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.
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.
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.
A serious childhood brain injury lead Scott to spend his entire life meditating on the concepts of thought, consciousness, reality and identity. It made others as strange to him as he was to them. When he realized people were confused by their own over-thinking, Scott began teaching others to understand reality. He is currently CBC Radio Active’s Wellness Columnist, as well as a writer, speaker and mindfulness instructor based in Edmonton, AB where he still finds it strange to write about himself in the third person.