The Caregiver’s Test

1365 Relax and Succeed - The Caregiver's Test 2

As many of you know, for close to 10 years now I have been increasingly shifted into a full time role as the sole caregiver to my elderly parents, who are both old enough to have both served in WWII.

Much to the disappointment of those in need, the vast majority of people will never even consider taking on care-giving. Then again, rarely did our parents offer to care for their parents either.

Even in large families the duties almost always fall to either the spouse, a single sibling or one child. That singularity means the social, financial and emotional prices are all paid by the patients and those solo caregivers.

What is unknown to many is that even in the system here in Canada, which is one of the better ones around the world, there are still nowhere near enough long term care beds for the number of people who need them. There are also many seniors who have zero interest in living in them for very good reason.

(Sit with enough seniors long enough and they start confiding senior secrets about the weird challenges that go with institutional living. But I’ll leave that for another post.)

Unless a person is able to pay a large amount to get into what is essentially a ‘medical condo,’ in many cases the wait lists for public facilities can last many years. If the people did not previously know to plan ahead and get on a list prior to them needing the placement, the parent may only be given space weeks before death is imminent.

This inevitably means that someone in the community will have to step up or the person can end up homeless –as we can all see if we look at the ages of some of the people on the street.

For those lucky enough to avoid that, they survive thanks to caregivers providing 24 billion dollars worth of unpaid care every year. Caregivers pay this price by lowering the amount they work and earn in order to create the ever-increasing amount of care time.

Those financial costs are very real, and many of the fears around care-giving are valid. But many are also myths. For example, in cases of dementia, the public tends to overestimate how bad the process is for the patient and underestimate how challenging it is for the caregiver, because the patient’s decline is eventually obvious, whereas the prices paid by the caregivers go almost completely unseen.

In dementia, a lot of the time people that have the disease can function quite well and enjoy life for even a couple decades if it’s progressing slowly, and as long as they have someone around to protect them from mental mistakes or physical danger. It’s only the final stage that is the part most of the public imagines as ‘being dementia.’ This is very good news if you’re worried about memory loss.

Dad with parrot at Fulton Eldercare
My father is my hero. He goes to a seniors group for 10 hours each week. He still loves to play games, and he still loves music, and dancing, and he especially loves it when the playschool down the hall visits, or when there are animals brought down from the zoo for the day. Since parrots repeat things too, they are often the perfect conversationalist for people with dementia.

Meanwhile, the caregiver’s prices are difficult to describe. As one might guess, this role is largely taken on by women. And by being in countless waiting rooms with female caregivers, I know one of their biggest care-giving challenges relates to love.

If we think of the ages of the seniors, it means the caregivers are often nearing the end of what is considered the most romantic parts of their lives. Generally, it’s only after they start care-giving do they usually realize that if they are married, it will in most cases strain their marriage –even to the breaking point. That is like two huge weights on them at the same time. Who should be the priority in that case, the parent or spouse? It’s like a form of ‘Sophie’s Choice.‘

If the caregiver is single, the care can virtually end their romantic life at a time when they feel like time is already running out. As nice as dating can be when we’re older, dating at 30 or 40 is not like dating at 50 or 60, and there is no recovering that ‘romantic youthfulness’ for most people, and they mourn that deeply.

I felt these quiet but painful prices were best expressed by a woman who confided in me that the reason she was suddenly brought to tears in a waiting room was due to a comment from a dear friend, earlier that day.

The friend came by for a rare visit that afternoon at the home shared by the caregiver and parent. “She hated the ‘smell of old people.’ After half a cup of tea she told me to call her to make plans and we could go out for tea instead. I felt like a judge giving me a life sentence.”

If that doesn’t seem that bad, add this: the caregiver knows there is zero chance of that happening because in many cases it simply isn’t an option to find someone to take responsibility for someone with a medically complex case on for a few hours so the caregiver can go out for tea. And her mother’s bowel control did not allow her to take her out in public, so in essence the friend was saying that she wouldn’t see her at all.

“I was living inside that smell every day of my life for the last four years. If my best friend wouldn’t stay I knew right then that my romantic life was over.”

It is unlikely that the departing friend saw her words as the death knell for her friend’s sense of femininity, but when a conversation like that is one of the caregiver’s few interactions with the outside world, and it’s coming from a close friend, it sounds like a door slamming on life itself.

1365 Relax and Succeed - It is not a test of our ability

The question is, why do caregivers pay these enormous prices? The answer is the same for any question involving any price paid by any human for any thing. We believe the value we get back exceeds what we are paying. Both capitalism and love exist on this reward-based framework. If we don’t think something’s worth it, we won’t invest ourselves in it.

That being the case, it is difficult to describe the feeling one gets from intimate moments in care-giving. It can be a lot of prodding and arguing and cajoling, but can also be a lot of laughing and trust and understanding. And there are few better feelings as when your parent expresses, in a rare weak moment, that they are not afraid of dying –but of losing their sense of security in the world– and that you are the rock they are clinging to.

When you realize that they’re telling you they wouldn’t feel safe without you –and these are cute, frail, weak little old people– it breaks your heart open and you just want to do everything to help them feel safe the same way we would with babies, who are equally helpless.

Care-giving is the hardest thing I have ever done and I would very strongly urge anyone considering it to do as I did. Prior to doing it, sit down and frankly listen to people who have done it. Do not take their warnings lightly. Listen to podcasts and radio shows about it. Watch documentaries and read books and blogs from people who have done it, and in doing so you can learn more about both the rewards and the prices that go with care-giving.

If it feels right for you, do it. If it feels too big –too hard or too big a sacrifice– then you are not the person to provide the care and it is fine to accept that. This is not for the faint of heart. This is entirely about the most generous and unconditional form of love.

The role is taxing in emotional ways that one simply has no hope of even imagining without being there for hours on end, every day, year after year, watching the patterns change, enduring some abuse, and cleaning and cleaning and cleaning and cleaning.

The grace in it all is contained in the fact that, in the end, it is the contrast created by paying all of those social, emotional and financial prices, that make the tender moments so incredibly powerful. They can get you through literally years of struggle.

Having a parent be frightened, and then come to us for the comfort they once hopefully were able to give to us –has given my life more profound meaning than any other thing I have ever done.

peace. s

The Friday Dose #55

620 Relax and Succeed - Use what talentsI’m pretty excited about today’s Dose. This should leave you feeling a lot more passionate about living in a way that truly suits your nature. So how about if we take about 20-30 minutes for some very enjoyable activity and literally come up with a plan to change the world? Okay, let’s start with—where are we now? Even though the crime rate has gone down steadily for about 40 years, all we see on the news is people treating each other terribly. Fraud’s, thefts, violence, murder and even rape. We all see enough of that. Instead, let’s use the best version of ourselves as a starting point. The problem with modern culture is that everyone is forced by their work to be disingenuous. Accountants will proudly state, “I can take a two million dollar profit and make it a four million dollar loss and still meet all the generally accepted rules of accounting.” Fancy words for lie. $4.99 is a lie. It’s five bucks. At a dealership it’s always so hard to get the price of the car! No one’s cooperating. Everything’s faking like these are genuine relationships, with first names and handshakes or even hugs, but this is no tribe that’s grown up together and would die for each other. In our system it’s literally structured based on the fact that each person is motivated fairly strictly by their own needs. So like a telephone, we lie through the numbers or words and other people pretend to listen to us for an entirely artificial conversation. So has anyone fixed that problem yet? This guy’s off to a pretty good start. 🙂

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Okay that was pretty cool. Do you see how already that felt so much better than the duplicitous version where the person or business pretends to be helpful? But that’s all a magician’s trick where it’s just to get you looking the other way so they can pad a charge somewhere. I know people try to stay in that healthy, respectful zone, but our social structures sort of force us into those roles as though we’re in a play and our role is the bad guy. Okay, so how do we become our own director? How do we take a healthy form of control so that we can use that energy in a focused way. Well this guy here has an absolutely beautiful encapsulation of what I do. I will still engage with certain things, but because I want to, not because I can’t control myself. This is brilliant. I really think this is going to add up to something, so think about sharing this page of videos. I really do want to change the world. Okay, so let’s here this young genius:

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Nice! Okay, so now we’re under control so we don’t have to be so hard on ourselves. Now what? Well, if we’re not engaging in much negativity then we’ll have a whack of energy to apply to other things, so how about we think about shaking that cage that makes us act in ways that we don’t feel good about? We have to remember that it’s not really a cage. It’s in our minds. All of these controls are only in our minds. Here’s a pretty inspirational video on breaking out. And I love that this is how farmers and artists and craftsmen live:

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Now that we’ve decided to dismantle what we had in order to build something better, what do we want to build? What are our aims? Well, we all would like to find a way to be in a physical and psychological place where it’s possible for us to really and truly love ourselves and our life. So let’s stop all the problems in the world. Gandhi is a pretty impressive role model, and we all know he said be the change you want to see in the world. Well some people are already modelling that behaviour.

I have some soul-close friends I’ve travelled the world with who attend Burning Man semi-regularly. We’re all planning a big trip with a large group of friends soon, but we need a lot of lead time because we really want to do something smart and spectacular. Because Burning Man isn’t like anything else. Burning Man is the future. And best of all, we can truly be our own uninhibited selves. Imagine if you actually felt so awesome acting in public the same way you only do when you’re dancing in front of your own mirror to your favourite song! True freedom. And you feel great about it because everyone around you is doing it too. And that combination of collective spiritual freedom of the soul is actually the culture of Burning Man.

Your joy and creativity in realizing your true self is what that culture is all about. So let’s change the energy for a minute and I’ll provide a list of videos that collectively will give you a good sense of why the festival is so unique and famous for how it feels. Here’s an overview so that all the super cool stuff will make sense. In many ways it really is the most important part. It’s the framework for the plan to save the world:

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Here’s a video that gives you and idea of what the festival actually looks like. And remember, this 60,000 person city rises up out of nowhere for one week and when everyone leaves you’d never know they were there. The art projects, the fantastic vehicles and the amazing costumes all flow into the culture and spirit and the whole place sort of feels like a church during a wedding—it’s just got such great energy. Consider joining us. We want the city to expand until it includes the entire world.

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And finally here’s a TED talk delivered by a seven year old about her experience at Burning Man. It’s from a seven year old, but at that age she does a fantastic job of capturing the key reasons why people love Burning Man. They also got a lot of great shots of some of the amazing things her and her dad saw. Here’s her talk and pictures:

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So are you with me? Let’s all start by not taking those bombs from people. It’ll take a while to remember to do it, but if you practice you’ll have it down in no time. And it leaves you with way more energy and enthusiasm. So think about how you would revolutionize your life. Even if you never go, actually plan a trip. Maybe even come up with some creative project. The whole point of Burning Man is that you start to actually wholeheartedly participate in your own life.

There’s so many great photographers at Burning Man, and I know I’ve mentioned him a few times before, but a favourite of mine is Trey Ratcliff. No one can sell anything from Burning Man, but Trey has a lot of other amazing work you’re very likely to find spectacular. Enjoy the site. They’re all as good as this but they vary widely so check it out:

TREY RATCLIFF

620 Relax and Succeed - Trey Ratcliff - The Dock in the Desert-X3

I’ll leave you with a link to a great collection of TED Talks about the various aspects of Burning Man. There’s also a great collection of documentaries on YouTube featuring various perspectives on the festival. As you look at them, do not think of those as ideas isolated out in the desert like a sanctuary. Instead take them into your world and breathe life into them with your own being. That would be very Burning Man. 😉

peace. s

PS 😉

Matthew Schoening

THE BURNING MAN GALLERY

peace. s

The Friday Dose is a collection of cool, interesting and surprising things that are chosen for their potential to distract you away from any painful thought loops that may currently be disrupting your sense of perspective. Save these for when you’re feeling low and you want to change your perspective. They’ll help Enjoy. And please let me know if you bump into any broken links. Thanks!

Karma Schmarma

I know it will appear to many people like I’m disagreeing with ideas I’m actually not disagreeing with, but I’ll risk that because I also want to clear up some confusion I hear regularly shared between people. I’ll often hear people guilelessly using Christianity to warp an Eastern philosophical concept into something it’s not.

It is best not to think of Karma as being “what comes around goes around.” It is not about retribution. Nor is it about someone getting a reward. I know some say it’s about a soul stepping up in consciousness and I don’t completely disagree with that description, but that definition inadvertently encourages a sense of a separate you, and that kind of definition has that separate you going somewhere either good or bad in terms of your spiritual development.

That idea of separateness, and a goal that you would have to get to is still a very ego-based humanistic view of the universe. Karma is a principle that carries out its effect in the energy-state that exists as the foundation for the human state. At that foundational level there is no distinction between this person and that person. There is simply negative energy or positive energy and each requires the opposite to exist.

Karma exists within the tradition of oneness, so there aren’t separate parts to feel the pain of retribution, nor the pleasure of reward. It’s not like Dalai Lama #14 was all of the exact same atoms or particles that Dalai Lama 13 was. If that seems like a paradox then there’s your lesson. The dreamer is the same—the universe. The dream is the same—the Dalai Lama. But this is not the same dream as the previous dream. Do you see? That is reincarnation.

We are all One. If one gets hurt, everyone hurts. Okay, so if “what comes around goes around,” doesn’t represent Karma, then what does?

Simply put, Karma is more like, “we’re all in a swimming pool together. Please don’t pee.” It’s not that the negative energy will impact the person who sent it out—that might be the case. Clearly there’ll be more pee near the person peeing. But it’s no guarantee they’ll be affected most. And no matter what, the pee is out there for all of us now.

How does this manifest in real life? It’s this easy: A jealous man accuses his wife of cheating just before she leaves for work. They fight, and she arrives at work where she takes out her frustrations on a junior employee for a minor mistake. Because he respects his boss so much, he’s crushed by her anger and on his way to lunch he is thinking too much about that and not enough about driving and he ends up in an accident. This is the cause and effect chain. So don’t pee in the pool if you don’t have to. That’s how a butterfly starts a hurricane.

The nice thing is, this God/Universe pool naturally cleans itself, so the individual souls/consciousnesses just have to pee the least amount possible and the pool will be as clean as it’s able to be. But remember, it can never be completely clean because people just need to pee sometimes. And if we can accept that, that’s just fine. Because Yin will always need Yang to exist.

Enjoy your swim.

pees. s 😉

Scott McPherson is an Edmonton-based writer, public speaker, and mindfulness facilitator who works with individuals, companies and non-profit organisations locally and around the world.