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

Devices of Judgment

1359 Relax and Succeed - Thoughts are a good servant but a bad master

Our world was shaped by thoughts. Those thoughts get codified into social codes or guides or laws or through things like school grades, or peer pressure built around the concepts of popularity or acceptability.

Some of these devices are tangible things like step counters or gym weights or weigh scales. The pressure we feel in life is us trying to fit our natural shape into the predetermined forms these tools or ideas create.

The outcomes are somewhat predictable. Every code gets applied to every person equally, even though some people may never be athletic no matter how hard they try, and others may struggle academically in ways that do not reduce their value as a human being at all. But all of us will be judged by many people –most notable ourselves– for not being many things, as though we were supposed to have been them all.

The only way to escape is to be so far removed from those ‘tests’ that we get a free sympathy pass from society because we have one huge natural judgement running against us, like childhood cancer or deformities or severe mental challenges.

Some are seen to be so obviously struggling with what is obviously a heavier load that it’s a more definitive signal that knocks us out of our personal thinking. That jolt to our awareness ignites our compassion by so strongly exposing our good fortune.

That is a beautiful thing to do for others, and that is why people in those situations should be seen more like spiritual teachers in society. They elicit an essentially universal reaction that does expose our natural tendency as humans, which is decency, while also making us grateful, which is spiritually healthy. They’re monks in wheelchairs and in canes.

Where we can benefit from increased awareness is to realize that while some people have their suffering jammed into a generally narrower set of experiences, (like those of a severe autistic, or someone who is born without any limbs), others are also suffering badly, but with more general things like their weight, or their income, or the acceptability of their personality.

Because those feel like the problems of more common, so-called ‘normal’ people, we often don’t realize that those issues and people would also benefit from our awareness and decency. Smaller issues –even presumed– can pile up to the point where they can cripple our lives.

1359 Relax and Succeed - This scale does not

If we count steps or weigh ourselves for our health, it’s not to hit some numerical target. The point is to feel good and have a doctor feel that the weight –whatever it is– is in a range that respects our unique bodies. A healthy heart should be about getting more time with loved ones, not meeting the doctor’s target. We must love ourselves, not try to be someone for others.

Too many times something like a calorie app or a weigh scale are not simply weighing things in the physical world. Instead, they are drawing some abstract chalk outline onto the world and then asking us to fill it. It’s crazy. We weren’t supposed to become what an app said because the person who wrote it never met us. Nor the person who built the weight scale, and just because a hairstyle is popular does not mean it looks or feels good on us.

We suffer when others have generalized the individual us. And when we do that to ourselves as well, all we’re doing is using an abstract cultural whip to beat ourselves. It’s the opposite of spiritual awareness.

Can we really imagine someone going to the Buddha, or Moses or Jesus or Mohammad and having them tell the person their soul will find nirvana when they lose some weight? Or get a better haircut? Or a job that’s more respectable? Would Jesus tell us that we can give up now, because we were born gay, or in the wrong country, so nothing we could ever do could make us worthwhile?

It’s hard to imagine the Buddha saying, “Sara, you will find enlightenment but you must get your Thursday Tinder date to like you or your life will be an unhappy disappointment.”

Deep down you already know this is true. The people that love us don’t need us to be any particular way. Not a shape, or age, and they love the person that lived our experiences, even if they don’t always like some aspects of the personality that grew out of those experiences. They love the soul at our center –the being living all of that life. We should all love that person too.

What others think are merely individual experiences they are having inside their own heads. Those judgments don’t impact us at all if we don’t start thinking them in our heads.

If we saw a loved one beating themselves up terribly over their weight it would be heartbreaking because we would all know they are so much more than that dumb number. And that impulse is beautiful and natural. But enlightenment really comes when we learn to direct that compassion toward ourselves. Because only then will we free ourselves from the suffering we generate when we use our devices of judgment.

peace. s

Relationship School

1348 Relax and Succeed - Relationship School

This fall I will be starting the latest round of my course, The Principles of Healthy Relationships. I won’t pretend to know who or what is right or wrong for someone else. But I do know that by learning how to clear our heads and change our perspectives, we can learn to more clearly see what defines a healthy relationship for us.

Each of us comes to our relationships with unique histories, unique circumstances and a unique personality. Those factors in turn lead us to date in unique ways and to create unique relationships. We even have unique breakups. And yet within us there is a certain consistency that we see emerge as patterns.

The differences between us derive from small differences in how we weight our values and our preferences, and our patterns emerge because those rarely change. But what is helpful is that we all share a set of helpful principles that we process our values and preferences with, and we can become conscious of that process.

We all know it’s possible for us to be attracted to certain kinds of unhealthy situations, and we often have the same conflicts with multiple partners, both of which are indications of the invisible set of rules we have been using in our relationships. Yet, we cannot function wisely within them if we’re not even sure what those rules and boundaries are, where they came from, or if they’re helpful.

It is possible for us to be more conscious of what we bring to a relationship, both in terms of how we foster them in healthy ways and how we unwittingly undermine them. Because we not only need to know how to find joy, we also need good strategies for how to manage our particular brands of trouble.

Every good relationship runs into problems –even serious ones. But the healthiest relationships succeed precisely because they have calmly thought out good strategies for dealing effectively with the patterns we create with our lives.

If we understand our Selves and how we truly operate, we are then able to tell the difference between when our ego is over-reacting, and when we have an issue that truly needs a healthy resolution.

By slowing our dating, relationship and breakup processes down, and by seeing them in new and insightful ways, it is much easier for us to find healthy new routes into better quality relationships.

1348 Relax and Succeed - Being single dating being in a relationship

If we’re single we can benefit from gaining a better understanding of the differences between solitude and loneliness. That way we can avoid both hiding from relationships, as well as being pushed into unhealthy ones. (It’s no surprise that we often make better choices when we’re feeling healthy and not under stress.)

If we’re dating, that’s often through websites which match qualities and interests, and yet people in good relationships will sometimes share those and other times not, so clearly those are not the secret. Qualities and interests are important, but in the end what we are with in a relationship is someone’s true character. Knowing how to recognize it early helps us to figure out much sooner if someone is destined to cross one of our relationship limits.

And if we’re in a relationship, or if we’re thinking about leaving one, we gain by establishing much more clearly what our personal needs really are, and why we are with the person we are with. This can can facilitate very helpful dialogue and can just as often lead to a beautiful relationship renewal as it can lead to a compassionate and healthy break-up.

Whether we avoid someone, unite with someone, sacrifice to stay with someone or decide leave someone, in any case our actions should be motivated by the same underlying principle: because that choice will lead to a greater quality of life.

We can share our lives with others and we do not have to surrender ourselves completely to do it. At least not all the time. But we do need to know where our own balance points are, and how those correspond to our partners or potential partners. Without that we can easily see things tumble.

No one is ever wrong or right for everyone, but finding who we’re right for is certainly much easier when we have a clearer and more principled idea of what it is we’re really looking for.

peace. s