Scope Lock

It’s easy to let short-term news dominate our thinking.

  • Children killed in war
  • Lost airplanes
  • Destroyed airplanes
  • Crashed airplanes

With death, in particular, I was curious.

I asked Google, “How many people die, per day, in the world?”

Google replied, “about 150,000.”

Per DAY.

That helped me put my obsession into context.

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Realizing that my thoughts are largely wasted can create cognitive dissonance.

…but it’s awful

…I need to care (to show I’m a kind person)

I ask myself, ‘is linking worry to goodness effective?’ In my life, worry makes me anxious, not compassionate.

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Here’s what I’ve noticed in myself. There’s a hidden cost to obsession with others.

The more I focus on seeking to change others, the less energy I have to change myself.

What one thing, if it happened, would change everything?

In my case, kindness through daily action in my own house.

Beware of feeding what you want to leave behind. In my case, fear – anger – anxiety.

Talking About Dementia

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.

The Most Beautiful Man In The World – Talking To Kids About Dying

Orion

Did you know that Orion was the most beautiful man in the world? Here’s a link to his story – a personal favorite of mine.

How can I talk about death without freaking out my kids? First up, I don’t start the conversation. However, I don’t avoid it either.

There is a split between older (4-6 years old) and younger preschoolers (2-3 years old) and my approach differs between the kids, as well as how they are feeling when they bring up mortality.

My first conversation about death with my son (2.75 years old) started when he picked up a line that stuck in his head, “David’s Daddy Died.” At two, death doesn’t have meaning and I don’t want him to get locked onto thinking that mom/dad might disappear on him.

From an early age, we’ve taught him that “we will be coming back” when we leave him. Indeed, a key milestone of childhood development is the ability to self-comfort when separate from our parents for 1, 3, 5 and 7 hours. We started this process, gradually, with all our kids as soon as possible.

Axel’s nature means that he experiences less separation anxiety than our other kids. Still, he looked to me for an explanation about “David’s Daddy Died.” Here’s what I do each time…

  • I go down on one knee
  • I look him in the eyes
  • I open my arms for a hug
  • I say, “YOUR Daddy’s right here”
  • I give him a huge hug

Sometimes it takes a couple repeats of… “Your Daddy’s right here” but it always works to bring him to the present, give him reassurance and shift us back to whatever we were doing.

With a 4-6 year old, the conversation is different. My oldest understands death and can have questions about it. She remembers her great-grandmother (who died on this day one year ago) and has asked me about it.

  • What’s death – your body stops working
  • Is she coming back – no, her body is finished
  • Is it like sleeping – no, it’s different
  • Daddy, are you going to die – Sweetie, everything ends
  • How long until you die – likely more than 40 years

And the biggie… Daddy, where will you be when you die?

  • Once again, I look her in the eyes
  • Put my hand over her heart
  • And say, “I will always be with you. Even when I’m not with you, just close your eyes and you will feel me in your heart.”

I then choose a person – perhaps my grandmother, or her mother – and we both put our hands on our hearts and think about that person. “See you can feel the person, even when they aren’t in the room. That’s where you go.”

When they get a little older, I’ll teach them how to spot Orion in the sky and share that he was the most beautiful man in the world.

When they see Orion, I’ll tell them to always remember that I love them.

See me beautiful.

 

Say What Needs To Be Said

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

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.

Memorial Celebration

One of the challenges with funerals is nobody likes them and a lot of people skip them as a point of principle.

By using a mixture of coercion and incentives, we did a great job of changing that with my grandmother’s memorial. Here’s what we did.

All descendants were hosted by the deceased’s estate. We stayed at the same hotel and every adult descendent was invited to bring a friend or partner.

We spread the memorial over three days.

Day one was a family dinner at a private room at an informal restaurant.

Day two (fell on Fathers Day), we did a Dads, kids and teenagers trip to Grouse Mountain. I ran up the Grouse Grind, the rest of the crew took the gondola and we visited the two Grizzlies bears on top. For days we told the kids that we would go on a ‘Bear Hunt.’ They loved it.

As a bonus, we watched the lumberjack show, which mesmerized everyone 4 yrs and up. Bella won a souvenir chair that they chainsaw’ed up as part of the show. On the way home, I managed to get the chair through the US agriculture inspection. A great souvenir for the kids and Monsy.

Day two dinner was adults and teens at a local steakhouse.

Day three was the memorial, with reception. Three speakers at the memorial about 35 minutes long. If I get a chance then I’ll probably cut a video for my own, Andy Kaufman style.

A few of us stayed extra days to sort estate admin and visit. I took Lex, my oldest, to where my great grandmother and grandmother’s ashes were dropped, a beautiful location.

We scheduled the memorial weekend for six weeks after my grandmother’s death. This let her kids recover emotionally and ensured the greatest attendance, with the least amount of disruption to everyone’s lives.

I told Monica that this was a dry run for my own memorial. If mine goes this smoothly then it will be a great event for the family.

We told everyone that all events were optional. This is my approach to everything family related, and reduces feelings of obligation/resentment.

We had a single family member organize all logistics and sort payment. This is particularly appreciated by people close to the deceased, who are often overwhelmed immediately after death.

Eulogy From A Life Well Lived

I spoke at my Nana’s memorial this morning. Highlights…

I feel blessed to have my last grandparent die when I was 44. I learned so much from the experience of helping Joan with her last two years.

Little gestures mean a lot, particularly to the elderly – Joan gave a lot to her community, and the community gave it back when she needed it. To honor her memory, I’ve signed up to volunteer at our local hospice.

In life, everyone has a simple thing that makes them very happy. Search for that thing, when you find it, pay attention to it. Joan’s thing was telephone calls – she loved them. To create a double-whammy, we also paid her phone bill.

Favorite Memory – we used to tease her that she’d put the broccoli on the stove at the same time she’d put the roast in the oven.

Life Lessonwe can change late in life. Joan quit smoking in her 60s. More importantly, she changed her attitude in her 60s and 70s. This transformation to acceptance served her very well in aging, and in death. She was joking with all of us two days before she died (at 88).

Favorite Memory – helping her clean out her kitchen and finding canned goods older than me!

Joan loved her Dad, Wren. She was a reserved woman and the closest that I saw her to sadness was thinking about his early death. The love she held for her father has made me a better man, and a better father to my children. I’m the bridge from Joan to her great-grandkids (five total, three in my family with Monica).

Favorite Memory – Joan would track the price of gas all over the city. She always knew the best location and day to purchase.

Joan’s Values:

  • Self Sufficiency – she prided herself on independence and not being a burden on anyone
  • Humor – she had a great sense of humor, especially in private – she enjoyed many jokes, even on her death bed
  • Discretion – she was reserved
  • Family – her home and her support was always welcoming to family – she helped many people without any expectation of return

Favorite Memory – she loved to track the USD:CAD exchange rate to the 1/100th of a cent. It was a BIG moment for her when we hit par. “You know dear, we’re at PAR, now.”

What did Joan teach us about aging:

  • Growing old is unpleasant (and isn’t made better by complaining)
  • She aged, and died, very well
  • Why?
  • She came to accept life – a particular watershed moment was her 75th birthday, she felt grateful for the party that was organized

Two years ago, she told me that she had had a wonderful life and had been able to achieve everything she wanted. At 44, I try to bring this attitude of gratitude to my own home.

How do we make peace with time? Joan taught me:

  • Be open to friends and family
  • Contribute locally
  • Live within our means

I love you, Nana.

Getting My Affairs In Order

In March, I shared a family legal structure. Even with that structure in place, there will be significant admin for your family to sort when you pass. This admin will hit your spouse and children when they are least equipped to deal with it.

Given that people are useless at administration when they are grieving, how can you make life easier for your family? 

Simplify possessions, portfolios and personal legal structure. Almost everything we have will be sold, donated or disposed. Streamlining yourself, in advance, is an act of love that will save your kids days and weeks of effort. If you have mementos that are special to you then sit down your kids, and grandkids, for storytime. Use the pictures and personal effects to make your history, their history. Without this effort, your memories will end with your passing. Your kids will treasure their memories when you pass. 

Brief your successor(s) – consider the roles that you play in your family (financial, administrative, emotional), who’s backing you up? Do they know it? Have you explained their role to them? Do your successor(s) have written plans and checklists to work through? It’s far easier to update an existing plan than to create one when you’re under the stress of an unexpected event.

Establish A Joint Operating Account – Start with a joint operating account with your spouse. As you age, consider a joint account with your most reliable adult child. In my family, at least half of us have bodies that outlive our minds. It’s very likely that I’ll need to hand off to one of my kids at some stage.

Consider Medical and Financial Powers of Attorney – These roles require different skill sets – consider splitting. Have an honest conversation with the individual you’re considering to help you out. Are they willing, and able, to fulfil their role.

Consider Probate – If you died today then would your estate require probate? What are the costs, and disclosure requirements, associated with probate in your locale? Are you OK with that? What are the steps necessary to avoid probate?

Clear Instructions – make your Will crystal clear, simple and easily available when you pass. Brief your executor, and personal representative, well in advance.

Proactive Disclosure – Hold meetings with your financial/admin attorney, your medical representative and your spouse. I’m 44 and have a quarterly state-of-the-family meeting with my succession team. Not because I expect to die anytime soon, rather as an insurance policy to lessen the blow on my loved ones if I’m taken out at short notice.

Sorting the above doesn’t make coping with death easy, but it does go a long way towards reducing the chance that your survivors are overwhelmed, or ripped off.

Be very careful with financial powers of attorney and signing rights over your assets. I’ve seen fraud within families and between lifelong friends. Establish structures that limit the ability to one corrupt individual to hurt your family. Remember that even competent people make mistakes.

When you think you’ve got everything sorted – try explaining it to a trusted friend. Once you’ve explained it to your pal, have them explain it back to you. I guarantee you’ll learn something.

Three tips for estate planning:

  1. Say what needs to be said, today.
  2. Be a hero now, not when you pass.
  3. You’ll get the greatest satisfaction from sharing gifts (in person) with the people you love.

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Denver Bar Association: what to do when someone dies

Colorado Bar Association: personal representative and trustee under probate

A Death in the Family

I spend my working life with high achievers that are used to being in control. These individuals are used to getting stuff done and sorting things out. They are the doers of our society.

Because death can appear to lack a solution, it is a challenge to a high achiever’s identity. Overlay the reality, that our own time is coming, and it’s not surprising that we feel overwhelmed.

Interestingly, there’s no quicker way to pull the energy out of a room, or conversation, than talking about my experiences with death. It’s one of the strongest, deepest emotional triggers (for avoidance) that we have. Even my pals that are doctors and chaplains, become visibly uncomfortable with these topics – the well-adjusted have subtle tells, but they remain. We share a deep avoidance of the topic of death.

Here’s what I learned over the last few months of watching a family cope with the death of a parent.

Death strips our filters away – the dying person as well as their closest family. This can be terrifying to consider, the world seeing our minds laid bare. We have nothing to fear because our fears are universal.

I found it inspirational – because what lay beneath all the filters was a very accepting person. A life, well lived, brings a sense of peace at the end.

Next I was grateful, because I have the time to continue to sort myself out. I can offer my children a powerful gift by demonstrating how to cope when it’s their turn.

With the curtains pulled back, and facing an ultimate source of power, everyone trended towards their automatic, and deepest, programming.

Death, and dying, are powerful – they aren’t good, bad, angry, scared, fearful, or anything else – the emotional interpretation of their power comes from within us. If we can pause, even briefly, to consider what/how we are feeling, there is a tremendous opportunity for learning.

For example, I learned that my deepest emotional response is “flight.” Faced with the power of dying, pressure would build inside my body and I’d have an overwhelming urge to ride my bike uphill to release that energy.

By the way, I followed my urge to ride over the last two weeks and it was deeply therapeutic. I gave a spontaneous solo eulogy to myself every ride for week.

In my emotional life, breakdown, sadness, fear and anger are signs of resistance, an internal blockage that needs to be opened. Exercise provides me with a physical mantra to open myself and release energy before it solidifies into emotions.

Another member of my family lives cerebrally. She found that pressure would build in her head. To process, and release, her energy – she engaged her mind on a family-related history project.

Every member of the immediate family found their capacity to think, and remember, was impaired. For some this lasted for weeks, others for days. Don’t expect to get anything achieved when you’re grieving. Ask for help.

To become an outstanding athlete, I needed to process my emotional history. Or perhaps it was processing my emotional history that’s enabled me to deepen my capacity for success. I’ll never know for sure, but I’m grateful for the lessons of sport.

Many high achievers use performance to mask, rather than cope with, their emotional histories. If that’s the case then you’ll find a unique opportunity for growth as you move through the process of grieving.

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Recommended reading: http://www.trucare.org/education/recommended-reading

Grannie’s Bystander Problem

I played a central role in managing my grandmother’s care over the last two years. Here are some thoughts that might help you and your siblings.

It’s better for everyone to have ‘the conversation’ before it is required. Most families lack plans, or skills, to deal with their elders’ passing.

A – each elderly person needs a champion. By champion, I mean a leader, not an owner, of a situation.

B – the champion’s role is to co-ordinate care by the family, and outsiders. In our family, reflecting different skills, we split the financial/admin support from the emotional/medical support. This split works very well.

C – be careful not to ‘own’ an elder. Use caution with commitments that might impair your ability to meet the needs of your spouse and kids. Don’t become a casualty, emotionally or financially.

The highest achieving, or most emotionally giving, can be tempted to move the elder into their house. This can be great, or a disaster, we’ve seen both outcomes in our family. Often from the same situation, but different perspectives (grand kids vs spouse).

D – be open with what needs to be done and ask everyone to contribute a little bit.

E – geographical spread costs time and money. My family lives all over the world, there is a large, mostly hidden, potential liability due to our spread.

Because the problems of the elderly (health, loneliness, death) are difficult to resolve, many people don’t bother to try. That’s a shame because you’ll never regret a small kindness but you might regret not making any effort at all.

A friend shared with me that, in death, she didn’t have anything to offer her parent. The earlier relationship had been unhealthy and she’d decided to end the cycle of pain in her family. She was getting push back from her family to engage but couldn’t bring herself to do something that lacked authenticity.

It reminded me that sometimes our role might be to take the blame as others deal with their grief. Being a father gives me many opportunities to chose what I think is best, rather than expedient.

As a parent, I hope to teach my kids to improve a little bit on the legacy I pass to them.

With powerful emotions, write down how you’re feeling. Time will reshape your memory and you may want a record of why you made your decisions, especially if you have a habit of regret.

The following were central lessons:

As the end nears, small kindnesses have large impacts.

Everyone contributes based on their own capacity.

Don’t keep score.

Your community likely has resources to help you manage. Ask for help.

Our actions train our families to manage our own decline.

Preserve dignity as long as possible.