, legacy, lineage, tradition.

Cultivate courage by staying open towards little fears.

Too Painful To Care

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Monday I wrote about driving energy inwards to improve myself, my marriage, my family.

Related to this lesson, I’ve noticed a habit of avoiding knowledge that conflicts with my core beliefs. This isn’t anything new – human misjudgment is an ever present topic. However, spotting my own misjudgments can make me far more effective.

Being effective, and making better choices, is a more important to me than avoiding change.

A story.

The Tour de France just finished and I didn’t watch any of it. My lack of motivation was unusual and I wondered why.

The legacy of cheating has been to make it too painful to care. In my case, that manifests in a lack of interest in elite sport. In the case of the wider public, there is an element of truth-fatigue. It’s too painful to discover the reality that underlies an obsession with winning.

I’m using sport as an analogy – it’s an easy one for us to feel, and see in others. Choose your favorite sport and you’ll find a tendency to overlook it’s short-comings. If you can’t see it then ask a foreign friend their thoughts (or simply a pal that likes a rival franchise).

The lesson for daily living is deeper.

  • A friend with Alzheimer’s
  • An elder with dementia
  • A sexually abused child
  • A partner that defrauds the community

In these cases, we will feel a strong urge to “give the benefit of the doubt” to whatever causes the least pain. We will default towards inaction and strongly avoid information that compels us to face pain. I feel avoidance strongly in myself – it’s taken many setbacks for me to overcome.

One of the best lessons of hospice is that freedom lies on the other side of fear. Hospice lets me “be with” my fear of death/disease and feel grateful for today. Gratitude is powerful medicine to carry around inside.

Hospice is “easy” – it’s quiet and I’m not expected to solve anything. My home on the other hand… is often loud and I’m in charge. Maintaining serenity in my own house would be transformative for me, my wife and my kids.

So I look for small, daily, opportunities to practice equanimity:

  • Reading a conflicting viewpoint
  • Avoiding “justified” disappointment in a friend
  • Letting a commute unfold without battling my fellow drivers
  • Not playing into a negative emotional pattern with a spouse, child or myself (!)

Overcoming the smallest things, closest to us, can be powerful.

It takes courage to face pain.

Be brave.

Talking About Dementia

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The medical director of the hospice where I volunteer gave a lunchtime presentation on dementia.

An interesting stat she shared was 45% of people 85 or older will show symptoms of dementia. With longer life spans, we’re going to be dealing with more dementia.

The mechanisms for the various types of dementia are not well understood but she cited the following risk factors:

  • Heart disease
  • Stroke
  • Alcohol use
  • Diabetes
  • Family History of Dementia

Like most of us, I have all-of-the-above in my family tree. If I live long enough then it’s likely that I’m going to bump into dementia.

What to do?

  • Consistency and routine in daily living
  • Physical and mental stimulation – stay engaged in your family, in your community, consider part time work
  • Safety – ID bracelets, honest discussions about driving
  • Reminders & Cues – at 45 I have a system in place to manage my days – if you are used to subcontracting all your admin then consider bringing it back in-house before you become part of the elder elderly.

With my grandparents, we used atomic clocks (automatically set for time, day of week, date, month) to help them keep track. Towards the end, I ran my grandmother’s calendar and would handle arrangements for key appointments. They were both in assisted living and my grandmother commented that she would have moved in earlier if it wasn’t for her reluctance to ask for help.

There was an excellent question from the audience… Do my visits have any impact? The doc made the point that the impact of a visit might be not seen until later – when the patient is happier, more content. Don’t assume that low, or no, response means that you’re having no impact.

In my own family, the anticipation of a visit was very positive. I went as far as planning a series of rotating visits more than a year in advance. Each elder needs a champion to marshall caregiving resources.

Likewise, with demented patients, don’t assume that negative behaviors are disease related – the patient could be acting out in response to pain, lack of stimulation or excessive stimulation.

Interesting point for older athletes – the body’s thirst, and hunger, mechanisms dull with age (as well as due to dementia).

The doc shared that artificial feeding of demented patients doesn’t prolong life and changes the nature of death – this is due to complications associated with tube feeding.

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The thought of losing one’s mind is terrifying and the topic of assisted suicide came up. We didn’t have time to explore that issue, but it’s going to be on the 2015 ballot in Colorado.

Given dementia rates in my family, it strikes me as more productive to create a care plan, rather than relying on a quick death, or euthanasia.

I was also left with the following:

Be sure to consider “who’s suffering?” 80% of hospice patients have cancer so my experience with the demented is limited. That said, be sure to look inward when you’re dealing with a family member with dementia. Our minds can torment us more than the disease torments our loved ones.

583My grandfather had advanced dementia and was fully capable of experiencing happiness and joy. He maintained his dignity, if not his memory, until the end of his life.

The death of an elder is an opportunity to make better decisions within the entire family. What did we get right? What would we change? What advance directives are needed for the next generation? for myself? Is my life structured appropriately if I start to experience symptoms of dementia?

IMG_0920Most personally, it strikes me that if I decide to kill myself then I deny my community the opportunity to learn from the end of my life.

As a society, we can learn to live better by taking care of people on the way out. My grandmother was moderately demented at death. She faced death with courage and caring for her was a gift, not a burden.

Watching a loved one unwind from Alzheimer’s is extremely difficult and I hope to have the ability to avoid judging opinions different than my own.

Real people, tough decisions.

More Than Money – Sharing Time

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It’s common to think of volunteering as giving time to a cause.

The most powerful lesson of hospice is the reality that, short of organ donation, I can’t give time to anyone.

What I can do is share time.

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In most of our roles, we can be swapped out. Absent someone to love, this can be a lonely reality. Family roles, particularly parenting children, is an area where it’s more difficult to replace us. Interestingly, these are roles where love dominates. Kids can survive just about anything if they are supported by the knowledge that they are loved.

My family is central to my life’s work. It’s the most direct way I can influence the world. Volunteering is most useful when it makes me a better member of my family. By “better” I mean wise.

Given that I’m married to a woman where “the tone is the message,” I want to spend time in situations that improve my soft skills. My family, and my marriage, doesn’t receive much benefit when I improve my technical knowledge.

Gordo and the Easter BunnyVolunteering puts me in situations where I am truly clueless. For at least a few hours a week, it’s good to realize that I’m clueless! Specific to hospice:

  • there’s no ability to fix anything
  • I’m not empowered to do anything other than serve
  • my best course of action is nearly always “quiet presence”
  • I create a habit of doing what needs to be done
  • I do my work without expectation of being thanked, or paid

If you have young kids, or elderly parents/grandparents, then you may find a lot of similarities with my list and your role.

Most of the friction that I observe in families is due to someone seeking to fix a situation that isn’t their domain, or doesn’t have a solution.

In terms of self-improvement:

  • Volunteering rewards me if I act in a manner completely different than my typical persona. Until I started volunteering, I had never received positive feedback for being a quiet, humble helper.
  • Caring for the sick has an unavoidable benefit of increasing tolerance. You can’t help but change your opinion of people when you’re serving them.
  • Making a habit of good deeds gives me ammunition to take on the voice in my head that tells me that I’m falling short.
  • Pushing my fear envelope is exciting and increases my ability to think clearly in situations that are emotionally charged.
  • Work that challenges the heart leaves me feeling grateful and gratitude is an effective antidote for most everything that ails me.

Whatever your field, when you hear the call, I urge you to follow it.

Goodness through action.

Say What Needs To Be Said

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When I tell people that I volunteer at hospice, I get one of two replies:

  • I could never do that; or
  • It’s a good thing that you’re doing.

Most hospice patients are at home, so the majority of volunteers are working in the field. Of the 300 patients that might be on a current census, only 8-10 will be at the Care Center operated by the group.

My field work falls into the categories of respite, light housekeeping, day trips and errands. Volunteers also help with companionship, comfort touch, meal prep, massage and life review. The field work is usually easy – guidelines limit what a volunteer can do and we’re able to opt out at anytime.

As you’re working solo in the field, it can be a little lonely. The group recognizes that aspect and holds monthly volunteer connection meetings. I haven’t made it to any of these meetings. Being “alone” is a pleasure for me.

In addition to the field work, there’s a Care Center. Patients are admitted to the Care Center for family respite, to get medications sorted (usually pain/nausea/agitation) or, if they don’t want to die at home.

What surprised you? The biggest surprise is how little I’m working with dead people. Before I started, the team emphasized that a lot of living happens on hospice. They were right. 99% of my time is with living patients and I have the freedom to opt out of the 1%.

Are the dying in constant pain? At the bottom of my fear of death lies unknowable and uncontrollable pain. Working at the acute end of hospice care, I was surprised that there wasn’t more suffering. To be clear, I have seen true suffering but it is less than 5% of all patient interactions. Young people dying of cancer and patients dying after being on a feeding tube have been the most emotionally challenging.

Isn’t hospice about giving up? I sense that many families see hospice care as pushing a person towards death. With my grandmother, most of our family (myself included) wasn’t willing to consider hospice (so Nana died at a palliative care ward). Watching the team, what’s emphasized is:

  • Optimizing the time that remains
  • Putting the patient and family in control
  • Ensuring dignity & comfort.

As well, there is a strong network within the grief services team to help the survivors continue living.

Don’t postpone joy. I’ve shared laughter with people that are close to death. This has been a valuable lesson for my unnecessary attachment to being “miserable.” Always stay open to happiness.

Every generation needs a caregiver. Volunteering at a care center is free training in an environment that can be “scary.” It’s only taken three months for my boundaries to be reset. As a parent, there is (now) nothing that my kids can produce that will freak me out. My sick kids, and their diapers, have been put into a better perspective.

Tips to conquer fear. The group does an excellent job managing their volunteers. I noticed:

  • Everything is optional
  • Responsibility for outcome is removed – that lies with the professional team
  • Acceptance of mistakes – I don’t always say the right thing but that’s OK
  • However, clear boundaries are established to prevent serious mistakes (no medical care, no feeding, no giving of medicines).
  • The above show me the difference I can make by helping with “small” things. Listening to a spouse, taking out the trash, sorting laundry, refilling inventory… I’ve experienced deep gratitude from little acts of kindness.

If you feel the calling then follow it. There’s tremendous value to you and your community.

Within the constraint of “do no harm,” say what needs to be said.

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If you’re interested in more reading:

Five Questions from Hospice Training

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As part of my hospice training, we were asked to consider five questions. Considering the questions made me realize that I had done a lot of death awareness work while managing the end of my grandmother’s life.

The hospice training was rich in observations. Two that stuck with me:

  • In response to “when are you going to get over it?” I’m still in pain because my loved one is still dead.
  • We never know the first day of the last year of our life.

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The questions…

What will cause my death and why will this be true?

An interesting one for me – my physical self will die from heart failure, my mental self may die from Alzheimer’s/Progressive Dementia and my spiritual self will live on through my wife, children and writing.

I’m not sure of my cause of death, simply looking at my family tree and guessing.

In terms of life after death, it seems obvious that I’ll continue via every interaction I’ve ever had as well as my writing.

While I can’t touch them, my dead friends and family continue to influence and live inside me. It will always be that way.

Who will be impacted by my death?

I suspect that the longer I live, the greater my circle. However, there is a paradox in that sudden (and unexpected) death can have great impact. I continue to think about my good friend, Stu McGavin.

My friends and family will be impacted – I seek to make their grieving more bearable by letting them know that, notwithstanding how I die, I had a fantastic life.

What do you want your funeral, or memorial, to be like?

I wrote a previous article – invite my friends and family to a memorial service that is set up as a memorial weekend, rather than a funeral. Focus on helping the living process my death and create a schedule of support to my spouse and kids (for two years after my death).

Use the opportunity of my memorial weekend to plan ongoing grieving support for the living.

Start a letter to say goodbye to one of the special people in your life.

Monsy,

I love you very much, thank you for your love and sorry I was grumpy at times, you were perfect for me.

To honor the memory of our love, take one aspect of our relationship… teach it, live it and pass it on.

What is the most important thing for me to do or complete before I die?

Ideally, live long enough to have a positive impact on my kids in a manner that they will remember into adulthood.

If that’s not going to be possible then I’ve left enough writing to point them in the right direction.

Above all else, be kind.