LESSONS FROM HOSPICE: Liar, Liar…

There’s a big difference between the “lies” that heal, and the truths that hurt.

I have a friend who took care of her husband, who had Alzheimer’s, until he died a year ago. It was very hard for her, especially since both of them worked closely with families who experience loss, death, and devastation.

You can gain a lot of insight working with others on this hard, sometimes lonely, journey at the end of life. But you don’t get a free pass just because you’ve witnessed this journey with others. In fact, it seems like it’s even harder, if you’re ‘in the field’, when it happens to you. Maybe we feel like we should know how to ‘do it perfectly’. But when it happens to us, there’s no such thing as ‘doing it perfectly’. There is just ‘getting through’.

Caring for a person with Alzheimers, and other cognitive issues, is especially difficult. Their view of the world, their resources for dealing with it, are changed drastically. The old method was to constantly fight for reality–yours! Maybe, with enough reinforcement, we could ‘force’ them back into our world. Tell them the same thing over and over and over, and eventually, they’ll get it.

Sadly, this approach does not work. In fact, it creates more stress, more anxiety, in the person.  People often still have an emotional/social self–they sense they are ‘doing it wrong’. When they are constantly reminded of this, things go downhill pretty fast. Anxiety leads to agitation, anger, and even agression.

Current strategy is to ‘go along’ with the client. “I’m supposed to be at work!” they exclaim. “I have to get ready!” You may choose to ‘go along’–“Sure! But we have to have breakfast first.” “Or, “Sure, we could do that! What would you like to wear to work today? Let’s get dressed. OH…you might want to take a shower first!” “Or you gently ‘remind’ them that today is a work holiday. So maybe they’d like to go for a drive in the country instead?”

This can be difficult, though, because it doesn’t feel ‘honest’. The hardest part of caring for clients with cognitive issues? “The lies!” my friend exclaimed. “Our relationship was based on trust, and respect, and honesty. And then, to keep him calm and at ease, I had to lie to him, over and over and over, every single day!” She felt she had worn away the last thing that connected them, by lying to him.

The best advice I can share with you today is to point you to a person who embraced this situation himself, and wrote about it.  For insight into these strategies, I highly recommend the website Alzheimer’s Reading Room. Bob DeMarco went there and back again, into the world of Alzheimer’s while caring for his mother.

His insights are filled with integrity, insight, and simplicity. He stresses that to create a new, rich relationship with your loved one living with cognitive issues, you need to go to their world. We need to look at their point of view, and understand where they’re coming from. The person we used to know is changed, due to major changes in their brain and cognition. We cannot hold them to who they once were, to what they could have been. We have to work with who they are, and what they’re doing now.

We tend to think in terms of absolutes: Good and evil. Right and wrong. Truth and lies. Even the grey areas of white lies and fibs can feel overwhelming when you have to practice it over and over, day after day after day.

Alzheimer’s is not a world of absolutes. For a person in this world, it is a place of ever-changing reality, as memories fade, as dreams flood into waking time, as it gets harder and harder to understand what’s what.

DeMarco says, over and over: You have to go to their world. You have to see through their eyes, understand through their experience, work with their fears and anxiety.

I was going to go into a big long spiel about lying vs. going to Alzheimer’s world, and kids and Santa Claus/Easter Bunny/Flying Spaghetti Monster, but there’s just this: When we talk to kids about death and dying, sickness, bad accidents, we frame it so it meets them where they are. A four-year-old grieving for a dead pet needs something different than a 12-year-old, etc. The same when we are caring for/living with/working with people with cognitive issues.

A friend told me how she struggled what to tell her dad, who had dementia, about her mom/his wife, who had just died. “When he asks where she is, do I tell him the truth”, she agonized. “Then he reels with the shock and weeps. Two hours later, he asks me again. I don’t want to lie, but telling him the truth is like torturing him with harsh sorrow, over and over, and over again. It’s new to him every time.”

Eventually, when he asked, she told him she (her mom, his wife) was ‘away’. No, no one was sure just when she’d be back, but she was okay, and sent her love, and they would see her again ‘in awhile’. This reassured him, until the next time he asked.

This went on for months, until one day, he asked her hesitantly, “I have a feeling Mom isn’t coming back. Am I right?” She then told him yes, but again, gently, simply agreeing. And reassuring him that she (the mom) was okay, they would be okay, and that she (the daughter) was there for him. He wept, but was not devastated. The question faded gradually away.

Understand they can no longer be in our world, but we can visit them in theirs. Have compassion. Understand there is a difference between lying to manipulate, to gain something you don’t deserve, or to avoid consequences of your actions–and meeting them where they are, with love, with patience, with respect and kindness, in their world.

If your religion believes that God would never give someone more hardship than they can handle, then understand a person with dementia cannot handle hardship like they used to. Accommodate them.

It’s not easy–it never is.  The role of the caregiver can be lonely, and already so very, very hard. So please don’t agonize over having to ‘lie’. What you are really doing is not hurting someone  who cannot understand, or process, the hurt. The ‘lie’ you tell to create peace in someone’s heart who has no way to heal–to avoid giving them pain they cannot protect themselves from–that ‘lie’ is actually kind, compassionate, and healing.

So be kind to yourself, too. The only people who would judge you, just don’t know. (Yet.) The ones who know? Believe me, they understand. And they are supporting you in spirit, every step of the way.

CLEAR YOUR CACHE

TMI can overwhelm. Start where you are, let go of what doesn’t serve you anymore, and take one step forward–today!

Today’s column from Fine Art Views:

Clear Your Cache!

LOST WALLET

What if your ‘horrbile, no-good, very bad day’ is simply protecting you from something much, much worse?

Happy Holidays postmar, careful writing, and the contents of my lost wallet, less the chunk of cash. What do YOU think?

A week ago today, I had one of the most frustrating days I’ve had in ages.

I drove down to Oakland, California, in the East Bay, to meet a friend for lunch and see street- and mural-artist Bud Snow’s show in a local gallery there.

I stress out driving in the Bay area–so much traffic, many expressways and interchanges, I usually realize I’m a little low on gas on the way down (which was true this trip, too), and I obsess about finding a place to park. (Worse than Boston, if you can believe it.) In fact, there’s a funky gas station right off Hwy. 101 on the way down. But traffic was heavy, the line was long, and I didn’t want to be late. “I’ll fill up on the way back,” I thought to myself.

But I made the trip in good time, and found a parking space right in front of the restaurant. I met my friend, we found two seats in the crowded restaurant, and had a terrific meal. I thought, “Wow! It’s my lucky day!” I paid the tab, and we left.

My luck soon turned.

We were going to walk to the show, but I decided to drive us there instead. We found another good parking space, and I pulled out my wallet to get the parking. (My friend beat me to the punch, though.)

That’s when I realized my wallet was missing.

The next couple hours were spent calling the restaurant, retracing our steps, looking under the car that had taken my former parking space, searching my car (always an adventure), and then calling credit card companies and banks. (Jon said, “Why don’t you just put a hold on them? Maybe you’ll find the wallet!” My friend said tersely, “It’s Oakland. Cancel the cards.) Flustered, overwhelmed, unable to rally my good cheer, I decided to skip the show and head home, hoping to get a jump on rush hour traffic. Halfway home, I wish I hadn’t refused my friend’s offer of gas money.

The whole way home, I fretted about gas and the loss of a sizeable chunk of cash in my wallet. And the traffic was UNBELIEVABLE. Almost the entire way home, I rarely drove more than 20 mph for over 60 miles. The one-hour trip without traffic had taken me over three hours. And I still had to deal with more phone calls when I got home. (Jon didn’t realize we could ask for expedited service. Especially with the holiday weekend, we’re still waiting for our main household credit card to arrive.)

And then, on Monday, after I’d spent several hours getting my driver’s licence replaced, a little package appeared in the mail, postdated the Saturday right after New Year’s Day.

I knew instantly what it was. Sure enough, it held my credit cards, my driver’s license, and my health insurance ID.

I was instantly awash with a multitude of emotions.

Anger–did the person really think I would not cancel those credit cards immediately? What was the point? Why couldn’t they have sent the driver’s licence back sooner?

Then curiosity: Did they try to use the cards, and they were already cancelled. So they felt bad and returned them. A thief with a conscience?

Then, humility. How did I know it was the person who helped themselves to my wallet? Maybe someone stripped the contents, took the money, and dumped the cards? Perhaps someone had simply found the cards, and decided to send them back to me.

The handwriting was extremely careful–did the person deliberately disguise their handwriting, so it could never be traced back to them? Or was it someone young, who didn’t learn cursive? Or…was it an elderly person, or a person whose first language is not English? (You can see the wavering strokes…) No return address, of course. No note, my husband remarked. Did they simply not want me to think they were the one who’d taken the money? (As Jon always says, no good deed goes unpunished. He also liked the ‘Happy Holidays!’ postmark, while I noticed the ‘Forever’ postage stamps from 2012. Two of them, too, to make sure it would make it through the mail.)

Jon posted about this on Facebook. The comments were varied. “Mediocre Samaritan” was our favorite. (Update at bottom.)

On Tuesday, I took my car in for a maintenance check. And the report came back with disturbing news. My car needed new tires. How soon? I asked. As soon as possible, he said. Why?? A 2006 Scion we bought just before we moved here, they were probably the original tires. There were severe cracks in the sidewalls.  We’d forgotten to check our tire pressure, and the tires were underinflated until a few days before. That could have affected very old tires badly. “You’ll be okay for a few days on surface roads,” the guy said. “But stay off the expressways. If those tires were to overheat, one could explode, and you’d lose control of the car.”

Stay off the expressways….

What if my day in Oakland had passed without incident? What if I had filled my tanks on the way down? What if there hadn’t been rush-hour traffic clogging the expressway for hours?  What if I hadn’t been forced to drive slowly, and carefully, all the way home?

My friend Mary Ellen (who was the friend involved) put it best in her Facebook comment:

All our comments are our own lens on the world. I choose to believe there is good in most people and someone found it and returned it. There is no way to test that. Another might see some nefarious plot. It’s like a rorschach.

I have the resources to restore my life back to normal (such as that is!) I thought back about the money in my wallet. On impulse, the day before my trip, I’d  stuffed a $20 into the collection pot for a charity outside a supermarket. It seemed excessive, but it felt like the right thing to do. I’m glad that was my last ‘purchase’.

Maybe, maybe, maybe, the rest of my money was a blessing in someone else’s life. I hope so.

What might have happened if I’d driven home at top speed, on uncrowded roads?

I heard the phrase, “Protection through rejection…” a few months ago. I instantly recognized the sentiment: Sometimes, the times we didn’t get what we wanted–the gig we didn’t get, the relationship that didn’t work out, the opportunity that fizzled–those “rejections” are actually protecting us, directly or indirectly, from something else.

There is simply no way to know the true story, nor the whole story. But the point is, it doesn’t matter.

And it doesn’t matter whether we believe we are under special consideration from a superior being, or fate, or whether we make our way through utter randomness in the universe. It doesn’t matter.

What matters is the lens we choose. What matters is the story we choose to tell ourselves. The story that marks our view of the world, our view of this life, and our place in it.

Me? I’m happy to be safely at home, my life approaching normal again. Happy with the story I chose to tell today.

Update When I posted this article on Facebook, several people shared their own experiences, including a friend who routinely used to find lost wallets and cards, and always returned the contents to their rightful owner. This is what I wanted to believe, and now I have the proof. Thank you, Barbe SaintJohn for sharing your story. Faith is knowing what to believe, hope is wanting to believe. You have solidified my faith.

Second update I was telling this story to two friends in Atlas Coffee recently, and they both told me they’d been driving on a freeway when their tire blew up. “It was like an explosion!” Ray said. “I was doin’ 70. Thought I was gonna die.” ” Closest I’ve ever come to dying,” said Mike. Thank you, lost wallet. Thank you.

LESSONS FROM HOSPICE: Nobody Dies Alone (Not)

Recently California passed  Right to Die legislation, allowing the terminally-ill to seek their physician’s assistance in committing suicide.

Many people have valid arguments against this legislation. Almost everyone I’ve met who works in hospice and palliative care are dismayed. Too often, hospice is not called into such a situation until the last minute. Most hospice clients receive care for less than 14 days. More than half of those clients, less than a week. Many, if not most, of the issues that Right to Die legislation addresses, could be alleviated by hospice and palliative care, including patient comfort and support. Research shows that clients in hospice care live longer and suffer less than those in standard care.

But that’s not what moved me to write today. There was a letter to the editor from a grieving person, who provided round-the-clock care for their spouse until the very end. The person said hospice can’t do what they did–sit with their spouse until their loved one died.

Which, believe it or not, is not always a good thing.

Somehow, being with someone while they die has been synonymous with ‘best practice’. “Nobody dies alone!” And when people can’t be there for that final moment, they often feel a sense of failure and guilt.

Meanwhile, those of us who are involved in hospice care, notice something totally different. Something that we noticed in almost all our cases….

Most people die alone. And though obviously we cannot know what someone’s final thoughts are, it sure looks like their choice.

We’re often called on for what we call a ‘vigil’. There’s no one to sit with the person who seems to be actively dying–family members are out of state, or can’t be there 24/7. Volunteers sit with the client in shifts. But we never provide round-the-clock care. And that’s a good thing, because the truth is, sometimes people need that time to themselves, to choose when they would die.

Read that again: The circumstances where someone in hospice died was often so responsive to what was going on around them–even when they were unconscious or unable to respond–it looked like they’d chosen to leave at a specific time.

In the five years I served as a hospice volunteer, I saw many extremes in outcomes around this.

I had a client who was mobile, and aware, who had “months to live”, who died within a day of her own daughter (also her caretaker) being diagnosed with breast cancer. (Her daughter chose put her in respite care for the weekend–two days–just so she could process the news.) As if my client were saying, “I’ll be okay, but you need to take care of yourself now.”

I know two people, siblings, who sat with their dying parent all night. When it was one sibling’s turn, they fell asleep briefly.  And in that short span of time, their parent died. As if they were saying, “I love you, and I don’t want this to be your last memory of me.”

I know another client who died, again while a family sat holding their hand, asleep. It was the family member they’d had the most contentious relationship with. As if they were saying, “Please forgive me.”

Another client who had mere days, perhaps hours, to live, held on for over three weeks. Immobile, usually unresponsive, unable to eat nor drink anything except a few tablespoons of ice cream and soda during that time, yet they hung in there. One of their attendants, who’d become close with her, was expecting a baby. She was two weeks overdue. I believe my client was waiting for the baby to come.

I don’t know how many times I, and my fellow volunteers, someone would say to us, “We kept watch, we took turns, someone was there with them every day, every minute! They were never left alone! And then one night, on my shift, I went to the bathroom–I was only gone five minutes! And when I came back, they were gone. I still feel awful.”

The sense we are all left with is, sometimes there seems to be a choice, when to stay, and when to go.

Sometimes it seems obvious the person is dying doesn’t want their loved one to witness that.  For whatever reason, they wait until that tiny moment of time where they are alone–and they go.

Sometimes it seems they are waiting for someone–an out-of-state family member, a new baby–to arrive. They hang in there until the person either comes, or until the client can’t hold on any longer.

Sometimes it seems that they are waiting to hear something.  Perhaps someone who has to let go, someone who has to tell them, “It’s okay, it’s hard, but I’ll be okay. You can go”. Or for someone to say those four powerful statements: “I forgive you.” “Please forgive me.” “Thank you.” “I love you.”

So if this has happened to you, please don’t despair. There is no predicting how close someone is to death. Hospice and palliative care do the most good the sooner they can be brought in to provide services.

But even with the best of care, the best intentions, this was one of the most amazing, the most…okay, I’ll say it: miraculous thing I saw in hospice.

This is something I’ve been thinking about for a long time, and it’s surprising difficult to write about. But it’s important.

How our loved one leaves us, is often their last gift to us.

 

 

 

SORRY, WRONG NUMBER

It’s my last Fine Art Views article for 2015, but my first blog post for 2016! Go figure….

What happens when we misdial with our art marketing in Sorry, Wrong Number

Happy New Year!