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 Buddha in Disguise

1360 Relax and Succeed - It's amazing how much more can be accomplished

My 94 year old Dad was in the hospital for a low heartbeat that ended up being only a half-beat. It was causing him to lose blood flow and pass out. It was the falls that were doing the damage. People on blood thinners are extremely hard to bandage, particularly when they have almost no sense of touch, nor the awareness to fully cooperate.

Many people misunderstand dementia. For many it’s a disease that takes a very long time to take hold. Its progression can most easily be understood as a regression back towards babyhood, with the final stages being that helpless being everyone imagines. But the progression still has the potential for joy and full experiences.

Due to it’s slow progression in many, unless you knew my Dad well and saw him often, most people wouldn’t even have noticed the first decade of it. And even after that, the progression was still slow. Being a person obsessed with studying the brain, I realized that I needed some objective way of determining where he was at in his decline.

I am very science-minded in how I approach life, I use a lot of Socratic Method and some firm principles to make most of my decisions, so I’m a bit like Spock with a big heart, (except when I’m hangry, then I’m a Klingon). I looked at Dad’s life for instances where his mind had to do various levels of complex tasks and I realized that two of his favourite things were the perfect devices for assessing his capabilities.

Dad loves puzzles (those ones you’re supposed to take forever to take apart and yet always does them quickly), and he loves playing cards. I have a brain that naturally notices detailed patterns in behaviour, and so I can watch him and see what parts of his brain are active and which he’s lost. This is a good combo. His diseases ebbs and flows, and it goes in phases. It really is quite interesting.

If you want a metaphor for the common effect, dementia for many is a condition that you can think of as lowering the power supply to your brain. This means that thinking about more than one aspect of an idea at once (like comparing two potential hands in cards), gets hard without enough electricity to load up a new potential hand while still holding the first possibility in our memory.

It’s like he’s picking fruit to build the two potential hands of cards, but he can never hold enough fruit for two full hands. But the amazing thing about the brain is, it’s clever. Life always tries to find a way. Just because it doesn’t have the capacity to load all of those possible neural links at once doesn’t mean the mind doesn’t know that the info is in there.

When this happens, totally by nature you’ll see Dad coursing through his thoughts one at a time. It’s like walking every line on a spider web rather than grabbing the whole web at once. You can literally see his eyes following a chain of thoughts.

For those of us who know him well and can catch the look in his eye, we can often see him moving through this process when he is. But there are days where you can ask him a question, and think he’s lost it but it’s not important enough to re-ask. Then suddenly, five minutes later, Dad will be done his mapping of the spider web and out of seemingly nowhere he’ll say, “He was from Aberdeen,” in answer to your question in the previous conversation.

Dad with parrot at Fulton Eldercare

Where this can be frustrating for many is when he repeats questions (which is why he really likes parrots). When he’s tired but very fixated on something he can ask the same thing every two minutes for hours, (many caregivers note that fixated behaviour is another common reaction to dementia). While he was in hospital, a visitor seeing another patient asked me how I could stand it –that just hearing the same question five times in eight minutes drove him crazy.

I explained that I used to live in Sydney Australia in an apartment on a very busy road. When I first moved in I could hear every time the light a block and a half away turned green due to the change in the noise. Within a month people would visit and ask if the noise bothered us and my girlfriend and I would ask “What noise?” So, A) we get used to things.

B) is that it’s really quite easy to handle his repetition when we live in the Now because the concept of repetition demands we think both a past and a future into being. When Dad does bother me it’s when I’m living in the past by recalling the last time he asked me. I can’t blame that on him, that’s me. I don’t have to have my brain still talking to me about what happened 3 minutes ago.

When I don’t –when I’m present– I just turn and answer him originally every single time, and it sounds pretty much the same the 80th time as the first. Because I’m not dragging him through the other 79 times before I react. Each time is new, in that moment, for both of us.

We can’t expect to exhibit our best behaviour all of the time, so when I’m tired and hangry I want to be clear that I too can get impatient with Dad. There is no question there are high odds of frustration with dementia. But for the most part it’s rare with him and I because, in the present, there is no history to repeat or deny.

When spending time with Dad, rather than look back and wish I could go forward faster, I just plod along at his slower pace and keep my mind from racing ahead. It’s actually good for me.

Care-giving is an extremely taxing role even if we have a lot of skills around how we use our consciousness. But if we do have those skills, we can make that experience very rewarding, and the cost of the experiences pays off in terms of our own development.

In the state that he is in now, Dad slows everyone down and engenders patience. He has us all reconsidering our actions, and he very naturally brings out the best in others. This makes his current role in life into one much like a Buddha. And in Asia they say it’s lucky to rub the Buddha’s belly. So today when we’re playing cards, I may have the advantage of faster memory, but he can always just rub his own belly.

peace. s

Love in Disguise

1320 Relax and Succeed - Love is often a discovery

There were exceptions of course, but life not that long ago was more about survival than prosperity or the pursuit of our ideals. Due to that, psychological management was not even considered; raising children was largely seen as an exercise in teaching them to survive by the time they no longer had a parent.

As I’ve noted in pieces I’ve written before, up until the 1960’s it was common for parents to be taught that open love or coddling would result in weakness, and that a parent’s job was to prepare children for the harsh realities that go with dealing with a society filled with humans, all learning how to be better people as they go.

If someone survived and improved the world rather than made it worse, a parent was seen to have succeeded. This didn’t mean people were cold or uncaring, but they were often more practical than emotionally supportive. If painful things happened, most kids were just told quite matter-of-factly that life included pain because that’s the truth.

On top of the generational zeitgeist that focused more on the practical than the emotional, my own father had a father who was apparently quite abusive and threatening. My Dad’s response was to want to be the opposite of his father –and he is.

But despite him being so awesome, he still was not raised with a language for love.  His love is expressed by giving others his full attention, which feels wonderful to experience. But turning his feelings into words is as weird for him as it would be for us to try to find words to describe the colour red to a person who had been blind all their life. But that doesn’t mean we haven’t found a way to communicate.

When I say “I love you” to my fantastic Dad, he answers “Good.” It took me a while before I realized that he had found a better exchange than I had intended.

I was assuming we were trading ‘I love you’s,’ but he answers ‘good’ because –if I love him– then that means he’s not like his Dad and his greatest fear was being like his own father. I got to be the one to tell him he wasn’t. I get to confirm that his most important goal in life was achieved. How lucky is that?

He might be 93, have dementia and be super challenging in various ways, but we still find numerous times a day where our love for each other is softly and beautiful displayed in ways that make a hard job still feel entirely worth it. Every time I get worn and let him down it makes me a better person, and spending the majority of my time making this great man feel safer in his most vulnerable years is a powerful privilege that I am honoured to fulfill.

Remember, no matter how things appear, there is always room in life for more love.

peace, s